Friday Update - ICU Day 5

Not much new change to report today:

Shirley's urine output did not meet their targets: net down ~500 cc versus target of 2 liters. Lasix doses has been increased to help relieve her fluid retention. They are also looking at ways of being more judicious in her IV input to help with this equation.

They tried another breathing pressure test this morning.  The metric they are using for this test is called PEEP:  Positive end-expiratory pressure.  This is a measure of pressure above atmospheric pressure that remains in your lungs when you exhale. It's the pressure that keeps your lungs from collapsing (or so I understand).  Us normal people have PEEP readings in the range of 3 to 5,  The ventilator is set for PEEP = 5 right now.

For the test, they changed the PEEP setting to 25.  The vent was changed so that it waited for Shirley to initiate the breath, then provided the extra pressure to keep her lungs inflated.  Yesterday, they tried the test with PEEP set for 20 and she was not able to do it.  Today, with it set to 25, she was able to get in 20 minutes of self-initiated breathing.

Since they now have the central line out of her groin, they got her into a sitting position today.  They have a sling under her bedding and an overhead lift that allows them to get her out of bed and sitting in a hammock-like contraption (See photo).  This is helpful for her circulation as well as keeping her muscle tone.

Her belly is still firm and tender and while the labs have not shown any confirmation of infection, they did another X-ray but it showed nothing that is prompting the team team to want to do anything further at this point.

The wait goes on.

Shirley "getting a lift" 

Day 4 in the ICU - Thursday Update

Shirley rested well overnight.  Urine output is up, which is good, although it is going to take 4-5 days to net her back to the fluid level she should be at.  They have set a goal of two liters net output per day and they will continue Lasix to hit this target.  As of late afternoon, she was only down 430 cc's, so they were upping the Lasix dose.

I sat in again on rounds--and think I understood 80% this time.  They continue to treat her with three broad-spectrum antibiotics two for potential lung infection and one aimed at her gut. Still no identifiable cultures. They said today that she was on some antibiotics at the time the cultures were taken, so they may never have a definitive smoking gun.  They are going to keep her on the antibiotics for a 14-day course.

Her lungs are improving but are still not flexible enough. They did a test this morning where they changed the ventilator settings so that she was initiating the breaths and the vent was helping hold the pressure.  She was able to do it, but was uncomfortable for her.  They returned her to the former settings and will try this test again tomorrow.

Her BP is running high.  When she was hit with the sepsis, it was critically low and they had her on meds to bring it up. That issue has passed and they have resumed the beta blocker Metoprolol to control her pressure.

This afternoon, they decided to inset a Low Flow Tunneled Catheter instead of the PICC line. The insertion was done by the Interventional Radiology team in the IR unit instead of bedside.

The next few days are likely to be more of the same:  rest and attempt to get more liquid off. I've included a photo I took of her hand this evening. You can see how fuffy it is and shows the amount of fluid she is retaining.

ICU Update - Day 3

Shirley rested comfortably overnight Tuesday.  This morning, they started weaning her off the Versed and are changing the settings on her ventilator so that they can see how she is breathing on her own.  By evening, she is  40% oxygen (the atmosphere is 21%). They also modified the ventilation pattern to more closely match her natural breathing.  

This afternoon, they did some tests where they were able to evaluate her breathing capability and such things as the elasticity of her lungs.  The results showed that she was not ready to breath on her own--her lungs being too stiff.  I asked the doctor if he could predict how much longer she would need to be on the ventilator and he refused to speculate. He said it could be as soon as tomorrow, or several months.  I'm keeping my fingers crossed that it is days away and not longer.

One thing everyone agrees on is that she needs to get some fluids out of her system. During a 24 hour period Monday-Tuesday, she was given over 7 liters of fluid and during the same period, only urinated 240 ccs.  For those not up to snuff on their metric system, that mean she retained over 6700 cc's (about 7 quarts).  She is all puffy and the additional fluid is undoubtedly contributing to pressure on her lungs.

They began administering Lasix to diurese her today and she is starting to make some progress on getting rid of some of the fluid.  There is so much though that they can't get it all of rapidly without doing harm, so this will be a multi-day process to get her back to normal

They also tried to insert a PICC line today to replace the central line currently in her groin.  Unfortunately, the additional fluid and her puffiness prevented them from being able to locate an artery to tap into.They will try again once the fluid build-up diminishes.

