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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Four Months...and Counting

June 13, 2013

Four months ago today I was sitting in the middle of a meeting in the Xerox offices in Hillsboro when I got  word that there were lungs for Shirley and we needed to get to Seattle.  I had just returned from a business trip to Maine (and had been stuck in the Blizzard of the Century) and had only slept two nights in my own bed.  Little did I know that I wouldn't rest my head on my own pillow for another four months.

And what a roller coaster ride it has been.  Off the vent and breathing out of the new lungs on her own in just 30 hours; getting out of the hospital in only 18 days after transplant.  Settling in at Pete & Caroline's.  And then the infection...back to UWMC, ten or more trips to the OR to debreed and clean her infected incision.  The gall bladder drain.  Rebab, and finally out again after another 60 days.

And then round three.  The trip to ER; the gall bladder removal; sepsis; acute respiratory failure; cardiac arrest; resuscitation; emergency abdominal surgery; dialysis; ICU Delusion.  And now, finally--and hopefully permanently--a recovery.  Slow and steady.  New victories every day.  It is a very long bridge she is crossing over, but we look forward to the arrival on the other side and a new opportunity to enjoy life without the constraints of lungs that just couldn't do the job.

Today marks the fourth day of progressively better progress.  Shirley had three different sessions sitting up in a chair--each 1-3 hours in length.  Once, she was even able to stand up from the edge of the bed on her own power.  Her speech is improving, her voice is getting stronger and her vocabulary is coming back (I was called obtuse today).

I am confident enough in her progress and the watchful eye of the staff, that tomorrow I will make my first trip back to Portland since this saga began.  Twice before I've left on business trips, but this will be my first journey back to Oregon in four months.  Even though everyone I tell about my plans is supportive of it, I can't help but feel a little guilty leaving Shirley here in the hospital.  I didn't want to work her up about it (and frankly until today, I'm not sure she would have understood me) so I won't tell her about my plans until tomorrow morning.  Thankfully Pete & Caroline and my sister Cathi and her family are in the area and will visit her while I'm gone.

And while I leave with a little trepidation, I'm excited to see how much things will change after a 48 hour absence.

ICU Update Day 16 - Another Positive Day

Shirley hasn't been sleeping well, so last night they gave her Seraquil, while allowed her to sleep quite peacefully.  They will repeat that tonight as they try to get her wake/sleep cycles regulated.

Blood chemistry overnight looked good.  Her white blood count is down to 14 and heading back towards normal range.

They tried a breathing trial this morning that was supposed to go for one hour. She did so well, they let it run for three hours and then decided to extubate her. Since around noon, she's had a an oxygen mask pushing 30% Oxygen with added moisture.  As she is becoming more alert, she is trying very hard to take it off. When I returned from a dinner break, they had restrained her arms.  She's pulling against the restraints and leaning forward trying to get the mask within reach.  I've asked them if they can switch to a canula, which she is very used to, so that she doesn't have to fight the mask.

Shirley received another round of dialysis today. They took off another 1.5 liters for excess fluid.  That's 3.5 liters (7.7 pounds) in two days.

Her mental state continues to improve.  She is nodding to answer questions and appears frustrated that she can't speak yet. I feel that's just around the corner however.  She is definitely more alert than she has been in two weeks.

They have also removed her Foley catheter as nephrology says they no longer need it to precisely measure her urine output.

About the only setback as that her stomach began to distend again as she wasn't digesting her feeding supplement as fast as they were administering it.  About 1 am, the went back to a trickle feed to allow her to catch up.  

It's nice to be able to report positive news.  I really feel we've turned a corner and with the root cause issue of the bile leak resolved, I think she'll just keep getting stronger and stronger.

ICU Day 15 - Back on the Vent

In my post yesterday, I reported that Shirley was taken off the ventilator and was breathing on her own.  That lasted just about twelve hours.  Last night, she got very congested in her throat.  She was too weak to cough and the congestion was too deep for the therapist to suction out.

