I have been remiss in posting an update since our monthly check-in with the transplant team a couple weeks ago. And now, Shirley is back in the hospital, so it is definitely time for an update.
The current problem is an abdominal pain and corresponding nausea. They've done a variety of tests. A CT scan revealed some spots on her liver that they are investigating further. Yesterday, she was so nauseated that we ended up in the ER and she received IV fluids to counter the dehydration and to permit her to get some of her medications via IV.
This morning, she was scheduled to come to the hospital for a test where some of her blood was removed and some of her white blood cells are taken and treated with a radioactive isotope. The blood is then returned to her body. Today they did a first scan and then tomorrow there will be a follow up scan. We hope that these tests will help reveal what has been causing the pain and nausea.
In the meantime, Dr. Glavan decided it would be worthwhile to admit her overnight for observation and to deal with continued dehydration.
At this point, there is not much more to report, but I will post a follow-up tomorrow as we learn more.
Tuesday, November 19, 2013
Thursday, October 10, 2013
Home Again
We had hoped that Shirley would get released on Wednesday, but because Dr. Glavan wanted to make sure her blood levels stayed normal for another day. Hence, Shirley was treated to another near sleepless night at the hospital.
The doctor came by with good news early in the am: blood levels look good and discharge was being processed. So after four days in the hospital we have discovered that a urinary tract infection was likely the cause of her nausea and fever and that some of her meds may have attributed to anemia. The doctors also discovered a mild viral infection (CMV) that is prompting a change in another one of her medications.
Thanks to all for your thoughts, prayers and well wishes. Shirley's next order of business is to catch up on the sleep that it seems impossible to get while hospitalized.
The doctor came by with good news early in the am: blood levels look good and discharge was being processed. So after four days in the hospital we have discovered that a urinary tract infection was likely the cause of her nausea and fever and that some of her meds may have attributed to anemia. The doctors also discovered a mild viral infection (CMV) that is prompting a change in another one of her medications.
Thanks to all for your thoughts, prayers and well wishes. Shirley's next order of business is to catch up on the sleep that it seems impossible to get while hospitalized.
Tuesday, October 8, 2013
A Working Theory
Shirley got a 2-for-1 deal today with both an Endoscopy and a Colonoscopy. Neither procedures found anything of concern that would be a cause for her anemia. With internal bleeding ruled out, attention has focused on her medication list.
A consultation between her local pulmonologist, Dr. Glavin; her transplant physician Dr. Lease; and a hemotologist, Dr. Li who was called in to provide insight has resulted in a theory that potentially two of her medications are to blame. One, Dapsone, which is taken to prevent a particular strain of pneumonia, is being stopped as of today. There is an alternative, once-monthly treatment that will provide the same protection.
The second medication, Mycophenolate, is one of her anti-rejection drugs. They are going to cut her dose by 50%.
Following yesterday's transfusions, her crit level went from 20 to 29. They will monitor her levels daily to ensure that they don't take another precipitous drop. With any luck, this will resolve the anemia issue and we can get back to her regularly scheduled rehabilitation.
Monday, October 7, 2013
Back in the Hospital
Shirley was readmitted to the hospital last night. In my last post, I mentioned that she needed a transfusion a week ago Friday. She was feeling poorly after that and made an ER visit on Tuesday where she was treated for dehydration and released after a few hours.
Over the weekend, she continued to have abdominal issues and ran a low grade fever. She also started throwing up, which is one of triggers for calling the doctor. He advised to go to the ER again, and after a round of tests, it was decided that she needed to be admitted.
Only ten days after a two-unit blood transfusion, her crit levels were again too low and another two were needed. It is the "why" that is going to keep her in the hospital for next several days. There are several potential causes for anemia that need to be investigated:
- The fever that she has had may have slowed blood cell creation. But this is unlikely to be the source, as the fever only started recently and was not evident ten days ago when the first transfusion was given.
- Internal bleeding is another potential cause. But Shirley hasn't been exhibiting any signs that this is the issue. They have decided to do both an endoscopy and colonoscopy to make sure there are not any G.I. issues that are contributing.
- Drug reactions. Several of the drugs Shirley takes--including her anti rejection drugs--can interfere with blood cell creation. A Hemotologist who met with her today suspects this is the most likely issue and the hospital is reaching out to the transplant team to see about at least temporarily suspending one of the drugs to see if it resolves the issue.
They are also doing some additional tests to rule out some more exotic and rare potential causes.
I'll be doing daily posts until Shirley is released and we have some answers to these questions.
Tuesday, October 1, 2013
A Quart Low
While in the hospital, there were a couple of times that
Shirley needed blood transfusions due to low blood cell counts. Since her release, she goes in each week for
a blood draw so they can monitor her blood chemistry. On Monday, they noted that her hematocrit
level was low and she was asked to take another test to verify. Low crit levels are commonly referred to as anemia, where you just don't have enough cells to sufficiently carry needed oxygen to your body.
Friday she got a call confirming that her count was around
19 (normal is about twice that) and that meant a trip to the ER for another transfusion. While we were told this would be a procedure
they could do in the ER, it turned out that due to the lead time to get from the blood bank, length of time to transfuse and time on the back end to test and monitor her before release, that
they ended up admitting her overnight. It takes over two hours per unit and she took on two units of packed red blood cells.
She was released early Saturday morning, but still feeling
tired. Stay tuned. Another update is likely in the near future.
Tuesday, September 24, 2013
Last Tube Removed
Yesterday, we made another trek to Seattle for a follow up visit to the Transplant Clinic. These visits will continue for the rest of Shirley's life, but the interval between them will continue to increase as she gains strength and stabilizes her medications.
The core of each visit will be the same: a Pulmonary Function Test (PFT)--to check and see how her lung capacity is trending; a Blood Draw--primarily to check her Tracrolimus levels (one of the anti-rejection drugs); and for a visit with her Post Transplant physician, Dr. Lease.
Monday's visit also included a trip to the Interventional Radiology Department to have the port removed that had been left in place to facilitate blood draws and any IV medicines that may need to be delivered. Down from as many as eleven tubes connected at a peak, this last one finally allows Shirley to take a shower without having to tape a plastic cover of the port.
Shirley's PFT score was much improved from her most recent prior test and about equal to score at the time of her discharge when she had been doing multiple hours of therapy every day. We knew that the prior score was down due to back pain issues. While her back continues to be problematic, it isn't slowing her down much now and the PFT scores prove this out.
Dr. Lease reviewed her medication list and suggested stopping several drugs. Probably the most welcome of these was the Potassium supplement that has been very hard on her stomach.
On the way home, Shirley drove the last few miles--her first time behind the wheel in over seven months. This morning, she drove Joy to and from school. Another milestone and another level of independence that is being regained.
The core of each visit will be the same: a Pulmonary Function Test (PFT)--to check and see how her lung capacity is trending; a Blood Draw--primarily to check her Tracrolimus levels (one of the anti-rejection drugs); and for a visit with her Post Transplant physician, Dr. Lease.
Monday's visit also included a trip to the Interventional Radiology Department to have the port removed that had been left in place to facilitate blood draws and any IV medicines that may need to be delivered. Down from as many as eleven tubes connected at a peak, this last one finally allows Shirley to take a shower without having to tape a plastic cover of the port.
Shirley's PFT score was much improved from her most recent prior test and about equal to score at the time of her discharge when she had been doing multiple hours of therapy every day. We knew that the prior score was down due to back pain issues. While her back continues to be problematic, it isn't slowing her down much now and the PFT scores prove this out.
Dr. Lease reviewed her medication list and suggested stopping several drugs. Probably the most welcome of these was the Potassium supplement that has been very hard on her stomach.
On the way home, Shirley drove the last few miles--her first time behind the wheel in over seven months. This morning, she drove Joy to and from school. Another milestone and another level of independence that is being regained.
Tuesday, September 3, 2013
Brownie Points
Today was our first return trip to Seattle for follow-up appointments since our return to Oregon. We drove up Monday night and somehow managed to miss all the end-of-holiday traffic and make it up in under three hours. We had a nice visit with Pete, Caroline and Frances. And while we really like being home, we miss our "roomies" and the wonderful hospitality they extended to us for six months.
The first appointment was at 7:45 for a bone density test. We won't hear the results on that for a few days, but Shirley has been given a new prescription that is supposed to help strengthen her bones. From there, it was a chest x-ray; blood draw to check her Tacrolimus and Coumadin levels; a pulmonary function test (PFT); and then a meeting with her post-transplant physician Dr. Lease.
Some adjustments were made to her medication levels and the results of her PFT tests showed a lack of progress on expanding her lung capacity. Given the back pain Shirley has been dealing with, this lack of progress was not unexpected.
Before heading up, we baked four batches of brownies and after today's appointments were completed, we visited several of the floors that had cared for Shirley in her most recent hospital stay. The first batch was dropped off with the post-transplant team where we had our appointments today.
Batch #2 was taken to the 8th Floor Rehab unit. The first person we saw was Martha, one of her main day-shift nurses. We visited with her and said hello to several others for about 15 minutes. All were delighted to see her and were very impressed by how good Shirley looked.
Batch #3 went to 5-East the ICU where Shirley spent 40 days. Unlike the Rehab floor, where they got to see Shirley at her release, the ICU team saw Shirley at her worst--coming in when we she went into respiratory distress and leaving when she was transferred by ambulance to Regional Hospital (with a trachea tube in). The crew there were delighted to see her and how much she had improved. Below is photo of Shirley with Edwin, Gayle and Greta three of the nurses that cared for her during those trying days.
Batch #4 was taken out to Regional Hospital. Again, it was great to see some of Shirley's caregivers and for them to see her on her feet and looking so healthy.
Our next visit to Seattle will be in three weeks. At that time, Shirley's central catheter (used for blood draws & IVs) will be removed and she will be tube free!
The first appointment was at 7:45 for a bone density test. We won't hear the results on that for a few days, but Shirley has been given a new prescription that is supposed to help strengthen her bones. From there, it was a chest x-ray; blood draw to check her Tacrolimus and Coumadin levels; a pulmonary function test (PFT); and then a meeting with her post-transplant physician Dr. Lease.
Some adjustments were made to her medication levels and the results of her PFT tests showed a lack of progress on expanding her lung capacity. Given the back pain Shirley has been dealing with, this lack of progress was not unexpected.
Before heading up, we baked four batches of brownies and after today's appointments were completed, we visited several of the floors that had cared for Shirley in her most recent hospital stay. The first batch was dropped off with the post-transplant team where we had our appointments today.
Batch #2 was taken to the 8th Floor Rehab unit. The first person we saw was Martha, one of her main day-shift nurses. We visited with her and said hello to several others for about 15 minutes. All were delighted to see her and were very impressed by how good Shirley looked.
Batch #3 went to 5-East the ICU where Shirley spent 40 days. Unlike the Rehab floor, where they got to see Shirley at her release, the ICU team saw Shirley at her worst--coming in when we she went into respiratory distress and leaving when she was transferred by ambulance to Regional Hospital (with a trachea tube in). The crew there were delighted to see her and how much she had improved. Below is photo of Shirley with Edwin, Gayle and Greta three of the nurses that cared for her during those trying days.
Batch #4 was taken out to Regional Hospital. Again, it was great to see some of Shirley's caregivers and for them to see her on her feet and looking so healthy.
Our next visit to Seattle will be in three weeks. At that time, Shirley's central catheter (used for blood draws & IVs) will be removed and she will be tube free!
Sunday, September 1, 2013
Part 2
We've moved from the stage of each day being something new, different, frightening or exciting; to each day being small incremental steps towards full recovery. The pace is much slower and to keep from boring our readers to death, the pace of posting blogs with shift back. It has been very interesting over the last few days to hear how many friends, neighbors and family were checking in daily for updates. I've been chastised slightly for not posting for awhile, so here we go.
I might suggest that since the pace will be slowing down, you may elect to become a follower of the page, which I believe then sends you notifications when there is a new post. Please correct me if I'm wrong on that point.
I might suggest that since the pace will be slowing down, you may elect to become a follower of the page, which I believe then sends you notifications when there is a new post. Please correct me if I'm wrong on that point.
It's been eleven days since the last post. In that time, Shirley has been challenged by the continuing burden of back pain. This has hampered how much exercise she has been able to do. Despite the pain, she has regularly left the house and gone to various appointments and shopping. The last couple of days. the walker has stayed in the car and she has ventured out with a supporting arm or a shopping cart to help with her balance. She's also weaning herself off the supplemental oxygen the has been taking.
This coming Friday, she finally has her first post-release physical therapy appointment. The delay was due to a communication mix-up that has now been resolved.
This Tuesday, we go back to Seattle for follow-up visits. In addition to meeting with the transplant team, she will have a bone density evaluation to determine if she has developed osteoporosis. This could explain the back problems if indeed her bone density has diminished.
I'll provide another update later this week when we return from Seattle and have some test results.
This coming Friday, she finally has her first post-release physical therapy appointment. The delay was due to a communication mix-up that has now been resolved.
This Tuesday, we go back to Seattle for follow-up visits. In addition to meeting with the transplant team, she will have a bone density evaluation to determine if she has developed osteoporosis. This could explain the back problems if indeed her bone density has diminished.
I'll provide another update later this week when we return from Seattle and have some test results.
Wednesday, August 21, 2013
Settling in at Home
It is all still kind of surreal, but we are home at last and beginning to settle back into a new routine. Shirley's niece Souang and boyfriend Nic who stepped in to keep the house running during our long absence are going to continue to stay with us for the foreseeable future so that we have an extended support network.
The pets were very happy to see us. Max, our oldest dog seems to be showing his age much more. He is mostly deaf now and has a hard time getting up off the hardwood floors. Molly, the little chihuahua mix seems to have trimmed down. Grace, the baby cat is now almost as big as the older Yori. The first night back they began sleeping curled up together in a bed beside the dogs, but by morning, Yori was back in his traditional spot-cradled in under Shirley's arm.
My folks printed up a big banner welcoming us home. As we turned up the driveway Monday night, it was the first thing we saw.
