Physical Therapy

With the incision healing properly and the infection under control, focus now turns to building strength so Shirley can bust out of this joint.  She is working daily with Physical Therapy and for the last four days has doubled each previous days' distance walking.

The therapist suggested today that on Sunday we take a field trip to the Rehab unit where they will eventually transfer her. But before moving there she will need to demonstrate that she can handle a minimum of three hours per day of PT and OT.

Today Shirley made what I think is her sixth trip to the OR to change out the wound vac dressings. The surgeon said that at least once more will be done in the OR and then they hope to be able to do it bedside.

I've also been remiss in mentioning that yesterday they removed one of her chest tubes.  She has also been totally off supplemental oxygen, so her tube count has dropped from ten down to seven.  And while she still has her feeding tube in, they are only running it at night as a supplement and are encouraging her to eat as much solid food as she can.

Big Steps

Shirley passed a huge milestone today by getting out of bed and walking. Other than an assisted step to get from chair to bed, this is the first time in two weeks she was on her feet--and she did it twice.  This morning, the occupational therapist came by and got her up and asked her to take a few steps with a walker.  A couple lead to a couple more, then a few more and the next thing you know, she's out in the hallway!

This afternoon, the physical therapist came by and got her walking down the hall. This time, a wheel chair was right behind her, so instead of having to gauge when she was half-way done, she was able to go until she could go no further.

Unlike immediately after the transplant, when you still have muscle tone and they get you up and out of bed right away, Shirley is dealing with several weeks of unused muscles and needs to build back up her strength and stamina.  But today was the first day in several weeks that I saw the fighting spirit that has been missing since the infection.

She was also buoyed by several visitors (brother Tom, Young, Aundie & Ryan); transplant buddy Gretchen & Walt; and our Thai 'daughter' Joy, who came up with Tom & family.  Only a few days ago, she would have asked me to turn away visitors, so this is another great sign that we seemed to have turned a corner in her recovery.

Peer Support

Over the past couple of weeks, Shirley's spirit has been down in the dumps. She's been reluctant to see visitors, open cards, take phone calls etc.  She isn't happy with the state she is in and doesn't want friends or family to see her this way.

Thinking that some encouragement from someone who had been there might do the trick, I search the internet for blogs from other lung transplant recipients.  I came across one that I found particularly inspiring from a woman named Piper who lives in New York.  I've added her blog, A Matter of Life and Breath to the links to the right. I wrote to Piper and she shared an analogy from her doctor that I found very fitting for Shirley's current situation:

My doctor once told me that going through lung transplant was a little like crossing a really long bridge during rush hour. Sometimes the traffic is heavy and slow and frustrating, and sometimes the crowd breaks and you get to move forward super fast. Sometimes you feel like you're just standing still. But at the end of the day you just have to cross the bridge, and how fast you get there doesn't determine what your drive will be like on the other side. Some people seem to have really hard starts and then go on to have absolutely amazing lives post-transplant -- long and healthy and beautiful.

I also met Pete & Carolyn's neighbor Bea, who is a Physician's Assistance in a transplant program at another hospital.  She told us that their program uses "Transplant Buddies" linking recent or potential transplant patients with post-transplant recipients who can offer moral support and help them see the potential on the other side of recovery.  I knew that UW has a support group, but hadn't heard about a similar buddy program.

After some much appreciated encouragement from Pete, I reached out to the Transplant team Social Worker today to ask if they had such a program.  She told me that they did this often and that she had the perfect person in mind for Shirley.  Talk about kismet, the person was from Portland, had Alpha-1, and as I spoke to the social worker, was on her way to the hospital for a clinic visit!  After conferring with both parties, we were introduced today to Gretchen and her husband Walt.  Gretchen had a really rough go of it-23 weeks in the hospital--but there she was, standing in Shirley's hospital room talking about getting out and walking and plans for taking a yoga class.  This was the inspiration that we needed.

Our visit was brief, as Shirley had a procedure scheduled for the OR and the gurney showed up to roll her away, but Walt and Gretchen said they would stop by again tomorrow for another visit.

Nutrition

My apologies for going several (four) days without posting an update. I have really been struggling with what to say as Shirley's progress has been positive, but at a pace that has been frustrating to me and down right depressing to Shirley.

Her lungs continue to be doing well and the signs of the infection have subsided.  They have switched her to a much more targeted antibiotic which she will be on for six to eight weeks.