With the Versed wearing off, Shirley came around a few times today and was able to nod and squeeze hands to answer questions. Jessie called from Korea and when I held the phone to her ear, her eyes welled up with tears.  It's very encouraging to see these little signs.

As I was leaving tonight, they were going to give her more Versed to allow her to sleep restfully and will then ease off again in the morning.

Thanks once again for all the well wishes.  I'm sorry I'm being in responding to the individual notes and messages. Please know they have been read and are very much appreciated.

Greg 

Tuesday - Day 2 in ICU

Morning Update:

I got to the hospital in time to talk to the overnight staff.  For the most part, Shirley had a restful evening, as they went from giving her Versed injections when she started to wake up, to infused doses so that she is consistently sedated.

They did a CT scan of both her chest and gut overnight.  The suspicion was that the primary infection may be coming from the area of her gall bladder surgery.  They did find a pocket of fluid in that area that had them discussing putting in a drain tube this morning, but by later in the day that had been ruled out for now as having more risk than benefit at this point.  

The scan of her chest suggested there may be infection in both of her lungs and they were talking this morning of this being the potential primary infection source.  Because of this, they have backed off on the pressure on the ventilator so as to not cause any damage.  They have also been able to continue to ratchet down the percentage of oxygen in the vent, going from 100% yesterday when she first reached ICU to now 50% with goal of reaching 30%.

The doctor I spoke to this morning says the condition of her lungs is a little worse today than yesterday, but this is to be expected with the normal curve for what is has.  He also reported that beyond that, things were doing quite well.  They have been able to reduce the amount of the drug they are using to help maintain her blood pressure ("Levo").

They givie her a unit of blood because her hematocrit levels were low.  

I was invited to participate in the morning rounds with her medical team--a group of about 10 people.  While perhaps it was because on her previous floor they rounded before I normally got to the hospital, I was very pleased to be able to hear first-hand the report from the various team members.  I was also a little pleased with myself that I was able to understand about 70% of what they were saying. :)  They were very gracious and asked me if I had any questions.

Shirley had an echocardiogram later in the morning and it showed that her heart looked relatively healthy (that's all the technician would commit to until the reports were examined by a doctor.

Today has been all about letting the medications do their thing and Shirley getting rest and the strength she needs to fight this.  No one is committing to a time table, but it sounds like she'll be kept on the ventilator (and hence sedated) for another couple of days.

Tomorrow, they will place a PICC line in her neck, which is a longer term option and more preferred to the arterial line currently in her groin.

It's Really Not Fair

Shirley has been stabilized and is resting under sedation in the Intensive Care Unit.  After all that she has been through over the past three and a half months, I am wondering when she is going to catch a break and have things go easy for her.  It appears that isn't going to be any time soon.

The verdict is still out on exactly what set off the episode this morning.  A list of lab requests that scrolls two-plus computer screens are in process of being cultured.  What they have deduced based upon her symptoms is that it is likely a bacterial infection, and they are treating her for sepsis. 

In addition, they also believe she is dealing with Acute Respiratory Distress Syndrome (ARDS) a condition that is often associated with other serious illnesses or traumas.  Both sepsis and ARDS are very serious and can be fatal if not treated aggressively.

Currently, the plan is to keep her sedated for a few days while a ventilator does her breathing for her.  They are providing her with IV antibiotics to fight the infection as well as numerous other mediation to help maintain her vitals in the appropriate ranges.

It is a little after 11 pm and they are talking about doing a CT scan of her abdomen tonight to see if there is any sign of an infection in the region where her gall bladder was removed on Thursday.  She had been complaining of abdominal pain and this seems like a logical place to start their investigation.

Thanks to all whom have called, emailed, sent texts or commented on Facebook or on the blog.  It is good to know some many people are sending positive thoughts our way.  I'm sorry that I haven't been able to pick up every call or respond directly to every message.  This forum provides the best way to reach the widest audience.

If you have questions, please feel free to use the "add a comment" option at the bottom of the page. I would be sure to respond to these as I'm sure many people have the same questions and would appreciate the dialogue.

I will provide at least one update tomorrow.

Greg

A Frightening Morning

I am blown away by how quickly things can change.  Late last night, Shirley was up and wanted to take a walk to the other end of the hospital to visit the nursing staff on the rehab unit where she spent two weeks.  On the walk over, she commented that she felt better than she had for a week and hoped to be released in the next day or so.

It is worth mentioning that she has been on supplemental oxygen. This was due to the fluid build-up in her body and the pressure this was placing on her lungs.  She was getting IV diuretics and they were proving to be successful in helping her shed body fluid.