Shirley will have a busy week with appointments with both her local doctors and personal care needs. Fingernails were done Tuesday and hair will be attended to today. She will be seeing her local Pulmonologist and Primary Care Physician, as well as setting up physical therapy later this week. I guess the focus on the nails and hair first can be racked up to having seen far too many doctors over the last six weeks with limited attention to personal grooming. :)
We had a little scare last night, when her temperature spiked. Good thing we are monitoring basic vital signs twice daily so we noticed it. We called UW and spoke to the Transplant Fellow on call. We feared she would tell us to head to a local ER, but given that there were no other symptoms of concern, she told us to continue monitoring and report back if the fever persisted in the morning. By 5:30 am, it was back down to 98.4, so we dodged a bullet.
The pets were very happy to see us. Max, our oldest dog seems to be showing his age much more. He is mostly deaf now and has a hard time getting up off the hardwood floors. Molly, the little chihuahua mix seems to have trimmed down. Grace, the baby cat is now almost as big as the older Yori. The first night back they began sleeping curled up together in a bed beside the dogs, but by morning, Yori was back in his traditional spot-cradled in under Shirley's arm.
My folks printed up a big banner welcoming us home. As we turned up the driveway Monday night, it was the first thing we saw.
Shirley will have a busy week with appointments with both her local doctors and personal care needs. Fingernails were done Tuesday and hair will be attended to today. She will be seeing her local Pulmonologist and Primary Care Physician, as well as setting up physical therapy later this week. I guess the focus on the nails and hair first can be racked up to having seen far too many doctors over the last six weeks with limited attention to personal grooming. :)
We had a little scare last night, when her temperature spiked. Good thing we are monitoring basic vital signs twice daily so we noticed it. We called UW and spoke to the Transplant Fellow on call. We feared she would tell us to head to a local ER, but given that there were no other symptoms of concern, she told us to continue monitoring and report back if the fever persisted in the morning. By 5:30 am, it was back down to 98.4, so we dodged a bullet.
Monday, August 19, 2013
Homeward Bound
Today Shirley had her second follow-up visit with the transplant team since her release from the hospital. Last week, it would be fair to say that her doctors were reluctant to endorse her intent on returning home this week, but one week later and the progress was significant enough that we were given their blessings for a safe trip home.
We spent the majority of the day at UW: blood tests, pulmonary function tests, chest x-rays, meetings with the transplant team, filling prescriptions at the pharmacy, getting copies of medical records to take to her local pulmonologist, and getting a prescription for physical therapy to be filled in Portland.
Then a quick trip back to Pete & Caroline's to see how much of our six months of accumulation we could shoehorn into the car. Packed to the rafters, we headed home around 6pm. The traffic gods smiled upon us and even with stops for food, fuel and bladder relief, we were home shortly after 9:30 pm.
We were greeted by a large "welcome home" banner across the front of the garage; a spic and span house (thank you Souang and Nic) and some very happy dogs and cats. It's a little overwhelming in terms of where to start. The spare upstairs bedroom and now stacked with all the bags and totes brought back from Seattle; and the wet bar has stacks and stack of mail. It's going to take a few days to get unburied and organized, but I can't tell you how great it is to be home.
We spent the majority of the day at UW: blood tests, pulmonary function tests, chest x-rays, meetings with the transplant team, filling prescriptions at the pharmacy, getting copies of medical records to take to her local pulmonologist, and getting a prescription for physical therapy to be filled in Portland.
Then a quick trip back to Pete & Caroline's to see how much of our six months of accumulation we could shoehorn into the car. Packed to the rafters, we headed home around 6pm. The traffic gods smiled upon us and even with stops for food, fuel and bladder relief, we were home shortly after 9:30 pm.
We were greeted by a large "welcome home" banner across the front of the garage; a spic and span house (thank you Souang and Nic) and some very happy dogs and cats. It's a little overwhelming in terms of where to start. The spare upstairs bedroom and now stacked with all the bags and totes brought back from Seattle; and the wet bar has stacks and stack of mail. It's going to take a few days to get unburied and organized, but I can't tell you how great it is to be home.
Saturday, August 17, 2013
Planning our trip Home
The signs may be small, but every day, progress is being made on Shirley's recovery. She has not had to put on her knee braces the last two days to climb the stairs into Pete & Caroline's house. She took a shower and didn't need to rest on the shower seat. She took a more active role in making dinner last night than the night before. There is still a long way to go, but the progress is very encouraging.
And with the improvements, we have scheduled a return trip to Portland. We have a meeting we are supposed to attend for a being host family for our exchange student (who returns next Sunday!) on Tuesday evening and we've decided this is as good as any reason to come back for at least a few days. We are planning driving back next Monday night for what will be Shirley's first visit since February 13.
Our plan will be to stay in Portland until the following Monday, when we'll need to return to Seattle for another clinic follow-up visit. (Don't worry, Souang & Nic are still house sitting and will be there for Joy our exchange student). I have the annual Portland to Coast Relay walk on Friday-Saturday and depending on how Shirley is feeling, she may either come over to the coast to join me there, or stay at the house.
It remains to be seen if this will be a permanent return home or if we'll have many more nights to stay in Seattle. But it's a great start. We are really looking forward to sleeping in our own bed, seeing the house, pets, and all our family and friends in Portland.
Shirley went in yesterday for a scheduled MRI on her back to see if the cause of her pain could be identified. We haven't heard the official word yet, but was went in with her sister Betsy (a semi-retired Radiologist) and they came home with a DVD of the images. They identified compression fractures on three of her vertebrae, which correspond to her pain points. We'll wait for the official ruling and a determination of what they are going to suggest doing about them when she sees the doctors on Monday.
And with the improvements, we have scheduled a return trip to Portland. We have a meeting we are supposed to attend for a being host family for our exchange student (who returns next Sunday!) on Tuesday evening and we've decided this is as good as any reason to come back for at least a few days. We are planning driving back next Monday night for what will be Shirley's first visit since February 13.
Our plan will be to stay in Portland until the following Monday, when we'll need to return to Seattle for another clinic follow-up visit. (Don't worry, Souang & Nic are still house sitting and will be there for Joy our exchange student). I have the annual Portland to Coast Relay walk on Friday-Saturday and depending on how Shirley is feeling, she may either come over to the coast to join me there, or stay at the house.
It remains to be seen if this will be a permanent return home or if we'll have many more nights to stay in Seattle. But it's a great start. We are really looking forward to sleeping in our own bed, seeing the house, pets, and all our family and friends in Portland.
Shirley went in yesterday for a scheduled MRI on her back to see if the cause of her pain could be identified. We haven't heard the official word yet, but was went in with her sister Betsy (a semi-retired Radiologist) and they came home with a DVD of the images. They identified compression fractures on three of her vertebrae, which correspond to her pain points. We'll wait for the official ruling and a determination of what they are going to suggest doing about them when she sees the doctors on Monday.
Wednesday, August 14, 2013
Happy Anniversary
It suddenly dawned on me that it was the 14th. Six months ago today, Shirley got her new lungs. What a wild six months it has been. And it's been six months and a day since Shirley has been home--but we plan to remedy that next week. :)
Today, Shirley's sister Betsy came for a visit. She's in the states for a few weeks visiting from her home in France. This is her second visit since the transplant, but this time Shirley is up and able to move around and visit.
We continue to do retail therapy daily. Today it was just the grocery store, but yesterday it was an hour-plus at Costco, then another hour clothes shopping at Kohl's.
Each day she gets a little stronger. Today she did the steps into Pete & Caroline's house without having to put her knee braces on for additional support.
Tomorrow, Shirley has invited some friends over and is going to be the cook--something she loves, but hasn't been able to do for quite some time.
Sunday, August 11, 2013
Retail Therapy
I've heard the term "retail therapy" used in a joking way before, be we've merged the need for Shirley to be up and walking, the fact that stores have nice large flat spaces and the fact that she frankly needs to buy some stuff to give the term new meaning. For some reason, the clothing Shirley chose to bring with her for a February transplant just aren't quite appropriate for August--even with Seattle's mind climate.
Friday, after the day spent walking between hospital appointments and then six hours in the ER, didn't have too much time for other walking, but we did spend an hour browsing a local Bartel's store. Yesterday, we made a morning excursion with a couple of stops plus a nice drive along Lake Washington; and then an evening outing with a stop at one of Shirley's favorite clothing stores.
Today, we are going to tackle Costco and then hopefully go for a walk in a nice flat park somewhere.
Stairs and inclines continue to pose a challenge, but I can tell she's getting stronger every day.
Friday, after the day spent walking between hospital appointments and then six hours in the ER, didn't have too much time for other walking, but we did spend an hour browsing a local Bartel's store. Yesterday, we made a morning excursion with a couple of stops plus a nice drive along Lake Washington; and then an evening outing with a stop at one of Shirley's favorite clothing stores.
Today, we are going to tackle Costco and then hopefully go for a walk in a nice flat park somewhere.
Stairs and inclines continue to pose a challenge, but I can tell she's getting stronger every day.
Saturday, August 10, 2013
Familiar Surroundings
Day two of "freedom" was spent in a very familiar place -- the Hospital. Shirley was scheduled to go in for some blood draws. Both her Tacrolimus (an anti rejection drug) and Coumadin (for the blood clot in her neck) need to be checked regularly to adjust the dosage.
We went to the lab but Shirley's back was really bothering her. While waiting to speak to a pharmacist in the Anti-coagulation Clinic, Shirley called the Post Transplant Coordinator to discuss her back pain. The Coordinator advised her to go to the ER to have it checked.
At the ER, they did some X-rays and gave her some IV pain medications. They suggested that the best way to manage her pain was to re-admit her to the hospital, but that was not an option far as Shirley was concerned. Shirley chose to accept more pain and continue her rehabilitation as an outpatient.
They are going to schedule an MRI for her early next week to try to zero in on the cause of the pain. In the mean time, she will continue to build her strength and hopefully stronger muscles will help overcome some of the pain.
We went to the lab but Shirley's back was really bothering her. While waiting to speak to a pharmacist in the Anti-coagulation Clinic, Shirley called the Post Transplant Coordinator to discuss her back pain. The Coordinator advised her to go to the ER to have it checked.
At the ER, they did some X-rays and gave her some IV pain medications. They suggested that the best way to manage her pain was to re-admit her to the hospital, but that was not an option far as Shirley was concerned. Shirley chose to accept more pain and continue her rehabilitation as an outpatient.
They are going to schedule an MRI for her early next week to try to zero in on the cause of the pain. In the mean time, she will continue to build her strength and hopefully stronger muscles will help overcome some of the pain.
Thursday, August 8, 2013
First day home
Wow. More than 24 hours has passed since I brought Shirley home. It is going to be quite an adjustment for all of us, as we now are back into the mode of being responsible for taking medications, tracking vital signs and all the normal things people do at home.
We had a nice dinner with Pete, Caroline and Francis on their front porch last night. Tonight, Shirley was really craving Halibut and Chips, so we went to an old seafood joint on Alki Beach. Shirley and I then did a little shopping. Walking around a Target store is great exercise for her: Retail Therapy = Physical Therapy.
Tomorrow, we go back to the hospital for a blood draw for them to check Shirley's levels for both one of her anti-rejection and anti-coagulation drugs. These will be done weekly for awhile until her new normal routine for exercise and eating stabilizes.
We had a nice dinner with Pete, Caroline and Francis on their front porch last night. Tonight, Shirley was really craving Halibut and Chips, so we went to an old seafood joint on Alki Beach. Shirley and I then did a little shopping. Walking around a Target store is great exercise for her: Retail Therapy = Physical Therapy.
Tomorrow, we go back to the hospital for a blood draw for them to check Shirley's levels for both one of her anti-rejection and anti-coagulation drugs. These will be done weekly for awhile until her new normal routine for exercise and eating stabilizes.
Wednesday, August 7, 2013
Discharge Day
Shirley has graduated from the need for in-patient rehabilitation. Today they will discharge her. It has been 174 days since her transplant and all but 14 of those days have been in a hospital. Hopefully, this will be the last of the long stays, but we have been told that for transplant patients, they will often check you in for short term observation for things considered minor for non-immuno-suppressed people.
All that aside, today we go "home" to Pete and Caroline's for the next stage of our journey.
Before we can leave, we have to meet with the Pharmacist to review medications and see what has changed since the previous discharge. We also have a Respiratory Therapist coming up to assess Shirley's need for supplemental oxygen. After 5+ years on O2, Shirley acknowledges it could just be a crutch, but although she has basically not used it for the last 72 hours, she is uncomfortable at least not having some oxygen available if she feels short of breath.
We'll also be meeting with scheduling clerks to book more outpatient Physical Therapy visits; Transplant Clinic appointments, etc. She may not be spending the night here any longer, but we'll still be coming up 2-3 times per week for a few weeks before they will let us head back to Oregon.
All that aside, today we go "home" to Pete and Caroline's for the next stage of our journey.
Before we can leave, we have to meet with the Pharmacist to review medications and see what has changed since the previous discharge. We also have a Respiratory Therapist coming up to assess Shirley's need for supplemental oxygen. After 5+ years on O2, Shirley acknowledges it could just be a crutch, but although she has basically not used it for the last 72 hours, she is uncomfortable at least not having some oxygen available if she feels short of breath.
We'll also be meeting with scheduling clerks to book more outpatient Physical Therapy visits; Transplant Clinic appointments, etc. She may not be spending the night here any longer, but we'll still be coming up 2-3 times per week for a few weeks before they will let us head back to Oregon.
Sunday, August 4, 2013
Day Pass
It was scheduled to be a beautiful, sunny Sunday afternoon. Seafair was in full swing and Pete & Caroline were hosting family & friends that their house with a view of the boats, hydroplanes and airshow. It seemed like a good reason to request a pass to get Shirley out of the hospital for the afternoon and into the real world.
But before she could visit her brother's house, we had to get clearance that she could negotiate the steps into the house. We got the clearance after lunch and packed up for the adventure. Since the car was parked nearly a quarter mile away, we used a wheel chair to get her to the car, but just took a walker for our journey.
Shirley did great getting up the stairs and held court on Pete & Caroline's front porch. From there, we had a fantastic view of Lake Washington and all the festivities. There were hundreds and hundreds of boats on the lake. Many tied together forming giant rafts the lined the perimeter of the hydroplane course. The race was further south on the lake, but the northern most turn of the course was within our view and we could see the rooster tails of the boats as they flew around the buoy and headed back south.
We were also treated to multiple flybys of some vintage WWII bombers and fighters and acrobatic performances by stunt planes.
It was great to see Shirley in surroundings other than the hospital and really whet her appetite for a final departure from UWMC. With a little luck and some more work in the gym, that will happen this coming week.