They tried giving her heated moist air and a breathing treatment, to break things up.  They tipped the bed so that Shirley's head was down at about a 20 degree angle and then put it on a therapy setting that basically pounded on her back for about 20 minutes.  All to no avail.  As evening wore on, her oxygen saturation began dropping as she was not able to sufficiently exhale the carbon dioxide and was in need of help.  So just about 11 pm, they re-intubated her.

Being ventilated last night helped Shirley rest well overnight. Prior to my arrival this morning, she was trying to self-extubate using her tongue to push out the tube. In order to prevent this, they have her slightly sedated for the time being. 

Twice today, they set the vent to allow her to initiate her breathing and to give her lungs some exercise.  The morning session went okay and the evening session went quite well. But given what happened yesterday, I suspect it will be another day or two before they remove the tube again. 

Her kidneys are not yet functioning, but I spoke to the nephrologist this morning and he said when kidneys are damaged they need some down time to recover.  He estimates it will take a couple of weeks before she starts resuming normal urine output.  In the mean time, the dialysis yesterday made marked improvements based upon her blood tests this morning.  She would normally only dialyze every other day, but she is retaining fluids again, so they used dialyzed her today specifically to remove two net liters of fluids.  I asked if they could do that to me to drop a little quick weight...he didn't like my sense of humor.

While everything else has been going on, Shirley's feeding tube has been shut off or reduced volume for extended periods over the last week.  As a result, she is malnourished and some of her existing wounds are starting to deteriorate as her body isn't getting the protein needed to heal.  Nutrition was the number one goal for today and they now have her up to their target rate of 75 cc's per hour on a high calorie supplement.

Between getting some nutrition and getting the toxins out of her body (via both the successful surgery Saturday and the dialysis), Shirley's mental state is beginning to improve. There is a sparkle back in her eyes and she is attentive and tracks you as you walk across the room.  She will wiggle toes and squeeze hands on request, but she still isn't nodding to reply to questions yet. 

From what the doctors have said, I'm thinking she probably has at least another week in ICU.  Then probably more time on a medical floor and then likely back to rehab.   

ICU Day 14 - Signs of Improvement

What a difference a day can make.  By no means are things back to normal yet, but after all of the drama and excitement of yesterday, it feels very good to give a positive report on Shirley's progress.

Shirley is again breathing on her own, the breathing tube being removed at 11 am this morning.  She does have a lot of mucus build-up in her throat that she is not strong enough to cough up. This evening, they placed her on a mask piping in warm, moist air.  As I write this, they are administering an inhaled medication to break up the mucus.  Her bed is titled head down about 20 degrees and is percussing to to help shake out whatever is plugging her up.  As the doctors point out, the build-up is in her throat, not lungs, but it is still something to be dealt with.

Her surgery yesterday seems to have done some good. Her belly is not as painful, nor distended. They placed a small drain and the fluid coming off is what would be expected post-operative with no signs of bile.

Shirley had her second round of dialysis this afternoon,.  She tolerated the procedure well.  We'll have new blood chemistry reports in the morning, but her dialysis nurse said that if her urine output increases, that's a good sign that the dialysis did its job.  So far, her output is up only slightly and she is beginning to puff up from retained fluids again.  We'll see what the doctors have to say in the morning about that.

Finally, her cognitive skills seem to be taking an upward tick.She still doesn't seem to recognize some familiar faces, but is tracking with her eyes, wiggling fingers and toes on command and gave the doctor a thumbs up earlier today.  All encouraging signs of progress.

We may not be out of the woods yet, but we think the forest is beginning to thin,  Thank you once again for your continued good thoughts and prayers.

Greg

Emergency Surgery

Following this morning's cardiac arrest, doctors were very anxious to attack so of the potential root causes that may have put her in such a tenuous situation.

First and foremost on the list is the concern of bileous fluid build up in her abdominal cavity and a potential infection within.  Yesterday's tap pulled off 750cc just by releasing pressure, but there was thought to be much more and a source needed to be determined.