Part of my reluctance to write was because of my concern that she was again not getting enough food to help her heal and rebuild her strength. But yesterday we had a long conversation with the nutritionist and my fears were put to rest.  I was under the impression that Shirley was only getting about 50% of her needed calories through her feeding tube and she was supposed to make up the other half by eating off the general diet menu.  But as I watched her order a peanut butter sandwich for breakfast and then just nibble at it all day (like for 10 - 12 hours) I thought she couldn't possibly be putting enough fuel in the tank.

The nutritionist assured me that she was getting closer to 90% of her needed calories through the feeding tube so the little she was eating was making her whole.  We also agreed that the formula being fed to her was so low in calories that it filled her up, making her not want to eat more.  After the conversation, they switched her from a 1.2 calories per cc formula to one that is 2.0 calories. They were then able to reduce the flow from 50ml/hour to 35.  This means she's getting more calories but with just over half the mass.  The theory being that she won't feel as full and will be more inclined to eat more--which will then allow them to further reduce the use of the feeding tube.

She Stands!

Shirley's physical therapy continues.  Today, she stood up and stayed on her feet for several minutes.  It may not sound like much, but this was the first time in over 10 days that she stood on her own two feet.

One more trip to the OR today to change out the wound vac dressings. They also removed the two Penrose drains that were along her sternum.

Shirley's appetite continues to improve.  Today she asked me to bring her a Granny Smith apple and a hamburger.  It's nice to see her want to eat.

A blog milestone is reached

Those of you who know me well, know I'm a stat geek.  So it was with glee that I discovered that blog service we are using keeps all kinds of metrics.  And today we topped 10,000 page views of people following along on Shirley's recovery!

The other fun thing I've been watching is what country readers are from.  The service permits me to see how many page hits there are by nation. With the far-flung Hauge family, there are a few that were no surprise (e.g. South Korea, France, Panama and of course USA). And there are the many friends we know about in Thailand  China, Japan, Iceland, Germany and Ireland.

But what has amazed me is the other places where readers have come from.  We have followers in Russia, Ukraine, Netherlands, Mexico, Australia, Canada, Sweden, Belgium, Italy... you get the picture.

If you are one of our readers from afar, I'd love it if you'd leave a comment and tell us how you found the site.  We have always encouraged the sharing of this blog and I am very interested in hearing how this story is spreading.

Cheers, and thanks to all of you for reading along.

One Down, Nine to Go

A few posts back, I commented on the number of tubes and such that were stuck into various parts of Shirley's body.  I'm happy to report that for the first time in many days, the number is on the decline, as an IV port in her neck was removed today. Now, only nine more to get rid of.

We've also experienced another hospital irony:  while virtually everyone at the hospital is encouraging her to eat more to regain her strength, today a couple of nurses from the "skin team" came in and were concerned that her feeding tube had been taped to her right cheek for many days.  Their solution:  attached the tube to a  band aid affixed to her nose. now the tube hangs right in front of her mouth.  Besides being just annoying, Shirley is still in the fog of some serious pain meds and she keeps forgetting its there with each bite or sip.

Gee, is that feeding tube in the way?

Shirley had visits today from the Physical Therapists (twice). They helped her work on her legs strengthening exercises and got her out of bed and into a chair for three and a half hours.  She also had a Speech Therapist come and evaluate her swallowing. They assume some of the discomfort she is still experiencing is from swelling and will monitor this for the next several days.

The infectious disease team came by and indicated that the infection is on the wane. They are changing her from a broad spectrum antibiotic to one more targeted to the staph strain that she did have.

Good News

Today, Shirley underwent her third trip to the operating wound to change out her Wound Vac dressing. But unlike the first two times, there was no infected tissue that needed to be removed.  In addition, her White Blood Cell count continues to go down -- not into the normal range yet, but definitely heading in the right direction.

She has also been cleared to eat solid foods. She enjoyed a cup of Jello this afternoon and a plate of Mac and Cheese has been ordered for dinner which should be arriving soon.

The Physical Therapists worked with her again today.  The gains here are small but significant, as she spent about 30 minutes in a chair.

With no more invasive procedures scheduled until Friday, she now gets two days to eat and regain her strength.