But before she could visit her brother's house, we had to get clearance that she could negotiate the steps into the house. We got the clearance after lunch and packed up for the adventure. Since the car was parked nearly a quarter mile away, we used a wheel chair to get her to the car, but just took a walker for our journey.
Shirley did great getting up the stairs and held court on Pete & Caroline's front porch. From there, we had a fantastic view of Lake Washington and all the festivities. There were hundreds and hundreds of boats on the lake. Many tied together forming giant rafts the lined the perimeter of the hydroplane course. The race was further south on the lake, but the northern most turn of the course was within our view and we could see the rooster tails of the boats as they flew around the buoy and headed back south.
We were also treated to multiple flybys of some vintage WWII bombers and fighters and acrobatic performances by stunt planes.
It was great to see Shirley in surroundings other than the hospital and really whet her appetite for a final departure from UWMC. With a little luck and some more work in the gym, that will happen this coming week.
Saturday, August 3, 2013
Photo updates
There has been a request for some new photos of Shirley, so this edition is a photo-rich update.
I took several pictures the other day during her physical therapy session, so here we go.
I took several pictures the other day during her physical therapy session, so here we go.
Here is Shirley getting ready to go down to the gym for a round of PT. When she wants to sit up for extended periods, she's using a wheel chair currently. It is also helpful for longer transports.
Check out those skinny legs! Here is Shirley working on her balance and leg strength with her PT Margaret. Shirley is up to walking a couple hundred feet at a time. She is using a walker to balance herself. Yesterday, she was cleared to walk with me as her only supervision, meaning the therapy staff are comfortable that she has enough understanding of her limits and knows when to stop. Her walker has a seat, so she can turn around and grab a seat if she needs to take a break.
One of the criteria that Shirley has to pass before her release is proving that she can climb the nine steps she'll need to access Pete & Caroline's house (our temporary home here in Seattle). Step one of stair climb training is done on the parallel bars. Different height blocks are used to slowly increase the height that she is lifting herself. This photo is with the 6" block, which is just shy of a normal 7" stair height.
You'll note that Shirley has a yellow gown on. This is because in the course of a route weekly swabing, they detected MRSA, which is a Staph that can be very hard to control in hospital settings. She isn't experiencing any ill affects, but has been labeled as a carrier. She'll need to be gowned up when she leaves her room until they have three consecutive weekly negative swabs.
After successfully completing the block steps on the parallel bars, Shirley moves on to the 4-step flight that is used to simulate a normal staircase. She made it to the top of the stairs and here she is on the way back down. Later in the day, on this same device, her legs buckled on her and she jarred her back as the therapist grabbed her as she fell. This aggravated the same back injury that has hampered her rehab throughout this stay.
Time to relax after a hard day of therapy. It's nice to have enough tubes out that I can actually sit next to her in bed without worrying about pulling something important out. :)
Tuesday, July 30, 2013
The Date is Written on the Wall
Yesterday, the Rehabilitation team met together after all the disciplines had completed their assessments of Shirley. This morning, they posted a list of her goals (ones she created) related to what she wanted to be able to do by the time she is released. At the bottom of the sheet is their projected date for discharge: August 7, 2013. I had expected a 2-3 week stay, but if she stays on plan, this will be only be 13 days from her return to UW and only 9 days from today!
Shirley has been completing two Physical Therapy and two Occupational Therapy sessions each day. Today, she also got on an exercise machine as part of an "endurance" session that worked her skinny little arms.
Through these sessions, she has been fighting pain that she attributed to the compression fracture in her lower back. Yesterday, Dr. Smith, the Director of the rehab program had her lie flat on a raised platform so that she could assess the potential causes of the pain. She watched how Shirley held her body while laying flat and pointed out to her Resident how asymmetrical she was. Dr. Smith reached over and put her hand behind one of Shirley's hips. With a single touch she hit a bull's eye on finding the pain point. She applied pressure against this spot for a minute or so and as she did, Shirley's legs and feet moved into a symmetrical position. It was really interesting to watch.
They've now applied some topical pain relief pads over the hip joint and are having Shirley go back and forth between heat and ice to help relieve some of the muscle spasms.
Today, on both day and night shift, Shirley had visits from Respiratory Therapists that helped treat her during her ICU stay. Both Ron and Gerry were very pleased to see how far she has progressed. Gerry used to work at Regional Hospital and actually dropped by and visited her while she was at Regional.
If I haven't mentioned it enough, we continued to be amazed and blessed with the wonderful care and attention that Shirley has received both at UW and Regional.
Shirley has been completing two Physical Therapy and two Occupational Therapy sessions each day. Today, she also got on an exercise machine as part of an "endurance" session that worked her skinny little arms.
Through these sessions, she has been fighting pain that she attributed to the compression fracture in her lower back. Yesterday, Dr. Smith, the Director of the rehab program had her lie flat on a raised platform so that she could assess the potential causes of the pain. She watched how Shirley held her body while laying flat and pointed out to her Resident how asymmetrical she was. Dr. Smith reached over and put her hand behind one of Shirley's hips. With a single touch she hit a bull's eye on finding the pain point. She applied pressure against this spot for a minute or so and as she did, Shirley's legs and feet moved into a symmetrical position. It was really interesting to watch.
They've now applied some topical pain relief pads over the hip joint and are having Shirley go back and forth between heat and ice to help relieve some of the muscle spasms.
Today, on both day and night shift, Shirley had visits from Respiratory Therapists that helped treat her during her ICU stay. Both Ron and Gerry were very pleased to see how far she has progressed. Gerry used to work at Regional Hospital and actually dropped by and visited her while she was at Regional.
If I haven't mentioned it enough, we continued to be amazed and blessed with the wonderful care and attention that Shirley has received both at UW and Regional.
Saturday, July 27, 2013
Settling back in at the U
I never though getting admitted into a hospital ward could feel like a reunion, but that's exactly what yesterday felt like. Every doctor, nurse, aid and therapist (except the new resident) had worked with Shirley before. She completed an assessment with Physical Therapy yesterday. Whitney, the PT who worked with her last saw her just over three weeks ago when she was in the ICU and had a trachea tube in and was on the ventilator. Whitney was amazed with Shirley's progress. She got out of bed with only the slightest of assistance and then walked halfway down the hall and back.
Shirley's friend, Anisa, who is an RN on the floor was just starting the first of six days of shifts and made sure she was assigned to Shirley.
We're back on the 8th floor of the medical center, but are across the hall from the room in the previous stay. We've traded in the room with the view of the Olympic Mountains for the Northern Cascades in the background with Lake Washington in the foreground a few hundred yards from our location. The view would be idealic were in not from the looming newly renovated Husky Stadium that takes up about a third of our view. (Go Ducks!)
Additional assessments were done today with Occupational and Speech Therapists. OT will continue working with her on a daily basis, but Speech Therapy basically gave her an "all clear."
The one thing I will miss about Regional Hospital is the abundant free parking around the facility. Parking on the UW campus is $15 a day. I can get validation from the nursing station taking it to $10. I've found a secondary visitors garage that isn't staffed on weekends (gates open for free parking) and if you play your cards right, isn't staffed when the attendant takes meal breaks. We also start giving us free parking vouchers after 14 consecutive days in the hospital stays. Unfortunately, this is a benefit we've been about to take advantage of three times before.
Shirley's friend, Anisa, who is an RN on the floor was just starting the first of six days of shifts and made sure she was assigned to Shirley.
We're back on the 8th floor of the medical center, but are across the hall from the room in the previous stay. We've traded in the room with the view of the Olympic Mountains for the Northern Cascades in the background with Lake Washington in the foreground a few hundred yards from our location. The view would be idealic were in not from the looming newly renovated Husky Stadium that takes up about a third of our view. (Go Ducks!)
Additional assessments were done today with Occupational and Speech Therapists. OT will continue working with her on a daily basis, but Speech Therapy basically gave her an "all clear."
The one thing I will miss about Regional Hospital is the abundant free parking around the facility. Parking on the UW campus is $15 a day. I can get validation from the nursing station taking it to $10. I've found a secondary visitors garage that isn't staffed on weekends (gates open for free parking) and if you play your cards right, isn't staffed when the attendant takes meal breaks. We also start giving us free parking vouchers after 14 consecutive days in the hospital stays. Unfortunately, this is a benefit we've been about to take advantage of three times before.
Friday, July 26, 2013
Moving Day - on Hospital Time
I've always heard the expression "hurry up and wait" associated with the Army. But I don't know if the military has anything on hospitals in that regard.
We were told that today's move back to UW would be early enough in the day to ensure that Shirley would get transported and settled in early enough to have all the necessary assessments done before end of day. Yesterday, the social worker who schedules the transport came by to let us know that she was scheduled to be moved at 10 am. Shirley laughed and said "so you mean between twelve and one?" She social worker just smiled.
About 9:30 this morning, her nurse came by and advised that the ambulance company had called and they were backlogged with calls, so our 10 am scheduled move was being pushed back to around 11:30. THEN, about 30 minutes later, she came and said the ambulance company was so backed up that they had passed her transport over to a different company. No idea at this point if this was adding or reducing time to our wait.
Ten minutes later, the transport crew shows up and it's time to pack up. But wait, the Discharge Summary documents are still in transcription and she won't be accepted at UW without them. The ambulance crew leaves without a patient and we go back to waiting.
Finally, around noon, we get word that the summary has been completed, a copy sent to UW and we're back on. The ambulance company is called again and the crew returns around 12:40.
It seems like Shirley has got this whole "hospital time" concept nailed.
I'll post again to recap our first day back at the U.
We were told that today's move back to UW would be early enough in the day to ensure that Shirley would get transported and settled in early enough to have all the necessary assessments done before end of day. Yesterday, the social worker who schedules the transport came by to let us know that she was scheduled to be moved at 10 am. Shirley laughed and said "so you mean between twelve and one?" She social worker just smiled.
About 9:30 this morning, her nurse came by and advised that the ambulance company had called and they were backlogged with calls, so our 10 am scheduled move was being pushed back to around 11:30. THEN, about 30 minutes later, she came and said the ambulance company was so backed up that they had passed her transport over to a different company. No idea at this point if this was adding or reducing time to our wait.
Ten minutes later, the transport crew shows up and it's time to pack up. But wait, the Discharge Summary documents are still in transcription and she won't be accepted at UW without them. The ambulance crew leaves without a patient and we go back to waiting.
Finally, around noon, we get word that the summary has been completed, a copy sent to UW and we're back on. The ambulance company is called again and the crew returns around 12:40.
It seems like Shirley has got this whole "hospital time" concept nailed.
I'll post again to recap our first day back at the U.
Thursday, July 25, 2013
Last Full Day at Regional
We received confirmation this afternoon that Shirley has been accepted at the UW Medical Center Rehabilitation facility. Transportation arrangements are being made for the ambulance to pick her up tomorrow at 10 am. UW wants her to arrive early enough in the day so that they can complete assessments and begin her therapy regime Saturday.
Shirley will be released exactly three weeks after her admission--despite the first week setback from her bleeding tracheostomy. The team at Regional has been terrific. We have enjoyed her care here and look forward to coming back to visit them once she is fully on her feet.
Shirley more than doubled her steps walked again today. She even had her lunch on a table out in the Healing Garden.
Shirley will be released exactly three weeks after her admission--despite the first week setback from her bleeding tracheostomy. The team at Regional has been terrific. We have enjoyed her care here and look forward to coming back to visit them once she is fully on her feet.
Shirley more than doubled her steps walked again today. She even had her lunch on a table out in the Healing Garden.
Wednesday, July 24, 2013
A Sleepy Day
Shirley takes a boatload of pills every day. And most of the time, getting them from the on-site mediation supply or the pharmacy of the nearby parent hospital is no big deal. But last night, instead of getting one of her anti-rejection drugs as a 100mg pill, it came as four 25mg pills in a blister pack. And upon inspection, one of the "pills" was an empty space.
The nurse put in the call to the pharmacy to get a replacement pill and normally there are regular shuttle deliveries making such a 30 minute wait or so. But last night, the shuttle just didn't come. And since he had held off on her sleeping pill so that she wouldn't have to be awakened, by the time the pill did arrive at 12:30, Shirley was really off her normal cycle.
When I arrived this morning at 7:30, she was still dozing and did until well past 9. She took another nap mid afternoon and has been asleep for another hour now (7 to 8 pm). I'll wake her up soon so that there is a chance she'll be able to return to a normal sleep schedule tonight.
The staff social worker dropped by today to say he had initiated contact with the UW Medical Center Rehab program. No word back yet, but the target is for a Friday move.
Between naps today, Shirley did get up. She got herself dressed in something besides the hospital gown and brushed her teeth at the sink. She again walked out to the healing gardens. Her legs did give out on her once about 80% of the way there, and finished the journey in the trailing wheelchair. After a nice respite in the sun, she got up and walked back the same distance that she did on the way out. This amounted to at least a 50% improvement in distance walked since yesterday.
I keep teasing her that if she keeps increasing her distance by 50-100% each day, soon she'll be walking a Marathon!
Tuesday, July 23, 2013
A Release Date Given
I'm sitting out in the Healing Garden at Regional Hospital. It's a beautiful day--not a cloud in the sky (just lots of planes due to being in the SeaTac take-off path). Shirley and I are sitting in the shade across from a small fountain spilling onto river rock.
And the best part of this beautiful day is that Shirley walked from her room to the door out to the garden under her own power! Friday, it was a few steps to sit in a wheelchair. Yesterday, she walked as far as the door of her room (10 steps). Today, I'm guessing at least a hundred steps to get her to the building exit and into this wonderful oasis.
Today I attended the weekly team meeting where each discipline reported on Shirley's progress. The consensus is that she has achieved the objectives of Regional Hospital's mission and is now ready to move on to a new place to complete her rehabilitation. They have also affirmed that she has made sufficient progress so that she should be a good candidate to go back to the UW Medical Center Rehab unit.
We hope and pray that this will be the last leg of her medical journey before being sent "home" to her brother's house. We still expect that we'll be required to stay in Seattle for a few more weeks to make sure she is adjusting to home life, responding well to her medications, etc. But we are beginning to see the light at the end of the tunnel!