Then this morning, just over eight hours after our walk, she woke up in a very confused state.  She was combative and was shouting out contradictory statements: Hot!/Cold!,  Hold my hand/Don't touch me!, would ask a question and then say "Shhh!" when you attempted to answer.  And in between these statements, her eyes would roll back and she'd fall back asleep.

This went on for several minutes, after which time, a nurse came in to take her vital signs.  Shirley fought us as we put a pulse-ox reader on her finger and the readings were alarmingly low.  Her O2 was turned all the way up without improvement. The cannula was replaced with a mask, and then a bag so they could assist her in breathing.

Pages went out over the intercom for various teams to come to the room STAT.  The crash cart was requested to be at the ready.More and more medical staff arrived.  At one point,there were at least a dozen doctors, nurses and technicians in the room and nearly as many more standing by outside running samples to the lab and bringing in supplies and drugs.

She is now intubated and has been moved to one of the ICU units.  I just gave the green light that they have a central line inserted and I am being allowed to go in and join her.  I expect to provide an update later today.

Please keep Shirley in your prayers.

A successful surgery

A long day for Shirley has ended successfully.  Her surgery was originally scheduled for 1:15 this afternoon and in the early morning she was quite anxious.  The thought of waiting for many more hours was weighing heavy on her.  Then, just around 10 am, the nurse got a call that the operating room was available early and she was quickly rushed downstairs.

We were told that the OR had been reserved from four hours--but that it shouldn't take nearly that long.  She was wheeled out of Pre-Op around 11:00.  I then ran off to to try in vain to locate my cell phone that I had lost last night. I returned to the hospital and did a couple of conference calls that ran until nearly 4:00.  At that time, I ran down to the Surgical Waiting Room where they have a monitor showing that status of each surgical patient.  It showed that she was in a recovery room, so I headed over there to see her.  The receptionist told me that she had been in surgery until 3:40 and at that time was not yet awake.

I was allowed to see her around 4:40 and she was awake but groggy. I spoke to the general surgeon who did the laparoscopy.  She said that Shirley's gall bladder was quite swollen and that there were "lots" of stones.  She was concerned enough that they brought in a liver specialist to review things and they considered abandoning the laparoscopy in favor of an open incision.  In the end, they were able to get the gall bladder out and did some sort of trace that confirmed that there were no stones "downstream" that would cause further problems.

In addition to the gall bladder removal, the Cardio Thoracic team was doing a final clean-out and  close of her clam shell incision.  I didn't speak with the CT docs, but the general surgeon reported that they had filed down the one rib that had kept one spot from completely closing and then had sutured over this spot. I'll get the first-hand report in the morning.

Gall Bladder Surgery Scheduled

For those that have been following this blog for the last few months, you may recall that there have been issues with Shirley's gall bladder.  They inserted a tube to drain it when it was several times its normal size and left the tube in for quite some time.  Only last Friday, they finally removed the tube and declared it healthy and not needing to be removed.

Now, after being sick on Sunday, and the numerous tests (2 ultrasounds, CT scan, MRI, plus labs on all bodily fluid) there are several gall stones present and surgery has been scheduled for Thursday.

Shirley seems relieved that there is a root cause for her discomfort and is optimistic that this will resolve some of the recurring issues she has been having.

Shirley Update

Many of you have been emailing/calling/texting for an update on Shirley's condition.  I thought it best that I get another blog post out rather than try to respond to all the single-threaded queries.

Following a CT scan late last night and an early morning follow-up ultrasound, they have determined that she has gall stones.  This is likely the cause of her nausea and other and related discomforts.  Now that they have a cause, the gastroenterology team is being consulted on how to best treat the problem.  The likely long term solution will be to remove the gall bladder, but they hinted that some less invasive procedures may be used this time to deal with the stones.  We expect to hear their plan of attack tomorrow.

During the review of the CT scan, they also noted a compression fracture on her L4 vertebrae.  This would be a likely cause of the back pain she has been enduring for the last few weeks.  The heavy doses of prednisone she has been taking can lead to osteoporosis, which may have contributed to the weakening of her bones.  They say there isn't much they can do for this.  Pain medications to ease the discomfort and exercise are their recommendations.

Thanks to all for your continued concern and support. One of these days, we're going to get out of here and get back home!