Slow Progress

Late (10:30 pm) Sunday night, Shirley was moved back out of ICU to the General Med floor 6 Southeast where she had been during the prior week.  We take this is a good sign that she is no longer deemed sick enough to require the full time attention of an RN just for herself.

But the road to recovery is long and will be slow-going.  Today, she met with a speech therapist who is making sure she can swallow correctly after getting nutrition exclusively through the feeding to for over a week.  She was also visited by physical and occupational therapists to help her re-learn out to get out of bed without using her arms as she must do for 75 days post-transplant.  She also needs to regain her strength, as today was the first day she has stood on her own two feet in almost a week.

The doctors say her lungs continue to do well.  They have cultured out a staph infection from her gall bladder, but fortunately it is a strain that responds well to antibiotics.  She will continue on another course of antibiotics for eight weeks or more to ensure that the infection that got into her sternum doesn't spread to other bones.

Tomorrow, it's back to the operating room to change her wound vac and check to make sure the incision line continues to heal correctly.

Quick update

Last night they successfully relieved the pressure on Shirley's gall bladder by inserting a small drain tube.  She has been resting comfortably today, although she is very tired.  The concerns about her health that prompted moving her back to the ICU have subsided and there are orders to move her to an intermediate care ward once a room opens up.

It's now been five days since Shirley has been able to stand up, so we're likely back to the drawing board with Physical Therapy starting in the morning.

Last night I was bored and starting playing around with the template for the blog.  I wanted to provide little thumbnails of what was posted so those not reading every day could preview older posts and click if they wished to read more.  I would appreciate your feedback on how you like the new format.

Long Overdue Thank Yous

For the last 30+ days, my life has been very focused on Shirley.  The only way I have been able to provide this focus is because of a wonderful network of family and friends whom have stepped up to take care of just about every other facet of my life.  I have been remiss in not extending a public thank you to all those have permitted us to focus on Shirley's health.

First and foremost, a huge thank you to Souang, our niece for moving back in to our house and taking care of our girls, the pets, and everything else associated with running a house. She has taken the lion's share of getting the girls to and from school.  Thanks too to her boyfriend Nic, whom I understand has done a lot of the cooking at the house for the girls.

A big thank you to Shirley's brother Pete, his wife Caroline and their daughter Frances.  They have not only provided me shelter while Shirley is in the hospital, but have literally moved out of their bedrooms so that when Shirley gets out of the hospital  she'll have a nice bright room on the upper floor of their house.  And their former master bedroom is serving as my office.

The list of people is so long I fear I will miss someone, but her it goes:

• My parents, Dale & Carla; my daughter Chloe, our co-mother-in-law Debbie and friends Bill & Sally for helping Souang getting Chenyang and Joy back and forth from school.
• Mom for coming up to Seattle for several days to sit with Shirley while I participated in a 3-day conference call for work.
• My sister Cathi for providing morale support, bringing me food and going for walks with me.
• My brother-in-law Dave for getting a loaner office chair for me.  
• All of our friends whom have come by and brought books, magazines and puzzles to help Shirley bide her time.
• All of you whom have added Shirley to your prayer chains at church.
• Shirely's siblings for words of encouragement and support.  Betsy, it was so great that your trip to the US happened at a time when you could be here right after the transplant.
• Our "daughters" Chenyang and Joy, whom have rolled with this change to their US host family. And to their parents in China and Thailand whom have provided their support and consent to this change in the host family situation
• My employer, Slalom Consulting, and my client, Nike, for permitting me to continue working remotely.  I am truly blessed to have such a great team to work with.

My apologies to those I have left off. I am sure this post will need to be updated several times.

Finally an Answer

I've written several times about Shirley's discomfort with eating.  And to this point, we've had no explanation of this--only possible causes being ruled out. Yesterday afternoon, her belly began really hurting and last night and this morning she was very nauseous and vomited several times (something they really don't like lung transplant patients to do).

More doctors have joined the party as the thoracic surgeons brought in general surgeons for consultation.  A decision was made today to do a CT scan of her gut. The scan revealed what one doctor said was the most enlarged gall blander he had ever seen. Now we have a probable cause of her discomfort. Now, what to do about it?

No one wants to subject Shirley to more surgery right now, so that plan is to call in Interventional Radiology to insert a small tube into the gall bladder to permit it to drain and release the pressure.  Oh boy, another tube--but it's better than cutting her open and doing something more invasive. The issue is urgent enough that they will be doing the procedure tonight (it's 10 pm Saturday).