And the best part of this beautiful day is that Shirley walked from her room to the door out to the garden under her own power! Friday, it was a few steps to sit in a wheelchair. Yesterday, she walked as far as the door of her room (10 steps). Today, I'm guessing at least a hundred steps to get her to the building exit and into this wonderful oasis.
Today I attended the weekly team meeting where each discipline reported on Shirley's progress. The consensus is that she has achieved the objectives of Regional Hospital's mission and is now ready to move on to a new place to complete her rehabilitation. They have also affirmed that she has made sufficient progress so that she should be a good candidate to go back to the UW Medical Center Rehab unit.
We hope and pray that this will be the last leg of her medical journey before being sent "home" to her brother's house. We still expect that we'll be required to stay in Seattle for a few more weeks to make sure she is adjusting to home life, responding well to her medications, etc. But we are beginning to see the light at the end of the tunnel!
Friday, July 19, 2013
A Quart Low
Most of us an one time or another had an old car that burned a little oil. Checking the oil level at every fill-up (or perhaps more often) became part of our driving routine and when the dip stick showed the oil level below the line, we'd buy a quart of oil, fill it up and start the process again.
For some reason, this analogy popped into my mind this morning with the Physician's Assistant came by to advise me that Shirley hemoglobin level just under 7 (normal being 12 to 15). This is classified as anemia and the treatment is to supplement her blood supply with packed red blood cells via transfusion. Two units of RBC's were ordered and she is currently just finishing the first unit.
Anemia can be attributed to several factors: first, when you are sick, blood cells die faster than under normal situations. The PA said that they normal live about 120 days, but when you are sick can last closer to 30 days. Second, the anti-rejection drugs can slow the development of new blood cells. Third, they are drawing blood samples daily, which is pulling from the body pool that is already in a deficit situation in terms of blood production.
Shirley is basically over being sick, so that source will go away, and as she gets better, blood tests will be done with less and less frequency. But the diminished production due to the anti-rejection drugs will be an ongoing issue. The PA mentioned that some post-transplant patients need transfusions every 2-3 months to counter the affects of the drugs.
Today, when Shirley got out of bed, instead of just a few pivot steps to the chair, it was placed across the room. She successfully walked across the floor with the aid of a walker and then spent two and a half hours sitting upright. Each day this week has brought an incremental step of progress from the day before. Dr. Roper says her days here are numbered and early next week a plan for where to go from here will be determined.
Our hope is to return to the Rehab floor at UW. (Okay, our real hope is to be sent home, but realistically speaking, our choice of a rehab facility is UW). One of Shirley's favorite nurses from that Rehab Unit stopped by last night with her boyfriend as they were heading down for a long weekend in Oregon. It was great to see her and reinforced the desire to return to 8th floor and the care of a staff that was again this week recognized as one of the top five rehab facilities in the country.
For some reason, this analogy popped into my mind this morning with the Physician's Assistant came by to advise me that Shirley hemoglobin level just under 7 (normal being 12 to 15). This is classified as anemia and the treatment is to supplement her blood supply with packed red blood cells via transfusion. Two units of RBC's were ordered and she is currently just finishing the first unit.
Anemia can be attributed to several factors: first, when you are sick, blood cells die faster than under normal situations. The PA said that they normal live about 120 days, but when you are sick can last closer to 30 days. Second, the anti-rejection drugs can slow the development of new blood cells. Third, they are drawing blood samples daily, which is pulling from the body pool that is already in a deficit situation in terms of blood production.
Shirley is basically over being sick, so that source will go away, and as she gets better, blood tests will be done with less and less frequency. But the diminished production due to the anti-rejection drugs will be an ongoing issue. The PA mentioned that some post-transplant patients need transfusions every 2-3 months to counter the affects of the drugs.
Today, when Shirley got out of bed, instead of just a few pivot steps to the chair, it was placed across the room. She successfully walked across the floor with the aid of a walker and then spent two and a half hours sitting upright. Each day this week has brought an incremental step of progress from the day before. Dr. Roper says her days here are numbered and early next week a plan for where to go from here will be determined.
Our hope is to return to the Rehab floor at UW. (Okay, our real hope is to be sent home, but realistically speaking, our choice of a rehab facility is UW). One of Shirley's favorite nurses from that Rehab Unit stopped by last night with her boyfriend as they were heading down for a long weekend in Oregon. It was great to see her and reinforced the desire to return to 8th floor and the care of a staff that was again this week recognized as one of the top five rehab facilities in the country.
Thursday, July 18, 2013
Improving Earth Score
Dr. Roper, the medical directory at Regional, is a fun guy. Although he's been in the Seattle area for over 20 years, his Georgia accent is still thick and he has a folksy presentation style. And although I haven't heard anyone call him by his nickname, we were told it is "Bubba".
Today he walked by and told Shirley that her Earth Score was improving dramatically. Earth Score? This is a Dr. Roper indicator of how close someone is on returning to normality. He said when Shirley got to Regional, her Earth Score was zero. The following have all attributed to her "return to earth:"
Today he walked by and told Shirley that her Earth Score was improving dramatically. Earth Score? This is a Dr. Roper indicator of how close someone is on returning to normality. He said when Shirley got to Regional, her Earth Score was zero. The following have all attributed to her "return to earth:"
- She's off the ventilator and breathing room air (her score will improve more when she doesn't need any supplemental oxygen)
- She has begun eating food again - pureed for the past few days, but the speech therapist just showed up with apple slices, sloppy Joe and a turkey sandwich! She was just been cleared for a general diet.
- She began swallowing some of her smaller pills today instead of having them ground and pushed through her feeding tube
- She stood up today and was able to pivot to a chair
- The past two days, we've wheeled her out of the room and on to a deck outside her room. She provided the power to the wheels for the first part of the journey each day.
There are more points to gain on her Earth Score, but the progress over the past few days has been remarkable and we look forward to the complete return to Earth!
Huge Milestones!
My Bad--I just went to create a new post and realized that I didn't publish the post from Tuesday...sorry for the delay. GH
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Tuesday, July 16
Wow. Two days ago, I was thinking we were going to do baby steps to get Shirley off the ventilator. Maybe a few more hours each day until she eventually could go full time without having to be put back on pressure support. She went from nine to eleven to thirteen hours, so it was logical to assume the next day would bring fifteen or so.
But yesterday, Shirley surprised me by going over 30 hours and they took her off the vent. I assumed the next step would be several days of breathing the heated humidified air, but this morning they moved on to the next step, which was to insert a valve into the air line that allowed her to speak. This isn't that electronic thing that people whom have lost their vocal cords use. It was something that allowed her to speak in a near normal voice. This valve had been inserted a couple times in the past, but it had quickly tired her out.
This time, she tolerated the valve for several hours. And then at 12:30 pm, they removed the heated aerosol AND took out the trachea tube! So where there was a tube sticking out of her neck, there is now tape and gauze and within a day or two, the hole will begin to close--as long as they don't need to reinsert the tube.
As I write this, Shirley is working with the Speech Therapist who is evaluating her swallowing. They want to be very sure that anything that is supposed to go down the throat goes down the correct tube and not down her trachea. She just passed the swallow test with flying colors and is now cleared to eat pureed food.
They are now talking about releasing her from Regional Hospital within the next next few days. From here, it will be on to a rehab facility to help her regain strength. We hope to be able to go back to UW Medical Center's rehab floor, but I'm not sure if she's strong enough right now to qualify. They require the ability to tolerate 3 hours of rehab a day and with her back hurting her so much, she has been doing less than one.
That said, I know how Shirley can be when a goal is set in front of her and I would not be surprised to see big jumps in her tolerance for therapy over the next few days.
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Tuesday, July 16
Wow. Two days ago, I was thinking we were going to do baby steps to get Shirley off the ventilator. Maybe a few more hours each day until she eventually could go full time without having to be put back on pressure support. She went from nine to eleven to thirteen hours, so it was logical to assume the next day would bring fifteen or so.
But yesterday, Shirley surprised me by going over 30 hours and they took her off the vent. I assumed the next step would be several days of breathing the heated humidified air, but this morning they moved on to the next step, which was to insert a valve into the air line that allowed her to speak. This isn't that electronic thing that people whom have lost their vocal cords use. It was something that allowed her to speak in a near normal voice. This valve had been inserted a couple times in the past, but it had quickly tired her out.
This time, she tolerated the valve for several hours. And then at 12:30 pm, they removed the heated aerosol AND took out the trachea tube! So where there was a tube sticking out of her neck, there is now tape and gauze and within a day or two, the hole will begin to close--as long as they don't need to reinsert the tube.
As I write this, Shirley is working with the Speech Therapist who is evaluating her swallowing. They want to be very sure that anything that is supposed to go down the throat goes down the correct tube and not down her trachea. She just passed the swallow test with flying colors and is now cleared to eat pureed food.
They are now talking about releasing her from Regional Hospital within the next next few days. From here, it will be on to a rehab facility to help her regain strength. We hope to be able to go back to UW Medical Center's rehab floor, but I'm not sure if she's strong enough right now to qualify. They require the ability to tolerate 3 hours of rehab a day and with her back hurting her so much, she has been doing less than one.
That said, I know how Shirley can be when a goal is set in front of her and I would not be surprised to see big jumps in her tolerance for therapy over the next few days.
Monday, July 15, 2013
Vent Weaning Progress
During yesterday's post, I mentioned that Shirley was four hours into a sustained breathing test that would continue until she tired. Today, around 3:30 pm after nearly 32 hours they ceased the test and removed Shirley from the ventilator!
The next step is what they call "heated aerosol." This is similar but a little more sophisticated than the trach collar that was used at UW Medical Center. A small oxygen mask is loosely placed over the opening of Shirley's trachea tube. The room air supplemented by 40% oxygen is passed through a chamber that atomizes a pool of warm water. This makes the air warm and moist.
While she is still hooked up to a device, there are a couple of major differences. First, the heated aerosol only has a couple of dials for percentage of oxygen and flow rate of air. This is compared to the ventilator that had a large screen displaying all sorts of data points to literally monitor and evaluate every breath. In contrast, we now only have two readings from her overall vitals monitor: oxygen saturation and respiration rate.
The second difference is that instead of having a series of tube fittings connected from the vent to her neck, there is now just a mask placed around her neck over the trach tube. Previous, turning her head, could place strain on the tube and would cause irrigation (and potentially bleeding). Now, there is nothing actually touching the trach tube so she has more more freedom of movement.
Shirley continues to have back pain but was able to get up and hang her feet off the edge of the bed today. She didn't stay up for a long time, but this was her first time up in several days and so any length of time was encouraging.
The next step is what they call "heated aerosol." This is similar but a little more sophisticated than the trach collar that was used at UW Medical Center. A small oxygen mask is loosely placed over the opening of Shirley's trachea tube. The room air supplemented by 40% oxygen is passed through a chamber that atomizes a pool of warm water. This makes the air warm and moist.
While she is still hooked up to a device, there are a couple of major differences. First, the heated aerosol only has a couple of dials for percentage of oxygen and flow rate of air. This is compared to the ventilator that had a large screen displaying all sorts of data points to literally monitor and evaluate every breath. In contrast, we now only have two readings from her overall vitals monitor: oxygen saturation and respiration rate.
The second difference is that instead of having a series of tube fittings connected from the vent to her neck, there is now just a mask placed around her neck over the trach tube. Previous, turning her head, could place strain on the tube and would cause irrigation (and potentially bleeding). Now, there is nothing actually touching the trach tube so she has more more freedom of movement.
Shirley continues to have back pain but was able to get up and hang her feet off the edge of the bed today. She didn't stay up for a long time, but this was her first time up in several days and so any length of time was encouraging.
Sunday, July 14, 2013
The Weaning Process
I have been remiss in my blogging duties of late, so let me catch you up with events since late Thursday when I last posted.
Thursday, the scheduled six hour breathing test went well and was extended to nine hours. The standardized plan of going 6, 12 and 24 hours is being put to the side in favor of having Shirley go as far as she can each day without being overly fatigued. The goal will be to increase the duration daily, but not go so far as to cause her to fall back the next day.
Friday, the breathing test went eleven hours. Shirley was hoping to get to 12, but she was showing the signs of fatigue (oxygen concentration drops, respiration rate increases but breaths become shallower, so that the volume per minute is actually less).
Also on Friday, she had a CT scan of her back to see if they could see the issue causing her pain. We knew from time at the UW that there is a compression fracture of the L4 vertebrae, but is this the same issue of some thing new? I haven't heard the results of the scan yet, but they have prescribed a lidocaine patch to provide some localized relief and have scaled back on her physical therapy to avoid further damage.
Saturday, she completed twelve hours on the SBT test and is now about four hours into today's trial. Each day, a little progress towards the goal of getting completely off the ventilator.
Thursday, the scheduled six hour breathing test went well and was extended to nine hours. The standardized plan of going 6, 12 and 24 hours is being put to the side in favor of having Shirley go as far as she can each day without being overly fatigued. The goal will be to increase the duration daily, but not go so far as to cause her to fall back the next day.
Friday, the breathing test went eleven hours. Shirley was hoping to get to 12, but she was showing the signs of fatigue (oxygen concentration drops, respiration rate increases but breaths become shallower, so that the volume per minute is actually less).
Also on Friday, she had a CT scan of her back to see if they could see the issue causing her pain. We knew from time at the UW that there is a compression fracture of the L4 vertebrae, but is this the same issue of some thing new? I haven't heard the results of the scan yet, but they have prescribed a lidocaine patch to provide some localized relief and have scaled back on her physical therapy to avoid further damage.
Saturday, she completed twelve hours on the SBT test and is now about four hours into today's trial. Each day, a little progress towards the goal of getting completely off the ventilator.
Thursday, July 11, 2013
Don't Bid the Devil Good Day
I should have know better. And when Shirley eventually reads this blog, I can hear her scolding me for statements I made on Tuesday about her being on the fast track. "Don't bid the Devil good day!" she'll exclaim. Because no sooner did I mention that than she ran into the bleeding problem.
And because she had to go to the ER, the 24-hour SBT she was undergoing was ceased at about 20 hours for her ambulance joy ride. And when she returned, they gave her the rest of Wednesday off and kept her on the ventilator. This morning, they began another SBT, but were only going to plan on doing six hours and would then assess if they could/should go longer. For reasons explained below, I was not there at the six hour mark and she was on the vent when I did return, but I don't have the exact length that she completed.