Back in the hospital (again)

Someone today described post-transplant patients as the "VIPs" of the hospital. If anything happens that is out of the ordinary, they want to know about it and tend to act quickly and aggressively with the treatment. This morning, Shirley woke up feeling nauseous and threw up a few times in the early morning hours.  Vomiting is on the short list of "if this happens, call us right away" events.

So we woke up the Transplant Fellow about 7 am and she told us to go to the ER.  They have a triple concern of wanting to make sure that nothing was aspirated into the lungs; making sure that her anti-rejection drugs can be consumed and absorbed; and also want to pinpoint the cause of the distress.  First order of business was getting her stomach settled so that she could take her morning dose of anti-rejection medications.  Two rounds of IV medications and she was able to get her morning doses down about a half hour behind schedule.

But numerous tests failed to pinpoint the cause of her throwing up, so she has been admitted back into the hospital (this will be night #80 since the transplant call). So far today, she's been seen by a dozen doctors (ER; Cardio Thoracic; Transplant Team; Internal Medicine; General Surgery).  They did find a minor infection during a Urinalysis which has caused them to start an IV antibiotic regimine. They also noted tenderness around the site where her gall bladder tube was removed Friday. They have ordered a CT scan for later tonight to see if there is any infection near that site.  

I'll provide an update once we get to the bottom of this mystery.

Adjusting to life away from the hospital

One week ago today, Shirley was released from UW Medical Center and the adjustment to life in our temporary home with her brother's family is going well.  The first few days reminded me of brand new parents coming home with a new baby, where every little thing results in a call to the doctor.  Shirley's apprehension about a recurring incident of infection was completely understandable, but did result result in a false alarm return trip to the ER on Thursday to validate that her wounds were healing properly and that there was no sign of infection.

Friday brought another scheduled trip to the hospital.  This time, for what was supposed to be a dressing change for her wound vac.  But when they removed the bandaging, it was determined that the vac had done as much as it could and that it was time to move on to the next phase of wound dressing.  The wound nurse used some special gauze that was impregnated with silver. The silver has powerful antibiotic properties.  She also gave us supplies to continue daily dressing changes with this gauze at home.

For those keeping score at home, with the wound vac removed, Shirley has only one more tube to be removed.  She has an appointment on Friday with the general surgeon and if there are no issues prior to that related to her gall bladder, they will remove the drain tube and she'll be tubeless for the first time since March 9!

Although Shirley's strength and energy level are building, she still is in recovery mode and is needing plenty of rest each day.  We spent a relatively quiet weekend mostly at Pete's house, but we did get her out of the house on Sunday (Mother's Day) for a trip to a Salon for a pedicure. This was a gift to her from her daughter, Jessie and was enjoyed very much.

Monday Shirley went back to the hospital for a check-in with the thoracic surgery team to inspect her wound.  There is one spot that is still pretty deep that they are now talking about possibly doing a skin graft to cover it up.  Timing for this will depend on if they need to do anything with her gall bladder, as they would like to do both procedures at the the same time if both are required.  So Friday's session with the general surgeon will help clarify if there is a need for any abdominal work.

This week, Shirley has had to fend a little more for herself as I have been out of town on business. Her brother provided transportation to and from the doctor on Monday and one way on Tuesday.  As Shirley cannot drive for several more months, she took a cab home for that appointment.  She said the driver was most helpful in getting her back into the house.

Today, Pete took her out for lunch--her first trip to a restaurant in over three months. The photo was taken during their meal out.

I'll plan to post again on Friday or Saturday after her next appointment.

Packing up and saying good bye

Tomorrow is the exciting day of getting released from the hospital. Today is the sad day to saying goodbye to the many members of the medical staff whom have taken care of Shirley over the last two months and have become our friends.  Although she has only been on the Rehab Unit for two weeks, the nursing staff here have more time to interact with patients and some very close bounds have been developed.  Below is a photo with Anisa, one of her favorite RNs on the floor. 

Today, Shirley got a pass to leave the hospital grounds.  We went over to Pete and Caroline's house to drop off some of her stuff and select some clothes for tomorrow's departure.  We had a nice, but brief visit and some refreshments on their front porch overlooking Lake Washington.

Tonight, Anisa taught me how to pack the wound on Shirley's sternum.  She observed me doing it once and pronounced me ready to take care of this at home. She packed a bag of supplies for me and I'm all set.

We also took delivery of a home-sized version of the wound vac that is about half the weight of the hospital version.  Tomorrow before we leave, they'll switch us over to it.

We also reached another blog milestone, with going over 20,000 page hits today.  We now have readers in 27 countries spanning all six populated continents!