Hopefully, this will resolve the issues Shirley has had with eating discomfort and permit her to start getting the nutrition needed to getting the heeling process kicked in to high gear.

The other news from today is that Shirley has been moved back into ICU.  She was needed more individualized care than was able to be provided on a general medical floor where she shared an RN with three other patients.  She now has one-on-one care again.

Fighting the Infection

Today Shirley made her third trip to the operating room. This time to change the "wound vac" (interesting article on this on Wikipedia) dressing and to debase some infected areas including the base of her sternum.  She's been in a good amount of pain tonight and the staff has been trying to balance pain control with keeping her from hallucinating -which can produce some frightening situations for some patients and they attempt to get out of bed or run and end up hurting themselves.

We (I've spent the last couple nights in the room with her) were awakened early this morning by the Resident from the transplant program to tell us that yesterday's CT scan revealed another build-up of fluid around the base of both lungs.  Apparently the small pigtail drain the inserted on Monday wasn't up to the task, so while under general anesthesia today, they put in two more full sized chest tubes (affectionately referred to by the staff as garden hoses).

When Shirley was first out of the transplant surgery and in ICU, I marveled at the number of tubes and hoses that were hooked up to help with her healing.  At first, there were eleven (four chest tubes, a Foley catheter, an epidural, oxygen, tracheal tube, arterial line, two IVs).  As these started to be removed, I commented to a nurse that it was good to see the tube count go down.  His response was "more tubes and the more doctors around is usually not a good sign".  But as Shirley's tube count goes back up, I take this as a good sign that they are aggressively working to treat the infection and to get her better.  The tube count now stands eight.

We're told the hospital stay will probably be at least another week and is likely to be on antibiotics for up to six weeks since the infection reached bone. 

Thanks to everyone for all the well wishes. I'm sorry I was not able to respond to each text and Facebook comment with a reply, but please know that my heart swelled with joy to know so many of you are thinking and praying for Shirley's speedy recovery.

One Month Anniversary

Today is Pie Day (3.14) and it's one month since Shirley had her transplant.  And I'm happy to report that Shirley is doing better following the incision clean-up yesterday.  It's been the first day in four that she hasn't had some scheduled procedure that kept her from eating or drinking from midnight to mid-evening.

Ironic isn't it. They say the reason she got in bad shape was she wasn't getting enough nutrition, yet they prevent her from eating for 75% of the day.  So today the feeding tube has been dutifully keeping a steady flow of nutrients into her and she has been able to augment that with some nutritional supplements by mouth.  It's not chewing on a hamburger, but its nice to see something going in via her mouth.

With the calories has come more energy.  A few days ago, she basically slept all day, now she is more conversant and is beginning to show signs of the Shirley we all know and love.

Infection

Warning--some of the details below may be a little graphic for some.

Yesterday I mentioned that the surgeon who checked on her yesterday was very concerned with her incision and the fact that it wasn't healing properly.  This afternoon, Shirley underwent surgery to deal with this this issue.  They had to reopen her incision and discovered that there was a deep infection that went all the way to the muscle tissue.

They cleaned out the wound, treated it with antibiotics and then dressed it with a special sponge that sits over the entire length of the incision. The entire area is then sealed with a special tape that provides an air-tight barrier.  A tube is inserted in to the sponge and hooked to a small vacuum that then pulls fluids away from the wound.

This special dressing will need to be changed each day.  Because of the size of the wound - her incision runs the entire wide of her body - and we were told that it has to be done under general anesthesia in the operating room. We were also told that Shirley is likely in the hospital for at least a week.

She is now resting in relative comfort.

Thanks for all of your continued thoughts and prayers.

Not getting better

This has been a scary last month, but I can honestly say that I'm as nervous now as I've been since the night Shirley was first taken into the OR.  We're wrapping up Day 4 of her re-admit and we really haven't resolved either of the two issues that brought us back in.

Today, Shirley had an endoscopy to see if they could figure out why she was having so much pain eating.  I didn't hear from the GI team directly, but her nurse said "everything looked normal."  Normally this would be good news but it doesn't answer why it hurts her to eat.

Yesterday, they inserted a small drain tube in her side to try and relieve some of the pressure from the excess fluid accumulating around her lungs.  It is working to some degree but she continues to have drainage issues along her incision line.