The good news is that the bleeding from our tracheostomy incision has stopped bleeding. And more good news, the tremors she was having in her hands that was making it hard for her to write has passed. Her hand writing is not not only more legible, but far easier for her to write, so it is becoming a more effective means of communication when my lip reading skills fail me.
I had to make a quick work-related trip to Portland this afternoon. Fortunately, with Shirley's father still in town, he was able to keep her company for the majority of the time I was away. He has been bringing naval historical novels and has been reading to her. I'm sure she is enjoying the stories, but I would guess she would be happy to hear his voice even if he was merely reading the phone book.
And because she had to go to the ER, the 24-hour SBT she was undergoing was ceased at about 20 hours for her ambulance joy ride. And when she returned, they gave her the rest of Wednesday off and kept her on the ventilator. This morning, they began another SBT, but were only going to plan on doing six hours and would then assess if they could/should go longer. For reasons explained below, I was not there at the six hour mark and she was on the vent when I did return, but I don't have the exact length that she completed.
The good news is that the bleeding from our tracheostomy incision has stopped bleeding. And more good news, the tremors she was having in her hands that was making it hard for her to write has passed. Her hand writing is not not only more legible, but far easier for her to write, so it is becoming a more effective means of communication when my lip reading skills fail me.
I had to make a quick work-related trip to Portland this afternoon. Fortunately, with Shirley's father still in town, he was able to keep her company for the majority of the time I was away. He has been bringing naval historical novels and has been reading to her. I'm sure she is enjoying the stories, but I would guess she would be happy to hear his voice even if he was merely reading the phone book.
Wednesday, July 10, 2013
A Stack of Gauze and Two Ambulance Rides
Last night, I mentioned the issue of bleeding around Shirley's tracheostomy site. Apparently the bleeding issue continued to worsen overnight to the point that at 3 am, they made the determination to transport her to a nearby ER to evaluate and deal with the issue. I received a call around 3:15 and arrived at the hospital at 4, just as the ambulance was pulling away after dropping her off.
I was directed to the ER waiting room, where I spent an enjoyable hour with a loud, obnoxious drunk whom had been released from the ER just as I arrived.
Finally, around 5 am I was allowed to go back and sit with her. By that time, they had changed out the dressings around the trach and the bleeding had stopped. She was calm and sleepy. I spent about 45 minutes in the room with her before any medical staff came by (except of course for the registration person wanting her insurance card). When the doctor came in, she said that the bleeding had not been that bad while there and that they had already called the ambulance to return her to Regional.
Another 45 minutes and the ambulance team arrived. About the same time, the bleeding started up again. Another round of dressing changes and off she went.
The bleeding is slowing down, but is sufficient that they are preparing for a transfusion. They are also going to do a brochoscopy this morning to make sure that there isn't any hemorrhaging deeper down. They don't suspect that there is, but want to do this as a precautionary step.
They have temporarily ceased her blood thinning medications so that should help as well.
Once the brochoscopy is completed, Dr. Roper will confer with the staff at UW and decide on the next steps.
I was directed to the ER waiting room, where I spent an enjoyable hour with a loud, obnoxious drunk whom had been released from the ER just as I arrived.
Finally, around 5 am I was allowed to go back and sit with her. By that time, they had changed out the dressings around the trach and the bleeding had stopped. She was calm and sleepy. I spent about 45 minutes in the room with her before any medical staff came by (except of course for the registration person wanting her insurance card). When the doctor came in, she said that the bleeding had not been that bad while there and that they had already called the ambulance to return her to Regional.
Another 45 minutes and the ambulance team arrived. About the same time, the bleeding started up again. Another round of dressing changes and off she went.
The bleeding is slowing down, but is sufficient that they are preparing for a transfusion. They are also going to do a brochoscopy this morning to make sure that there isn't any hemorrhaging deeper down. They don't suspect that there is, but want to do this as a precautionary step.
They have temporarily ceased her blood thinning medications so that should help as well.
Once the brochoscopy is completed, Dr. Roper will confer with the staff at UW and decide on the next steps.
Tuesday, July 9, 2013
A Visit from Dad
Some say that laughter is the best medicine. Today, Shirley received a visit from her father that lifted the spirits of both immensely. Her father recently lost his wonderful companion of the last five-plus years. She had been in declining health which had prevented Art from visiting Shirley. I'm not sure which was more worried about the other, but seeing the two of them hold hands for hours was a wonderful sight that I know was mutually therapeutic.
Shirley had the last of her initial assessments when the Physical Therapist came by. Unfortunately, Shirley's back was tweaked as she was moved up in her bed which prevented them from getting her out of bed. The PT did assess her leg strength and flexibility and suggested that taking a few steps is on the near horizon.
We heard back from the nutritionist following yesterday's metabolic testing. Her daily calorie intake is being modified to 1500 calories. Her protein levels are just below the acceptable range, but the high protein tube feed formula she is on should remedy that is a few days.
Yesterday, Shirley did 13 hours on the sustained breathing test. During the SBT, they turn the ventilator settings so that she is getting no assistance besides a slightly elevated oxygen level (25% vs, 21% room air). The test was successful and after a rest night on the vent, she is doing a 24 hour SBT. If this is completed without issue tomorrow morning, they will remove the ventilator and have her breath room air that has been vaporized with additional moisture to protect her trachea.
Dr. Roper stopped by after the team met to review all of the assessments. He pronounced Shirley to be on the "fast track." That doesn't provide any guarantees about duration of stay, but does suggest that if things continue to go this well, our stay may be not much more than a couple of weeks.
The only set-back today (if you want to call it that) has to do with some bleeding around the trachea tube. The tubes attaching the ventilator to the trachea can put some torque on the tube. This causes some iritation to the area where the incision on her neck was made. And then, because she is on blood thinners (did I mention the clot in her neck?) a small bleed just keeps on bleeding, Hopefully, if the vent can be turned off tomorrow, this will allow this to start to heal.
Shirley had the last of her initial assessments when the Physical Therapist came by. Unfortunately, Shirley's back was tweaked as she was moved up in her bed which prevented them from getting her out of bed. The PT did assess her leg strength and flexibility and suggested that taking a few steps is on the near horizon.
We heard back from the nutritionist following yesterday's metabolic testing. Her daily calorie intake is being modified to 1500 calories. Her protein levels are just below the acceptable range, but the high protein tube feed formula she is on should remedy that is a few days.
Yesterday, Shirley did 13 hours on the sustained breathing test. During the SBT, they turn the ventilator settings so that she is getting no assistance besides a slightly elevated oxygen level (25% vs, 21% room air). The test was successful and after a rest night on the vent, she is doing a 24 hour SBT. If this is completed without issue tomorrow morning, they will remove the ventilator and have her breath room air that has been vaporized with additional moisture to protect her trachea.
Dr. Roper stopped by after the team met to review all of the assessments. He pronounced Shirley to be on the "fast track." That doesn't provide any guarantees about duration of stay, but does suggest that if things continue to go this well, our stay may be not much more than a couple of weeks.
The only set-back today (if you want to call it that) has to do with some bleeding around the trachea tube. The tubes attaching the ventilator to the trachea can put some torque on the tube. This causes some iritation to the area where the incision on her neck was made. And then, because she is on blood thinners (did I mention the clot in her neck?) a small bleed just keeps on bleeding, Hopefully, if the vent can be turned off tomorrow, this will allow this to start to heal.
Monday, July 8, 2013
A Busy Day
While Shirley has now been at Regional for three days, today being the first "business day" of her stay here, there has been a flurry of activity. The day has included initial assessments by Speech Therapy and Occupational Therapy, plus visits by the medical director.
The Speech Therapy session included another blue dye swallow test. Initial results were positive, but we've been told they watch her trachial suction for the full day and will then discuss their findings with her care team during tomorrow's rounds. At that time, they will determine if the test was a success and will advise us of next steps.
OT got her out of bed and into a wheel chair. She stood up with a little assistance and pivoted to the chair. Their goal was to have her up in the chair for 30 minutes, but in typical style, she stayed up for 80 minutes.
We enjoyed meeting Dr. Roper, the Medical Director. He has been at Regional for less then a year after a 20+ year career at Swedish Hospital. He is originally from Georgia and hasn't lost his drawl in his decades in the Northwest.
Currently, Shirley is in the midst of a metabolic test. A very sophisticated looking machine is hooked up to her respirator. It analyzes her exhalations and provides an assessment on her nutritional needs including percent of proteins, fats and carbs that she needs in her diet. I'm interested to see the results.
The Speech Therapy session included another blue dye swallow test. Initial results were positive, but we've been told they watch her trachial suction for the full day and will then discuss their findings with her care team during tomorrow's rounds. At that time, they will determine if the test was a success and will advise us of next steps.
OT got her out of bed and into a wheel chair. She stood up with a little assistance and pivoted to the chair. Their goal was to have her up in the chair for 30 minutes, but in typical style, she stayed up for 80 minutes.
We enjoyed meeting Dr. Roper, the Medical Director. He has been at Regional for less then a year after a 20+ year career at Swedish Hospital. He is originally from Georgia and hasn't lost his drawl in his decades in the Northwest.
Currently, Shirley is in the midst of a metabolic test. A very sophisticated looking machine is hooked up to her respirator. It analyzes her exhalations and provides an assessment on her nutritional needs including percent of proteins, fats and carbs that she needs in her diet. I'm interested to see the results.
Sunday, July 7, 2013
Settling in at Regional Hospital
Saturday, Shirley was transferred to her newest home away from home. Regional Hospital for Respiratory and Complex Care welcomed her with open arms yesterday. The facility is a small, non-profit hospital that leases space from Highline Medical Center on their Specialty Services Campus. The hospital is located a couple miles due north of SeaTac airport (yes, right on the flight path, but fortunately the rooms are well sound proofed).
With the transfer, yesterday was a rest day with no goals for Shirley other than settling her in and getting rest. But this morning, things kicked off at 8:30 with the start of their weaning process. For 6+ hours, her ventilator was turned to a setting that tracked her respiration rate, minimum lung pressure and expiration volume. The objective for today was six hours on this setting and Shirley went six and a half.
She said she could have gone longer, but tomorrow they want her to do twelve hours, so they didn't want to overdue her first day. If things go according to schedule, tomorrow she will do twelve hours off the vent and then Monday, will go 24 hours.
Shirley had an unexpected guest yesterday as Mary, her IV nurse for the past eight years dropped by for a visit. She and her husband were returning to Portland and had seen the blog post that the move was taking place. Shirley was tickled to see a familiar face, especially in light of the anxiety around moving.
My folks stopped by today as well. They are heading off on a long road trip and made their first stop to see us before stopping for their first night at my sister's in Renton.
We also received the sad news today that Shirley's father's girlfriend and companion of the last 5+ years passed away this afternoon. We all loved Margie very much and will miss her dearly.
Saturday, July 6, 2013
ICU Day 38 - Moving Day
All final hurdles appear to be cleared. The ambulance has been scheduled for 11 am and it now appears that Shirley really will get out of the ICU today and head to Regional Hospital for the next phase of her care. Despite some apprehension, Shirley now seems to be excited about the move in a positive way.
This morning, she insisted that I bring in all of her clothes that were in the car because she wanted to be transferred in her own clothes and not in a hospital gown. While perhaps not 100% practical, it is a very positive sign and everyone here is supportive.
Having become used to "hospital time," I have about as much faith in the move actually taking place close to 11 as I would scheduling an outdoor picnic in May. But any time today is fine by me.
This morning, she insisted that I bring in all of her clothes that were in the car because she wanted to be transferred in her own clothes and not in a hospital gown. While perhaps not 100% practical, it is a very positive sign and everyone here is supportive.
Having become used to "hospital time," I have about as much faith in the move actually taking place close to 11 as I would scheduling an outdoor picnic in May. But any time today is fine by me.
Friday, July 5, 2013
ICU Day 37 - A move delay
Plans to move Shirley to Regional Hospital have been put off for one day. Some routine tests on Wednesday revealed a possible pneumonia from a hospital acquired bacteria. Also, a virus which lies dormant within most of us appears to have awakened. While cultures are confirming these, a course of antibiotics and antivirals have been started just in case.
Despite these indicators showing up, Shirley's health continues to improve overall. This is purely precautionary and is not seen by any of the medical staff as a setback,.
Meantime, the typing of ventilator weaning that will be the focus of her stay at Regional is going on how. Yesterday, Shirley spent four hours off the ventilator on what they call a "trach collar" where an oxygen masked is suspended near--but not completely covering--her trach opening. They push a 33% oxygen mixture that is humidified to keep her air pipe from drying out. Today's goal is to spend 5 hours off the vent. She is currently 2+ hours into that effort.
Despite these indicators showing up, Shirley's health continues to improve overall. This is purely precautionary and is not seen by any of the medical staff as a setback,.
Meantime, the typing of ventilator weaning that will be the focus of her stay at Regional is going on how. Yesterday, Shirley spent four hours off the ventilator on what they call a "trach collar" where an oxygen masked is suspended near--but not completely covering--her trach opening. They push a 33% oxygen mixture that is humidified to keep her air pipe from drying out. Today's goal is to spend 5 hours off the vent. She is currently 2+ hours into that effort.
Thursday, July 4, 2013
ICU Day 35 - Beeping, Lots of Beeping
I'm aware that sleep deprivation is a tactic used on prisoners of war to break them down. Someone should consider locking these folks up in an ICU for 30+ days as an effective means of altering their mental state. Last night I spent the night in the hospital room with Shirley. Something I've only done three times while she's been in the ICU. I find it remarkable that anyone can get any rest in a place like this--and that's with a modified regime where they are only coming in a couple times a night to take her vitals.
The thing that drives me nuts is all the beeping. Everything has alarms and they go off for all kinds of reasons:
The thing that drives me nuts is all the beeping. Everything has alarms and they go off for all kinds of reasons:
- The monitor of her vitals signs will go off in both a yellow or red state if she goes above or below set levels. They are monitoring her heart rate, blood pressure, respiration rate and oxygen saturation. She kicks off the BP alerts a few times a day as she reaches the furthest times from her Metoprorol dosing, but the oxygen saturation alert goes off often. The probe used to check her sats goes on a finger, toe or ear lobe and is constantly needing to be adjusted. Her extremities go from very warm to freezing cold and when they get cold, or if they are bumped, you don't get a good reading and false alerts go off.