Shirley was in a very weakened state and the conservative approach would have been to do the surgery laproscopcially.  However, since they were on an exploratory mission, there was concern that laproscopy wouldn't find the source and she was too weak to undergo multiple surgeries. Hence, a decision to use a larger incision to improve the chances of finding the problem was recommended.

Shirley is now out of surgery. They did find a couple of small bile leaks and these were closed off. The surgeon said they removed about two liters of fluid--mostly bile, a very small about of blood from her abdominal cavity and gave everything a good once-over.  She is now back in the room and resting comfortably.

A dialysis machine is on the way up and they are going to run it for about two hours today and three tomorrow.

Now we wait.  They are going monitor her chemistry closely and hope that this gets her over the hump and starts to reverse the recent downward trend.

Coding

This post will be brief, but I felt important to get posted so that your healing thoughts and prayers can again be extended Shirley's way.

This morning at 5:45, Shirley stopped breathing and had to be resuscitated via CPR.  She has been intubated once again.

Things have calmed down. There is only one nurse in the room right now at 7:30 compared to the 21 medical professionals that somehow moved about without crashing into each other or the carts (ventilator, crash card, EKG, ultrasound) that were squeezed into the room.

I will post again later today as we learn more about what triggered this event and what steps next await Shirley.

Greg

ICU update - day 12 - 100 Days in the Hospital

This is an anniversary I hoped never to celebrate.  Since being called up to UW Medical Center on February 13, Shirley has now spent 100 of the past 114 nights in the hospital:
--19 for the initial transplant (actually 18 post transplant, plus the night before as we waited for the operation)
--61 days due to the infection in her incision
--And now we are at the 20th day for this latest round which has included the removal of her gall bladder; unknown infection - probably in her abdomen; likely pneumonia; acute respiratory failure; ICU delusion and now injury to her kidneys.

This is not the recovery we signed up for!

The frustrating (and yet fascinating) thing about the last few weeks is being witness to the incredible balance that is the human body.  I'd listened to doctors debate the trade-offs:

• Too much fluid causing pressure and potential lung damage vs. negative impact to the kidneys cause by aggressive diuretics.
• Pain control for Shirley's obvious discomfort over limiting the factors that may be impacting her current mental state.
• Whether to administer contrasting fluid to aid in radiological diagnoses vs. the potential damage the contrast can do to already weakened kidneys.

Here's today's update:

Breathing and lung function continue to be doing well.  Hooray for small victories!

They did another CT last night (without contrast) do see if there were any identifiable issues.  Radiology found a pocket of fluid that caused them some concern.  After much deliberation, they decided to draw off some of the fluid by inserting a needle into her abdomen and then collecting the pressurized fluid in a bottle.  This procedure relieved her of 750 cc (that's a wine bottle) worth of fluid.  They termed the fluid "bileous," meaning that there is some sort of leak in her digestive track.  The general surgery team is now consulting with the GI team to determine next steps.

Pain control is becoming an issue as they attempt to steer Shirley away from narcotics because it can add t the delusions. Unfortunately, she is not yet speaking, nor will she point to specific areas that are painful.  She just has this very sad/distressed look all the time.  They switched her over to Lortab for pain control and are giving scheduled doses to try and give her some relief.

Renal challenges continue.  Blood tests show continually rising levels of certain toxins that would normally be filtered by the kidneys.  They are now very focused on minimizing impact to to her kidneys as they outline her treatment plan.  There was a consult with Nephrology today to get their input and advice.  Tomorrow or Sunday they will let us know if it makes sense to put her on dialysis while her kidneys heal..

ICU Update - Day 11 - Slow Progress and Some Concerns

Shirley's breathing without the ventilator has stayed steady.  She is using only one liter of supplemental oxygen and her respiration rate is acceptable (around 30) with very good oxygen saturation.  That's the good and most important news.