Getting Ready to Go

We had a very pleasant surprise on two fronts today.  Dr. Chavez, the Resident from the Rehab Unit mentioned that she had been consulting with "Dr. Ryan" from General Surgery about the drain tube in Shirley's gall bladder. He was going to be stopping by for a consult later in the morning.  Shortly after that, a familiar face dropped by--Ryan being the original Resident from the Thoracic Team that had worked with Shirley back in March.  He had rotated on to General Surgery and was now going to be looking after Shirley again for another body part.

The second piece of good new was that he told us that the study they had done next week showed no abnormalities with her gall bladder and that it would not need to be removed.  Further, he capped off the drain and removed the "bile bag" that Shirley has had to tow around for the past two months.  The drain tube is still in but if she doesn't show any issues by next Wednesday, they'll remove the tube!  

On the flip side, we were informed today that when we go "home" there is an expectation that Shirley or I will be responsible for doing the dressing change on a hole in her chest that is no longer under the wound vac (the vac is still over a portion of her incision, but this is a hole they needed to make to remove an infected portion of her sternum.  I'm not sure why this surprised us both so much--I did the dressing changes the first time she went home--but this caught us both off guard.  Perhaps this is a hole that needs to be "packed" with saline-saturated strips of gauze.  I've watched/assisted the nurse change it each time since they switched to this type of dressing.  After thinking about it, I know I can do it, it requires a fair bit of coordination but I'll give it a shot. However, I have a business trip the second week she is home and we'll have to make other arrangements. Based upon the position of the hole, it's really impractical to self-change.

May 8 is the Date

So the doctors reviewed Shirley's case today and observed the conditions of her wound during dressing change today.  They came to the conclusion that May 8 would be a good date to set for her discharge.  That will be the 60th day since her admittance for the infection and her 79th overall day in the hospital.

The date is far enough away for Shirley to process and plan for.  When it was suggested two days ago that she might be released today, I think that was too soon in many respects. Now we have time to plan how things will be in our interim situation at her brother's house.

Today we met with the Social Worker for the Rehab Unit.  She will make the arrangements for home health providers to come to the house for dressing changes for her wounds. We also learned that today is the last day for her IV antibiotics which means they will likely remove her PICC line before her release. 

Shirley continues to get stronger with her rehab.  She is climbing a couple flights of stairs; spends an hour a day in an exercise class doing resistance work with bands; and is up to 15 minutes of continuous motion on a machine that works both her legs and arms.

It's a beautiful day in Seattle and the weekend forecast is for sunny skies and temperatures near 80 degrees. I hope to get Shirley outside to enjoy some sunshine and fresh air in some of the gardens on the hospital grounds.

Not Tomorrow

Well today we learned that Shirley will not be released from the hospital.  While she had progressed sufficiently, the Thoracic team does not want to weigh in a timeline until they inspect her wound during tomorrow's wound vac change.  Shirley is a relieved as this gives her more time to process this change.

We've begun meeting with the teams that will support her after discharge.  Today, a pharmacist from the Home Infusion team stopped by.  The plan is to leave her PICC line in so that she can self-administer the IV antibiotics that she is still taking three times per day.

I'll provide another update tomorrow after we talk to the surgeons.

A Discharge Date?

Today was the one-week anniversary of Shirley's admission to the Rehab Unit and our first meeting with "the team" to review her progress.  To say the least, Shirley has hit it out of the ballpark and exceeded the expectations of the entire Therapy team.  Originally, they had projected a 2-week stay with release on May 8.  Today they asked her how she would feel about being discharged on Friday.

From a rehab perspective, I'm confident that she will be ready. She has been released to get up and move around without assistance; she is able to climb a flight of stairs (with some resting); and is able to stand for a full hour during her OT session.  Today, we worked on getting in and out of the car and her little SUV is nearly perfect in terms of height and ease of access.

The challenge is going to be from a medical standpoint and whether the surgical team feels her wounds are sufficiently healed.  She still has the wound vac and the change of dressing on Tuesday revealed limited progress in terms of additional closure from the Friday dressing change.  She is still on IV antibiotics (3 times daily) and they will likely continue that until her wound is completely closed.

It is a time of both excitement and a little trepidation, as she certainly doesn't want to leave for a few days only to have to come back again due to some sort of set-back.

So  for now we wait.  The Rehab doctors will talk with the Transplant doctors and make a decision on when it is safe to release her.