- Her ventilator monitors her respiration rate as well. It also tracks lung pressure and volumes on inhaled and exhaled air. The alerts on this monitor and louder than any other. When Shirley sleeps, sometimes her breaths become too shallow and she will set off an alert for too low for exhalations. The alarm kind of wakes her up and usually after two or three times of the beeping, she is awake enough that she resumes normal breathing volumes. This morning, she kicked this alarm off eight times between 5:10 and 6:30 am. While this loud alarm is useful to her when her volumes get low, when she gets stressed, she will begin breathing too fast. Once her respiration rate gets above 40, the same loud obnoxious alert goes off--triggering more stressful fast breathing. There is an override button on the monitor that will silence it for two minutes--usually enough time to get her breathing calmed back down.
- There is a master control unit for her IV pumps. It has a shrill quick beeping that sounds when the line is occluded; when there is air in the line; when a scheduled dose is completing or -- if the unit gets unplugged -- when the battery needs charging. Shirley is currently only using one IV pump for some antibiotics, so this one doesn't go off all that often anymore, but at the peak of her illness, she had 11 different IVs going in through three master controls and it was a nearly constant chirping of these alerts.
- Likewise, her feeding tube has a pump. Perhaps the most pleasant sounding of the chirps, this one goes off to alert if bag of nutrition formula is near empty, if the line becomes blocked, if the scheduled feeding volume has been reached or if the battery needs recharging.
- And finally, the bed itself. There are brakes on the bed to keep it in place. Whenever they are released to move the bed, it sounds like a truck backing up. There is also an alarm on the unit that serves as both the TV control and the nurse call light. In the event of a real emergency, you can yank the cord out of the wall and it sets off alarms in the hallway that send a team of people running to the room. This has never been used intentionally in Shirley's room, but the cord hang from the ceiling and about once a week gets pulled just enough to sound the alarm.
All of this leads to days and nights filled with electronic chirping and not much rest.
Plans for the move to Regional Hospital have been solidified and the move will take place on Friday. The ambulance is coming at 11 am to pick Shirley up.
Tuesday, July 2, 2013
ICU Day 35 - The LTAC
I teased you yesterday with announcement that Shirley's time in the ICU was coming to an end. Her next stop is to be Regional Hospital, a Long Term Acute Care (LTAC) facility specializing in working with patients on ventilators and weaning them off of same. It has been described as an intermediate step between an ICU and a Rehab facility for those no longer sick, but in need of acute care.
One of the admitting liaisons (a nurse practitioner by trade) came by this morning and visited with us and told us about the facility. He stayed around for rounds so he got the latest scoop on Shirley's present condition and plan for the day.
Later in the day, I drove out the the facility, which is near SeaTac airport. It is a small (about 30 beds) non-profit facility. It is not facilitated with any other hospital, but does lease space from another specialty hospital. Their medical director is a pulmonologist who was formerly the medical director for the ICU at Swedish Hospital. Regional has been in operation for about 19 years.
I received a nice tour of the facility from the Director of Respiratory Therapy. It is a really different environment from UW, but seems appropriately staffed, yet far more relaxed. While quiet busy during the day time, my guide said the place really quiets down at night--which will hopefully mean that Shirley will begin to get some much needed rest and real sleep.
The folks at Regional are expecting Shirley possibly as early as Thursday. We should learn tomorrow from the team here at UW if they are on board for that timeline.
One of the admitting liaisons (a nurse practitioner by trade) came by this morning and visited with us and told us about the facility. He stayed around for rounds so he got the latest scoop on Shirley's present condition and plan for the day.
Later in the day, I drove out the the facility, which is near SeaTac airport. It is a small (about 30 beds) non-profit facility. It is not facilitated with any other hospital, but does lease space from another specialty hospital. Their medical director is a pulmonologist who was formerly the medical director for the ICU at Swedish Hospital. Regional has been in operation for about 19 years.
I received a nice tour of the facility from the Director of Respiratory Therapy. It is a really different environment from UW, but seems appropriately staffed, yet far more relaxed. While quiet busy during the day time, my guide said the place really quiets down at night--which will hopefully mean that Shirley will begin to get some much needed rest and real sleep.
The folks at Regional are expecting Shirley possibly as early as Thursday. We should learn tomorrow from the team here at UW if they are on board for that timeline.
Monday, July 1, 2013
ICU Day 34 - The Conference
Today the road map became clearer as to what Shirley needs to do to get out of the ICU and what the next step will be after she is released. We had a troop of doctors and other hospital staff join us for the meeting in Shirley's room. The congregation included three doctors from the Surgical ICU unit, two from Nephrology, two from Pulmonology/Lung Transplant; three from Palliative Care; her nurse, a social worker and the hospital chaplain, whom has visited her several times each week.
The conference started by Dr. Sats Bhagwanjee recounting the recent victories:
The conference started by Dr. Sats Bhagwanjee recounting the recent victories:
- The General Surgery team has signed off that Shirley's abdominal issues are fully resolved
- The Neprhology team is delighted with the progress Shirley's kidneys are making and do not expect that she will need another dialysis treatment. This in turn means that both her dialysis and Foley catheters will be taken out in the next few days.
- Shirley's lungs continue to do well. She did go back on the ventilator early this morning, but the Pulmonologists said this is to be expected over the next few weeks and is nothing to worry about. They attributed the need to a combination of recent nights of sleep deprivation; a very busy day yesterday; and some additional fluid build-up around her lungs. And with her kidneys now functioning, they were able to prescribe a diuretic to help with the fluid issue.
Sats then listed the things Shirley needed to do to get out of ICU.
- Spend at least 12 hours per day off the ventilator for several consecutive days.
- Get out of bed and begin taking a few steps.
Please note that there is no more disease to treat or issue to resolve. These are about getting stronger. And the expectation is that she will be out of the ICU in between two and seven days.
And where to from here? Stay tuned for my next posting...
Sunday, June 30, 2013
ICU Day 33 - Pee, Glorious Pee!
I never thought I could get excited about urine, but after several weeks of little to no output by Shirley's kidneys, they suddenly awakened last night. This morning, they put in a foley catheter so that they could get an accurate 24-hour measurement of her output. This will help them decide if they need to continue dialysis or not.
We week or so back, she began making a little urine (like 5-10 cc's per hour), but her most recent infection sent the kidneys back on vacation. This time, we're talking some serious pee. It's been twelve hours since the catheter was put in and there is close to 1100 cc's in the collection bag. Very exciting stuff!
Shirley also had a "blue die swallow test" today. They are very concerned that someone that has gone over a month without swallowing may have some trouble "remembering:" how to do it and food or liquid could accidentally go down the wrong pipe. Especially for lung transplant patients this can be a real danger as it can lead to pneumonia.
The test consists of a Speech Therapist feeding her ice cubes that have have been coated with blue food coloring. Shirley chewed up about six such cubes, and then went on to drink several spoonfuls of similarly blue-tinted water. After the test, a suction catheter is run down her trachea tube to ensure that there is no blue showing up. Shirley passed the test--which is step one in being allowed to resume drinking and eating. Step two is tomorrow when they have her swallow some barium and do a more precise test to make sure no trace of liquid ends up in her lungs.
Shirley also got into a wheelchair twice today and went outside. The first was in the afternoon and was cut short by the unseasonably hot weather today. A second trip around 8 pm was much more pleasant and extensive in length.
She is continuing to suffer from some severe anxiety that is contributing to high blood pressure and a rapid heart rate. But the ICU medical staff is hesitant to treat it with sedatives, as that could bring back some of the delirium that she is just recovering from. Tomorrow she has a consultation appointment with the psychiatry department to see if there is something in their pharmacology arsenal that will calm the anxiety without risking the side effect of delirium.
We week or so back, she began making a little urine (like 5-10 cc's per hour), but her most recent infection sent the kidneys back on vacation. This time, we're talking some serious pee. It's been twelve hours since the catheter was put in and there is close to 1100 cc's in the collection bag. Very exciting stuff!
Shirley also had a "blue die swallow test" today. They are very concerned that someone that has gone over a month without swallowing may have some trouble "remembering:" how to do it and food or liquid could accidentally go down the wrong pipe. Especially for lung transplant patients this can be a real danger as it can lead to pneumonia.
The test consists of a Speech Therapist feeding her ice cubes that have have been coated with blue food coloring. Shirley chewed up about six such cubes, and then went on to drink several spoonfuls of similarly blue-tinted water. After the test, a suction catheter is run down her trachea tube to ensure that there is no blue showing up. Shirley passed the test--which is step one in being allowed to resume drinking and eating. Step two is tomorrow when they have her swallow some barium and do a more precise test to make sure no trace of liquid ends up in her lungs.
Shirley also got into a wheelchair twice today and went outside. The first was in the afternoon and was cut short by the unseasonably hot weather today. A second trip around 8 pm was much more pleasant and extensive in length.
She is continuing to suffer from some severe anxiety that is contributing to high blood pressure and a rapid heart rate. But the ICU medical staff is hesitant to treat it with sedatives, as that could bring back some of the delirium that she is just recovering from. Tomorrow she has a consultation appointment with the psychiatry department to see if there is something in their pharmacology arsenal that will calm the anxiety without risking the side effect of delirium.
ICU Day 33 - I need your help
It was nearly unanimous among those involved in Shirley's care that today was a good day. She was out of bed and into a regular chair twice; she stood up briefly; her white blood cell count dropped to 11 (10 and below is normal); she spent the day off the ventilator; and she worked with the speech therapist and had the bladder around her trach tube deflated for 30 minutes and was pronounced ready to do a swallow test tomorrow. All very good things.
The one dissenting voice (well, opinion at least), was Shirley herself. The extended stay in the hospital--we're now up to 41 days for this stay and 120 since February 13--is really beginning to get her down. The one bright spot in her day was a set of small photo albums that Caroline put together for her.
And this is where I'd like to request some help from her friends and family. The albums were intentionally left with room for more photos. I'd like to solicit pictures from you. Of your family, pets, time spent with Shirley, your favorite vacation spot --whatever you think might help cheer her up and remind her of better times and a something to look forward to in the future.
She has been so strong and tough throughout this ordeal, but I think she needs a little boost and photos (4x6 size please), cards or notes from you can help restore her energy. Please mail them to me:
Greg Harris
c/o Pete & Caroline Hauge
831 30th Ave. South
Seattle, WA 98144
If you prefer to email photos, please send to carolinehauge@gmail.com.
Thank you for your support. Let's remind Shirley of all the people cheering her on and help give her the boost needed to get out of the hospital.
Thanks!
The one dissenting voice (well, opinion at least), was Shirley herself. The extended stay in the hospital--we're now up to 41 days for this stay and 120 since February 13--is really beginning to get her down. The one bright spot in her day was a set of small photo albums that Caroline put together for her.
And this is where I'd like to request some help from her friends and family. The albums were intentionally left with room for more photos. I'd like to solicit pictures from you. Of your family, pets, time spent with Shirley, your favorite vacation spot --whatever you think might help cheer her up and remind her of better times and a something to look forward to in the future.
She has been so strong and tough throughout this ordeal, but I think she needs a little boost and photos (4x6 size please), cards or notes from you can help restore her energy. Please mail them to me:
Greg Harris
c/o Pete & Caroline Hauge
831 30th Ave. South
Seattle, WA 98144
If you prefer to email photos, please send to carolinehauge@gmail.com.
Thank you for your support. Let's remind Shirley of all the people cheering her on and help give her the boost needed to get out of the hospital.
Thanks!
Friday, June 28, 2013
ICU Day 32 - Sick and Tired of being Sick and Tired
Today wasn't so much as a setback as it was a stall in the steady progress of the last several days. It can best be described as one of great frustration for Shirley, who has so much she wants to say, but is so limited in her communication abilities. My lip reading remains poor, although I'm getting better. She filled two pages with brief notes, but her hands are shaking from some of the meds, so handwriting is not easy.
And there were some signs that delusion may be returning to some degree. She didn't pass her morning "CAM" exam, which is an indicator of her mental state. And this afternoon, she told me she wanted me to take her to the hospital because she was having trouble breathing. The staff attributes this to sleep deprivation and tonight she was given a sedative to help her sleep about 8:00 pm and by 8:30 she was sound asleep. I pray that she gets a good nights rest and is back on top of her game tomorrow.
We received word that on Monday, we will have a conference with the teams looking after her to discuss what lies after the ICU and what we need to get there. The meeting will involve doctors from the Surgical ICU unit; General Surgery; Nephrology and Pulmonary/Lung Transplant; as well as the Palliative Care Team and a Social Worker. Hopefully this will provide some of clarity on what we can expect in the coming weeks.
And there were some signs that delusion may be returning to some degree. She didn't pass her morning "CAM" exam, which is an indicator of her mental state. And this afternoon, she told me she wanted me to take her to the hospital because she was having trouble breathing. The staff attributes this to sleep deprivation and tonight she was given a sedative to help her sleep about 8:00 pm and by 8:30 she was sound asleep. I pray that she gets a good nights rest and is back on top of her game tomorrow.
We received word that on Monday, we will have a conference with the teams looking after her to discuss what lies after the ICU and what we need to get there. The meeting will involve doctors from the Surgical ICU unit; General Surgery; Nephrology and Pulmonary/Lung Transplant; as well as the Palliative Care Team and a Social Worker. Hopefully this will provide some of clarity on what we can expect in the coming weeks.
Thursday, June 27, 2013
ICU Day 32 - A few words from Shirley (a very few)
After spending about 24 hours on the ventilator, Shirley is again breathing on her own, She is getting a little supplemental oxygen, but the combination of a day of being able to rest with the ventilator and two successive days of drawing off 3 liters of excess fluid has made breathing much easier for her.
This afternoon, the Speech Therapist came by can worked with her a little on talking. In order to talk, Shirley needs to take a deep breath, and then the trach tube opening is covered so that when she exhales, the air passes up past her vocal chords. Her voice is very faint, and she can only utter a few words on each exhalation, but it was nice to hear her speak again. Her first words were "one, two and hello" as she was following the instructions from the therapist. When she was told to say whatever she wanted, she got out several words, but the only one I could make out was "Jessie." Jess--I thought you'd appreciate hearing that. :)
She also had her best session in at least a week with Physical Therapy. She sat on the edge of the bed for about 40 minutes and did leg lifts and various stretches.
She is also being weaning off her PCA device for administering IV pain medications. She wasn't using it very much, so they are just going to give her oral (through her feeding tube) medications, which last longer, but don't have the same immediate effect.