She isn't able to swallow yet, so they inserted a feeding tube that they are using to give her nutrition and most of her medicines.

Her mental and neurological faculties are improving slowly.  Last last night, she lifted both arms and crossed them.  This morning, she was able to tell her nurse her name (although her voice is very hoarse from 9 days with a tube down it), and waved good bye when her night nurse left.  A team from Neurology came down and gave her an assessment and was satisfied with her progress that they cancelled her MRI.

Concern now turns to her renal function.  Her blood chemistry is showing elevated levels of creatinine. This can be attributable to several factors,the most likely of which was the aggressive diuresing down to dry out her lungs.  But they are also worried about an elevated white blood cell count which could mean another infection lurking.  She was just brought back from a CT scan of her belly--the ICU docs suspect she may have a troublesome build-up of fluid in the area where her gall bladder was removed. We should hear the results in the morning.

Meanwhile, we continue to wear gowns and masks in the room due to the suspicion of a MRSA infection. But the blood cultures haven't proven it to be an issue yet and I suspect tomorrow they will lift her isolation and chalk the nasal swab up to a passing germ that they happened to catch in her nose.

Thanks once again for all the support.  I apologize that I haven't been able to respond personally to every contact personally.  There are so many people checking in that this blog is the most efficient way to get the news to everyone.
Greg

ICU Day 10 - What's Next?

Back at the beginning of May, I was wrapping up a project that I had been working on and was a little unclear on what my next assignment was going to be--how many clients will put up with their project manager working remotely from a hospital room?  About the same time, I was reminded that it was time to change my password on my client-provided laptop.  It seemed appropriate to choose "WhatsNext?" as my password (since changed) due to all the workplace ambiguity at the time.

While the work picture cleared up quickly (my client signed me up for another year-long project), the phrase "What's Next?" continues to haunt us in terms of Shirley's recovery.

Yesterday I reported that Shirley has become very non-responsive.  There are a few things she will do:  wiggle her toes; look at you when you call her name; sometimes she will nod or shake her head to answer a question, but not always.  She seems to have very little muscular control over her arms.

This evening, a CT scan of her head was ordered and then a neurologist was called in for a consult.  The preliminary read on the CT did not show anything obvious that could be causing this state and the neurologist could offer no theories either.  He left telling me that he would consult with the ICU doctors but his recommendation was going to be an MRI in the morning if Shirley's condition is not improved by then.

On a positive note, after a 3-hour successful breathing test, the team decided to remove Shirley's breathing tube.  For awhile, it looked like they might need to put it back in, as she was basically panting for a couple of hours. But then she settled down and is now down to a respiration rate under 30 breathes per minute and maintaining excellent oxygen saturation levels with a small amount of supplemental oxygen.

The final "What's Next?" for today is that this morning I was instructed to wear a protective gown, mask and gloves while in the room. It turns out that in a routine testing of all patients on the floor, they detected MRSA--a resistant strain of staph on a nasal swabbing they did the other day.  They are now culturing out blood samples to see if it is in her or was just a passing bacteria that got caught on the swab.  Fortunately, Shirley is already on one of the few antibiotics that works against MRSA, but it's just one more bump someone put in the road to recovery.

Thank you for all your continued prayers and notes of encouragement and support. I cannot tell you how important these are for both of us.

ICU Day 9 - Ups and Downs

I need to remind myself that progress in the ICU can be slow. Yesterday was such a quantum leap forward from the prior, that I fooled myself into expecting the same trajectory to continue.  My arrival this morning quickly dispelled any such hope.

Before I even saw her, the overnight nurse, Javinder, told me that she had not slept at all overnight.  When I went in, Shirley's eyes were open and she was staring straight ahead.  She didn't respond to my greeting and had to be coaxed into squeezing my hand.  She was unresponsive to the doctors as well.

At this point, I'm hoping that she is just exhausted from a busy day and being up all night.  They have prescribed a sleep aid for tonight, so that hopefully she'll get some quality sleep and return to yesterday's form on Wednesday.