All in all, a very good day.
This afternoon, the Speech Therapist came by can worked with her a little on talking. In order to talk, Shirley needs to take a deep breath, and then the trach tube opening is covered so that when she exhales, the air passes up past her vocal chords. Her voice is very faint, and she can only utter a few words on each exhalation, but it was nice to hear her speak again. Her first words were "one, two and hello" as she was following the instructions from the therapist. When she was told to say whatever she wanted, she got out several words, but the only one I could make out was "Jessie." Jess--I thought you'd appreciate hearing that. :)
She also had her best session in at least a week with Physical Therapy. She sat on the edge of the bed for about 40 minutes and did leg lifts and various stretches.
She is also being weaning off her PCA device for administering IV pain medications. She wasn't using it very much, so they are just going to give her oral (through her feeding tube) medications, which last longer, but don't have the same immediate effect.
All in all, a very good day.
Wednesday, June 26, 2013
ICU Day 31 - The Road Ahead Muddies
During the previous hospital stay, the path to get out and get home was fairly straight forward: ICU; then to a general medical floor; then once Shirley could tolerate two hours of physical therapy a day, off to the Rehab unit. And on the Rehab floors, specific goals were agreed upon and once achieved, out the door you go.
This time around, the path is much less clear. The extended stay in ICU, coupled with the trach has provided some forks in the road ahead that we had not previously known about. Talk yesterday started to include the potential of a stay in an LTAC. That stands for Long Term Acute Care facility. It's the type of facility that can support a patient that has a trachea tube and may be on and off a ventilator. So if Shirley is cured of whatever is causing her white blood count to continue to run high, but she still has the potential need to go back on a ventilator, then an LTAC may be a stop on the way to home.
I've tried to be care and use words like "may" and "potential" because if she gains enough strength and the fears that she may need to revert to the ventilator pass, then the LTAC is removed from the equation.
Adding to this potential is the fact that this morning Shirley was struggling with her breathing and they put her back on the vent. She had been off it since Friday morning and had spent nearly 24 hours on room air. Fortunately, the trach makes going and and coming off the vent a simple process and my guess is that tomorrow morning they will at least test her ability to breath on her own again.
I spoke at length today with the Transplant docs about this and they are not concerned about the this. They say it is very common during this phase of recovery for a person to need a "day off" from having to breath on their own. In Shirley's case, they suspect that fluid build-up attributable to her kidneys not working at full capacity is at issue. It sounds like they are going to continue to use dialysis on a daily basis. Every other day, it will be for cleansing her blood of toxins and every day, it will be to remove fluid. They reminded me that lung transplant patients no longer have connections to the lymphatic system into their lungs. These connections help the rest of us remove fluid from our lungs. For lung transplant patients, the only way to remove fluid is through blood flow. And without kidneys, the fluid can build up making it more difficult to breath.
Shirley's hematocrit level fell for no apparent reason today. They gave her a unit of packed red cells to bring it up and will be watching it for the next day or so to see if it stays in the normal range.
This time around, the path is much less clear. The extended stay in ICU, coupled with the trach has provided some forks in the road ahead that we had not previously known about. Talk yesterday started to include the potential of a stay in an LTAC. That stands for Long Term Acute Care facility. It's the type of facility that can support a patient that has a trachea tube and may be on and off a ventilator. So if Shirley is cured of whatever is causing her white blood count to continue to run high, but she still has the potential need to go back on a ventilator, then an LTAC may be a stop on the way to home.
I've tried to be care and use words like "may" and "potential" because if she gains enough strength and the fears that she may need to revert to the ventilator pass, then the LTAC is removed from the equation.
Adding to this potential is the fact that this morning Shirley was struggling with her breathing and they put her back on the vent. She had been off it since Friday morning and had spent nearly 24 hours on room air. Fortunately, the trach makes going and and coming off the vent a simple process and my guess is that tomorrow morning they will at least test her ability to breath on her own again.
I spoke at length today with the Transplant docs about this and they are not concerned about the this. They say it is very common during this phase of recovery for a person to need a "day off" from having to breath on their own. In Shirley's case, they suspect that fluid build-up attributable to her kidneys not working at full capacity is at issue. It sounds like they are going to continue to use dialysis on a daily basis. Every other day, it will be for cleansing her blood of toxins and every day, it will be to remove fluid. They reminded me that lung transplant patients no longer have connections to the lymphatic system into their lungs. These connections help the rest of us remove fluid from our lungs. For lung transplant patients, the only way to remove fluid is through blood flow. And without kidneys, the fluid can build up making it more difficult to breath.
Shirley's hematocrit level fell for no apparent reason today. They gave her a unit of packed red cells to bring it up and will be watching it for the next day or so to see if it stays in the normal range.
Tuesday, June 25, 2013
ICU Day 30 - Failure to Communicate
I've discovered that I am a horrible lip reader. Never really had much need to develop the skill until now. But I am flat out awful at it, and now that would be the most effective way to communicate with Shirley, I really wish I was better at it.
To recap, Shirley has a tracheotomy and it prevents air from passing by her vocal cords and hence producing sound. She also is on a variety of medications that cause her hands to be a little jittery, so writing notes is a bit of a challenge.
The most effective communication method right now is the use of a large cardboard mat that the ICU has with a variety of fill in the blank sentences with multiple choice completions. E.g. "I am..." Short of Breath; Anxious; Frustrated; Disappointed; Tired... Too bad they don't have an "all of the above" option.
Today, they swapped out the oxygen enhanced trach collar for one that is just pushing humidified room air. This is exciting because Shirley has now been weaned off supplemental oxygen. This process has made her nervous. The nurses, RT's and I have tried to reassure her that even though she may feel short of breath (most likely due to anxiety), we can see on the monitors that her oxygen saturation has remained between 96 to 100%.
We received a visit today from a representative of the Palliative Care team. This further freaked Shirley out, as she had associated Palliative Care with hospice or end of life care. We quickly got clarification that the Palliative Care team hear helps patients in all phases of their illnesses deal with their hospital stay and the transitions after stay. We shared with them that our biggest frustration is that we don't have a road map of where we go from the ICU and what the criteria are for getting there. They have indicated that they will help chart that course for us.
To recap, Shirley has a tracheotomy and it prevents air from passing by her vocal cords and hence producing sound. She also is on a variety of medications that cause her hands to be a little jittery, so writing notes is a bit of a challenge.
The most effective communication method right now is the use of a large cardboard mat that the ICU has with a variety of fill in the blank sentences with multiple choice completions. E.g. "I am..." Short of Breath; Anxious; Frustrated; Disappointed; Tired... Too bad they don't have an "all of the above" option.
Today, they swapped out the oxygen enhanced trach collar for one that is just pushing humidified room air. This is exciting because Shirley has now been weaned off supplemental oxygen. This process has made her nervous. The nurses, RT's and I have tried to reassure her that even though she may feel short of breath (most likely due to anxiety), we can see on the monitors that her oxygen saturation has remained between 96 to 100%.
We received a visit today from a representative of the Palliative Care team. This further freaked Shirley out, as she had associated Palliative Care with hospice or end of life care. We quickly got clarification that the Palliative Care team hear helps patients in all phases of their illnesses deal with their hospital stay and the transitions after stay. We shared with them that our biggest frustration is that we don't have a road map of where we go from the ICU and what the criteria are for getting there. They have indicated that they will help chart that course for us.
Monday, June 24, 2013
ICU Day 29 - Contemplations
Four weeks ago, this current journey began. It was Memorial Day morning and a sunny day suddenly fell apart when Shirley went into acute respiratory failure. Since that time, she's been under constant monitoring. Even when she takes an elevator ride to Radiology, it is with a vitals monitor strapped to the foot of her bed and with a nurse and respiratory technician in tow.
Today, another attending physician rotated on to lead the Surgical ICU (SICU) team. Dr. Satish "Sats" Bagwhanjee introduced himself during morning rounds. Like each of his three predecessors, Sats brings his own style to the game. But while I've been impressed with all of them--both in terms of their dealings with Shirley and in watching them oversee the Residents--I must say this guy really clicked with me. He's got perhaps the best bedside manner of any of the physicians I've seen here. And his approach with the residents is from a conservative style of "first do no harm."
His logic being that Shirley is stable. She's sick, but not so sick that we just want to go and throw everything at her. He wants time to rule things out and make sure treatment prescribed is targeted. For that reason, today Shirley was cultured--almost literally--head to toe. The goal to see if they could isolate the whatever it is that is causing her white cell count to stay high. Today cultures were taken from her mouth, nose, skin, urine and blood. All came back negative. They held of on the trip to Interventional Radiology until these other possible sources were checked. But with the findings today, they will tap into the fluid pocket in her belly tomorrow and check it.
I've mentioned before that pain management has been a challenge of late. Today, Sats prescribed a "PCA" which is a patient initiated IV system for pain control. Shirley has a button and each time she pushes it, she gets a small dose of Dilaudid. She can administer as often as once every six minutes, but each dose is very small and they normally find that a patient needs less medication over the course of a day than if they try to provide larger doses and intervals of four, six or eight hours.
Shirley has been so uncomfortable of late, the she has been reluctant to do her PT and OT sessions. I'm hoping that with better pain control she will be more up for doing these critical exercises to help her regain her strength.
I called Shirley's transplant buddy Gretchen and her husband Walt today. I don't think they are big internet users, and I hadn't checked in with them for some time. Long time readers may recall we got paired with them a couple months ago when Shirley was in doldrums after her first go with an infection. Gretchen is also from Portland, also has Alpha 1 and also endured multiple complications after her double lung transplant back in September, 2012. When we were first introduced to them, we didn't pry too much into Gretchen's complications, but after I shared with them some of Shirley's obstacles, they shared a very similar story. Right down to emergency abdominal surgery. It was very reassuring to hear how well she was doing and that she is now walking a mile every day.
Today, another attending physician rotated on to lead the Surgical ICU (SICU) team. Dr. Satish "Sats" Bagwhanjee introduced himself during morning rounds. Like each of his three predecessors, Sats brings his own style to the game. But while I've been impressed with all of them--both in terms of their dealings with Shirley and in watching them oversee the Residents--I must say this guy really clicked with me. He's got perhaps the best bedside manner of any of the physicians I've seen here. And his approach with the residents is from a conservative style of "first do no harm."
His logic being that Shirley is stable. She's sick, but not so sick that we just want to go and throw everything at her. He wants time to rule things out and make sure treatment prescribed is targeted. For that reason, today Shirley was cultured--almost literally--head to toe. The goal to see if they could isolate the whatever it is that is causing her white cell count to stay high. Today cultures were taken from her mouth, nose, skin, urine and blood. All came back negative. They held of on the trip to Interventional Radiology until these other possible sources were checked. But with the findings today, they will tap into the fluid pocket in her belly tomorrow and check it.
I've mentioned before that pain management has been a challenge of late. Today, Sats prescribed a "PCA" which is a patient initiated IV system for pain control. Shirley has a button and each time she pushes it, she gets a small dose of Dilaudid. She can administer as often as once every six minutes, but each dose is very small and they normally find that a patient needs less medication over the course of a day than if they try to provide larger doses and intervals of four, six or eight hours.
Shirley has been so uncomfortable of late, the she has been reluctant to do her PT and OT sessions. I'm hoping that with better pain control she will be more up for doing these critical exercises to help her regain her strength.
I called Shirley's transplant buddy Gretchen and her husband Walt today. I don't think they are big internet users, and I hadn't checked in with them for some time. Long time readers may recall we got paired with them a couple months ago when Shirley was in doldrums after her first go with an infection. Gretchen is also from Portland, also has Alpha 1 and also endured multiple complications after her double lung transplant back in September, 2012. When we were first introduced to them, we didn't pry too much into Gretchen's complications, but after I shared with them some of Shirley's obstacles, they shared a very similar story. Right down to emergency abdominal surgery. It was very reassuring to hear how well she was doing and that she is now walking a mile every day.
Sunday, June 23, 2013
Wrapping up four weeks in the ICU
As I write this blog, Shirley has now been off the ventilator for 30 hours. She continues to use what they call a "trach collar," which has an oxygen mask loosely sitting over the trachea tube opening with a 30% oxygen mix blowing by. They are now beginning to talk about whether she needs the level of care provided by the ICU and it is likely that if she is able to stay off the vent again tonight that she will be transferred soon to a General Medical floor early in the week.
Her white blood cell count has continued to climb, but they conducted a CT scan of her abdomen today and found nothing to suggest an infection. They also did another culture for C DIFF, a bacterial infection, but it came back negative. The cause of the WBC rise is still a mystery with three theories in play: 1) a reaction to her tracheotomy; 2) a reaction to the removal of the inter-jugular catheter; 3) a possible small infection in her abdomen. It was suggested that since the C DIFF test came back negative that they my do a small tap into a pocket of fluid in her abdomen to test to make sure it isn't infected.
Shirley spent four hours this morning out of bed seated in a chair. I believe they will be doing another session in the chair this evening after she finishes dialysis.
They did spot a small clot forming near where the inter-jugular catheter was pulled. They have started her on an IV drip for Heparin to help dissolve it.
Her white blood cell count has continued to climb, but they conducted a CT scan of her abdomen today and found nothing to suggest an infection. They also did another culture for C DIFF, a bacterial infection, but it came back negative. The cause of the WBC rise is still a mystery with three theories in play: 1) a reaction to her tracheotomy; 2) a reaction to the removal of the inter-jugular catheter; 3) a possible small infection in her abdomen. It was suggested that since the C DIFF test came back negative that they my do a small tap into a pocket of fluid in her abdomen to test to make sure it isn't infected.
Shirley spent four hours this morning out of bed seated in a chair. I believe they will be doing another session in the chair this evening after she finishes dialysis.
They did spot a small clot forming near where the inter-jugular catheter was pulled. They have started her on an IV drip for Heparin to help dissolve it.
Saturday, June 22, 2013
ICU Day 27 - An Uneventful Day
Nothing like titling the blog uneventful and then expecting readers to get beyond the headline. Sorry about that, but it did seem appropriate. It was a rather low key day for Shirley. She did get out of bed and stand briefly in the morning, and then sat up briefly in the early evening. Otherwise, there was not much on the docket.
She continued to make small progress with her kidneys as she had regular urine output.