But despite her foggy state, they conducted another breathing test and she did the best yet.  One of the key readings they monitor is her PVe, which is the volume of air on expiration.  Yesterday, she could barely manage 100 cc's, which was just over a third of the volume (270cc) that was being administered by the vent.  That test was halted at just over a couple of minutes.  Today, she sustained a PVe range between 250 and 270 for over 30 minutes.  She eventually had a coughing fit--or as close to one as you can on a vent--which ended to test. I don't know if she could have gone further, or if the cough was because she had given it her all. In either case, it was a huge improvement and very encouraging.

Shirley also got out of bed and stood once today.  No attempt was made to walk but she stood up as her bed was remade.

As I write this, I am thinking back to exactly eight years ago when Shirley and I had our first date.  I some ways it seems like it has been much longer and and in other ways, those eight years has just flown by.  Happy Anniversary my love!  

ICU Day 8 - lots of good news

I am so delighted to be reporting good news.  Today really has the feeling of turning a corner.

When I arrived at the hospital this morning, Shirley was awake and very alert.  Her day and night nurses were just beginning their hand-off and Shirley listened inventively--much of what was reported having happened over the last week being news to her.

In the prior few days, when Shirley was awake, you could ask her a yes/no question and get an head nod with her response.  Today, she is using a pad of paper and writing notes.  And the motor skills have improved during the course of the as she's gone from barely able to hold on to a large pen, to being able to hold a normal-sized pen and write relatively legibly.

Shirley also got out of bed twice today and stood beside the bed for several minutes.  On the second try, the therapist asked her to shift her weight from foot to foot.  While holding on to a walker for support, she danced a little jig.  I was not able to get my camera into video mode fast enough, but I will be ready for the next time!

Shirley continues to make great progress on her fluid retention removal.  Today was the first day that the discussion included talk of what would need to happen in order for her ventilator tube to be removed.  We're still probably a few days away, but it sounds like the tube could be out before the weekend.

ICU Update - Day 7 (Sunday)

I will apologize in advance for the focus on bodily functions in this posting.  There is so much focus, that I deliberated on entitling it: No Puke; More Poop.  So if you don't want to hear more, that's the Reader's Digest recap.

Yesterday, due to vomiting issues, they had stopped Shirley's tube feeding and there were growing concerns of some sort of bowel obstruction.  I'm happy to report that things are returning more to normal now and she is having bowel movements again.  Her vomiting has also stopped and they have resumed tube feeding at a trickle to ensure that things are working.

They tried another breathing test this morning, but there is still too much pressure on her lungs and too much fluid within the lung tissue.  In normal people, there are vessels that are part of the lymphatic system that can draw this excess fluid away.  However those vessels were attached to Shirley's old lungs, not the new ones.

The doctor said today that one way to compensate for this is for her to have lots of protein.  Apparently, protein in the blood helps as some sort of attractant and can help pull away the moisture.  Of course, consuming protein means having to intake food--and keep it down, so the pace that they can draw off is slow.

ICU Update - Day 6

I wish I had encouraging news to report, but things seem to be either the same or getting worse.

I mentioned yesterday that Shirley had thrown up a couple times yesterday.  That has continued and they have now ceased the tube feeding and pills that were being administered orally (ground up, mixed with water and sent into the feeding tube) are again being administered via IV.

This afternoon, they took her down for another CT scan of her belly and observed some sort of blockage that is likely at least partially to blame for her abdominal pain.  The report I saw was preliminary and I haven't spoken to the doctors about it yet. I do know that they weighing the options of treating it surgically against less invasive but perhaps more prolonged methods of resolving.

Shirley's cousin Diane and her husband Merle came up to visit this afternoon.  I think if was very therapeutic to see familiar faces, even though I got the evil eye--I don't think Shirley wanted anyone to see her in her current state.  Although Shirley can't talk, it was clear that she understood who was visiting and responded with head nobs to questions.