She is experiencing a fair amount of pain as the doctors try to wean her off as much pain medicine as possible while still giving her comfort,. Today, I think they were a little too restrictive on the scheduled pain meds and I know her night nurse is going to ask for the dosage to be increased.
For the last several days, Shirley's white cell count has been on the rise again. Today, it was 23, indicative of a lingering infection. As her belly is still sore, there is a suspicion of a pocket of infected fluid. The plan for tomorrow is to do another CT scan and if a fluid pocket is found, they will likely insert a drain on Monday.
Lung-wise, Shirley is doing great They took her off the ventilator this morning and she's been breathing through the trach tube for about 12 hours. Over the tube, they have a flow of humidifier air with 30% oxygen and she has been able to maintain 98-100% oxygen saturation. The goal was 12 hours, which she has made, but I now think they will keep the vent off overnight.
She continued to make small progress with her kidneys as she had regular urine output.
She is experiencing a fair amount of pain as the doctors try to wean her off as much pain medicine as possible while still giving her comfort,. Today, I think they were a little too restrictive on the scheduled pain meds and I know her night nurse is going to ask for the dosage to be increased.
For the last several days, Shirley's white cell count has been on the rise again. Today, it was 23, indicative of a lingering infection. As her belly is still sore, there is a suspicion of a pocket of infected fluid. The plan for tomorrow is to do another CT scan and if a fluid pocket is found, they will likely insert a drain on Monday.
Lung-wise, Shirley is doing great They took her off the ventilator this morning and she's been breathing through the trach tube for about 12 hours. Over the tube, they have a flow of humidifier air with 30% oxygen and she has been able to maintain 98-100% oxygen saturation. The goal was 12 hours, which she has made, but I now think they will keep the vent off overnight.
Friday, June 21, 2013
ICU Day 26 - Shirley Pees
I never thought I could get so excited about bodily function, but after 12 days of no activity from her Kidneys, today Shirley began to urinate. Not a lot, but it appears that her kidneys are beginning to think about getting back to work. She received a dialysis treatment again today and they will continue to plan to do so every two to three days, but the need may wane if her output continues.
Shirley is now about 24 hours out from her tracheostomy. They have had her on a pressure support breathing test for most of the afternoon and it seems to be going fine. Now that they have the trach, they have more flexibility in how they can test her breathing capacity. They've talked about removing the vent completely and just having humidified oxygen flowing. It is literally as easy as changing couplings to go between the ventilator and just an oxygen flow that they can provide her with breathing exercises as she can tolerate.
Yesterday I mentioned that she can now start eating and talking. I need to make a correction to that statement based upon my new understanding of how a trach tube works. Currently, the tube is in her trachea and a small balloon has been inflated to seal off her windpipe. Since her vocal cords are :"up wind" of the trachea site, she has no voice right now. The doctor explained to me that after about a week, they can deflate the balloon and she will be able to produce sounds.
Today has been a good day with forward progress that is very encouraging.
Shirley is now about 24 hours out from her tracheostomy. They have had her on a pressure support breathing test for most of the afternoon and it seems to be going fine. Now that they have the trach, they have more flexibility in how they can test her breathing capacity. They've talked about removing the vent completely and just having humidified oxygen flowing. It is literally as easy as changing couplings to go between the ventilator and just an oxygen flow that they can provide her with breathing exercises as she can tolerate.
Yesterday I mentioned that she can now start eating and talking. I need to make a correction to that statement based upon my new understanding of how a trach tube works. Currently, the tube is in her trachea and a small balloon has been inflated to seal off her windpipe. Since her vocal cords are :"up wind" of the trachea site, she has no voice right now. The doctor explained to me that after about a week, they can deflate the balloon and she will be able to produce sounds.
Today has been a good day with forward progress that is very encouraging.
Thursday, June 20, 2013
ICU Day 25 - Tracheostomy
After several days of discussion, today Shirley received a Tracheostomy - which is both the procedure known as a tracheotomy and the placement of a tube into the windpipe there the incision made in the neck. She remains on the ventilator, but she no longer has the intubation through her mouth. This means that as she regains her strength, she can begin eating solid foods, speaking, brush her teeth, and -- oh yeah -- close her mouth.
For most of the last three weeks, she has had a tube shoved down her throat and has had to keep her mouth open. When she did close her mouth, she'd cut off the air flow and in a matter of seconds, an alarm would sound. When she was first extubated after nine days, it took more than a day before she could work the muscles to close her mouth. This time, it has happened much faster--she came back from the OR with her mouth closed.
Work now will focus on her regaining her strength. Prior to this afternoon's surgery, Shirley spent four hours sitting upright in a chair. This was the longest single stretch that I can recall, but hopefully, to soon becomes commonplace.
Tomorrow, Shirley will have a dialysis session and will be the first time using the new tunneled catheter. Assuming it goes well, they will remove the inter-jugular catheter as well.
BTW--I am tickled that the blog continues to broaden readership from around the world. Welcome to our newest readers in Morocco, Brazil, Saudi Arabia and Latvia.
For most of the last three weeks, she has had a tube shoved down her throat and has had to keep her mouth open. When she did close her mouth, she'd cut off the air flow and in a matter of seconds, an alarm would sound. When she was first extubated after nine days, it took more than a day before she could work the muscles to close her mouth. This time, it has happened much faster--she came back from the OR with her mouth closed.
Work now will focus on her regaining her strength. Prior to this afternoon's surgery, Shirley spent four hours sitting upright in a chair. This was the longest single stretch that I can recall, but hopefully, to soon becomes commonplace.
Tomorrow, Shirley will have a dialysis session and will be the first time using the new tunneled catheter. Assuming it goes well, they will remove the inter-jugular catheter as well.
BTW--I am tickled that the blog continues to broaden readership from around the world. Welcome to our newest readers in Morocco, Brazil, Saudi Arabia and Latvia.
Wednesday, June 19, 2013
ICU Day 24 - A change of plans
When I left the hospital last night, I was under the impression that today Shirley would receive a tracheotomy today. While one is still in the near future (like tomorrow), a more pressing need today was to replace a catheter that had been put in her jugular for dialysis. The original catheter was intended for short term use (less than two weeks), and as it now appears that Shirley's kidneys will need help longer than that, they wanted to get a longer term tunneled catheter installed today.
Shirley also and an "EMG" Nerve Conduction Study today. She is showing some signs of what they call "Critical Illness Myopathy," a widespread muscle weakness that is common in critically ill patients with extended ICU stays. The test involved giving her small shocks administered from a surface probe and then from a needle inserted into different muscles and then watching the electrical impulses on a screen. It was fascinating to watch, but not very comfortable for Shirley. The two doctors administering the test were the same ones who will interpret the findings, but the said they had to go back and review them before they would be able to confirm a diagnosis. The good new was the Shirley was able to flex all of the muscles they asked her to for the test.
Shirley also and an "EMG" Nerve Conduction Study today. She is showing some signs of what they call "Critical Illness Myopathy," a widespread muscle weakness that is common in critically ill patients with extended ICU stays. The test involved giving her small shocks administered from a surface probe and then from a needle inserted into different muscles and then watching the electrical impulses on a screen. It was fascinating to watch, but not very comfortable for Shirley. The two doctors administering the test were the same ones who will interpret the findings, but the said they had to go back and review them before they would be able to confirm a diagnosis. The good new was the Shirley was able to flex all of the muscles they asked her to for the test.
Tuesday, June 18, 2013
ICU Day 23 - A Day of Rest
Not much to report today. Shirley failed another sustained breathing test this morning and they have decided to suspend attempting more until she regains some of her strength. She did receive a dialysis treatment and they took off 2.5 liters of fluid.
They have determined that a tracheotomy is going to be in her future, but as it is not urgent, it is being scheduled for tomorrow. One of our favorite Cardio-Thoracic surgeons has asked to do it.
They have resumed her tube feeding as her stomach distress is waning.
We are in this for the long haul. Right now, Shirley needs to rest and regain her strength. Today was the first of many that will have that as their primary objective.
They have determined that a tracheotomy is going to be in her future, but as it is not urgent, it is being scheduled for tomorrow. One of our favorite Cardio-Thoracic surgeons has asked to do it.
They have resumed her tube feeding as her stomach distress is waning.
We are in this for the long haul. Right now, Shirley needs to rest and regain her strength. Today was the first of many that will have that as their primary objective.
Monday, June 17, 2013
ICU Day 22 - Frustration
Today was a day of frustration and disappointment. Shirley remains on the ventilator. They had her do another breathing test this morning and she did not perform nearly to the levels necessary to be considered for coming off the vent. The doctor summed up her current condition as simply being exhausted. He surmises that the reason for the CO2 buildup yesterday was because she just didn't have the energy to exhale deeply enough.
About the only thing she seems to have energy for is for using her tongue to push her tube to the side of her mouth and then bite down hard on it. This sets off screaming alarms, first for pressure build-up and then if she doesn't let go, for too low of air volume exhaled per minute. The Respiratory Therapists were in at least a dozen times to try and secure her tube so she couldn't bite it, but to no avail.
Shirley's white blood count has come down since the antibiotics were started again. They performed a CT scan of her belly and chest looking for some sign of infection, but the scan was deemed "unremarkable."
The discussion has begun about performing a tracheotomy on Shirley, so that she can use the ventilator without having to be intubated. She has now had to have the tube inserted four times in three weeks. It is a constant effort balance ensuring she has the necessary respiratory support and the invasiveness of being intubated. A trach permits them the take her on and off the vent nearly at will. It would also allow her to speak and begin eating food. I expect that tomorrow I'll be asked to sign the consent form so that this procedure can be done.
About the only thing she seems to have energy for is for using her tongue to push her tube to the side of her mouth and then bite down hard on it. This sets off screaming alarms, first for pressure build-up and then if she doesn't let go, for too low of air volume exhaled per minute. The Respiratory Therapists were in at least a dozen times to try and secure her tube so she couldn't bite it, but to no avail.
Shirley's white blood count has come down since the antibiotics were started again. They performed a CT scan of her belly and chest looking for some sign of infection, but the scan was deemed "unremarkable."
The discussion has begun about performing a tracheotomy on Shirley, so that she can use the ventilator without having to be intubated. She has now had to have the tube inserted four times in three weeks. It is a constant effort balance ensuring she has the necessary respiratory support and the invasiveness of being intubated. A trach permits them the take her on and off the vent nearly at will. It would also allow her to speak and begin eating food. I expect that tomorrow I'll be asked to sign the consent form so that this procedure can be done.
Sunday, June 16, 2013
Back in Seattle (Greg), Back on the Vent (Shirley)
I returned to Seattle this evening after spending the Father's Day weekend with family and friends in Portland. I learned that early this afternoon, Shirley was having a carbon dioxide build-up that was unhealthy and had to be put back on the ventilator. Within minutes of intubation, she came out of the fog for the excess CO2. Throughout the weekend, her oxygen saturation level remained excellent (98-100%), but she wasn't exhaling hard enough to remove the build-up.
I spoke this evening with the on-call Resident who said that they would do some more testing of her breathing strength in the morning and decide if they can take her off the vent again or if she'll need to stay on it while regaining strength.
They also restarted her antibiotic regime today. It sounds like this was to some degree precautionary, but I'll get more info during rounds in the morning.
Shirley is again being sedated due to the tube, so hopefully this doesn't set her back too far in terms of regaining her mental faculties. We'll see where things stand in the morning.
I spoke this evening with the on-call Resident who said that they would do some more testing of her breathing strength in the morning and decide if they can take her off the vent again or if she'll need to stay on it while regaining strength.
They also restarted her antibiotic regime today. It sounds like this was to some degree precautionary, but I'll get more info during rounds in the morning.
Shirley is again being sedated due to the tube, so hopefully this doesn't set her back too far in terms of regaining her mental faculties. We'll see where things stand in the morning.
Saturday, June 15, 2013
ICU Update, Day 18
My post today is part yesterday's news and part second hand, as I hit the road yesterday for a quick trip back to Portland and haven't seen Shirley since yesterday afternoon.
As of Friday, Shirley continued to improve and hold steady on all fronts. Her most significant improvements being her increased lucidity. Every four hours, the nurses do a mental health exam, asking her to tell them her name, ask where she is, etc. In recent days, she could answer most questions, but might have to stop and think about one or incorrectly identify the city she was in. Friday, she answered every question correctly during her midday exam (I'm giving her a "pass" on the early morning one, as she was awaken out of a deep sleep).
Beyond that, in the evening, she asked her night nurse to call me to make sure I had made it home in time for the going away dinner that my parents were hosting for our two exchange students. This was truly a sign that she was remembering recent conversations and processing when I would be arriving. A wonderful sign.
Her kidneys continue to be on hiatus. She had another dialysis treatment, taking off 1.5 liters of excess fluid. The nephrologists are recommending going to treatments every other day. They suspect that her kidneys will reawaken in a week or two.
Shirley is getting stronger is is reaching the point where she can cough strong enough on her own that she doesn't require a respiratory therapist to use suction to remove congestion from her lungs.
I will be checking in with the nurses later today for an update which I will pass along.
In the meantime, I have a bucket list of things to accomplish in Portland before returning to Seattle tomorrow afternoon.
As of Friday, Shirley continued to improve and hold steady on all fronts. Her most significant improvements being her increased lucidity. Every four hours, the nurses do a mental health exam, asking her to tell them her name, ask where she is, etc. In recent days, she could answer most questions, but might have to stop and think about one or incorrectly identify the city she was in. Friday, she answered every question correctly during her midday exam (I'm giving her a "pass" on the early morning one, as she was awaken out of a deep sleep).
Beyond that, in the evening, she asked her night nurse to call me to make sure I had made it home in time for the going away dinner that my parents were hosting for our two exchange students. This was truly a sign that she was remembering recent conversations and processing when I would be arriving. A wonderful sign.
Her kidneys continue to be on hiatus. She had another dialysis treatment, taking off 1.5 liters of excess fluid. The nephrologists are recommending going to treatments every other day. They suspect that her kidneys will reawaken in a week or two.
Shirley is getting stronger is is reaching the point where she can cough strong enough on her own that she doesn't require a respiratory therapist to use suction to remove congestion from her lungs.
I will be checking in with the nurses later today for an update which I will pass along.
In the meantime, I have a bucket list of things to accomplish in Portland before returning to Seattle tomorrow afternoon.
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