Today one of her surgeons came to inspect to check on her. He was pleased with the progress of her new lungs, but was very concerned about the fact her incision was not healing better. He was going to consult with the head surgeon but indicated that he wanted to take her back into surgery to reopen the incision and get it cleaned out.

It takes nutrition, especially protein, to help wounds heal and Shirley hasn't been eating.  And even though she now has a feeding tube, the procedures she has needed for three straight days have limited her intake to only a few hours each day.  At least tonight her nurse (a tough old former army combat medic) convinced the doctors that the 25cc per hour they ordered was not going to get the job done and got the approval to push 250cc in about 5 minutes.

Shirley has been mostly sleeping today.  When she wakes up, she's not sure what day it is or if it's night or day.

Please say a prayer for Shirley and help send good thought her way. She needs all the positive energy we can muster right now.

Back in the Hospital

Shirley's first 24 hours back in the hospital has for the most part been uneventful. Unless there is something considered an emergency, most specialty services are done Monday through Friday. And while Shirley was not in great shape by any means, they have been able to stabilize her and get things scheduled for Monday.

A feeding tube was inserted in her nose that is permitting her to take nourishment and doesn't appear to be affected by whatever issue was making it difficult for her to eat while at home. She has even had some soup and a little bit of fruit.  All good things.

Tomorrow, she will be seen by the Gastroenterology Department to investigate the gut issues.  I'm not sure what procedure will be used, but we're grateful that this issue is finally getting some attention.  She will also be seen by the Interventional Radiology department where they will insert a small tube to help drain some of the excess fluid that has accumulated in her chest cavity. This fluid is putting pressure on her lungs and has made breathing more difficult over the last few days.  They assure us this is a small tube, not like the "garden hose" chest tubes that were placed after surgery.

She is also scheduled for a follow-up visit with her surgeon, Dr. Mulligan, to review her progress and potentially have the remainder of her staples removed.

Shirley is already showing some more signs of having energy.  I am hopeful that tomorrow is a good day for putting plans in place to resolve this two lingering issues.

Setback

Yesterday I mentioned that Shirley was having problems eating.  This has begun a downward spiral as her calorie consumption is not sufficient to meet her recovery needs.  Whereas Tuesday she had enough energy to spend an hour wondering through Target, today she needs help just getting to the bathroom.  Her daily food intake is down to less than one cup of yogurt, which she uses to help swallow her pills.

I've called the on call doctor for the transplant team and she is going to be readmitted this afternoon. We're all packed and just waiting for 2 pm when they tell us a bed will be ready. This is a good thing because they will be able to provide her nourishment that will reverse the current trend.

With the pace that things get done in hospitals, I do not expect to have any more updates until late tonight.  Please keep Shirley in your thoughts and prayers and I will provide an update tomorrow.

By the way--for all of you who have been trying to call, email or text her, she just hasn't had the energy to answer her phone. We know her voicemail is full and once she has a little more pep in her step, I'll have her clear it and make room for more.  Thanks for your patience and understanding.

Greg

Adjusting to a New Routine

The last 96 hours have been a blur. Shirley came "home" to her brother and sister-in-laws house Monday night.  Since that time, we've been adjusting to a new schedule dictated by scheduled pill taking and measurements of vital signs.

Shirley hasn't had much of an appetite and suspects some kind of gastrointestinal cause. She has an appointment next Wednesday to try and figure you what is ailing her gut.  In the meantime, much of her available appetite has gone to the 25 pills she takes each morning; the 2 a lunch time, the 11 at dinner and 14 at bed time.  And these don't count the pain medication that she takes up to every three hours depending on how things are going.

Each morning, we weigh her, take her temperature, blood pressure, heart rate and she blows into a micro spirometer, which measures her lung capacity.  All these measurements (less weight) are done again each night and recorded into a log book to assure we spot any anomalies that might suggest infection or rejection.

And because the massive dose of predisone she was given pre-surgery triggers temporary (hopefully) diabetes, she is also poking her finger to do blood glucose measurements four times daily.  About half the time, her levels are just high enough that she needs a small does of insulin,  We are hopeful that as the predinsone is tapered off that this is something that will go away too.

Much like the first-time parents of a newborn, we are often uncertain if some change in vital signs or in how Shirley feels is insignificant or life threatening, so there have been several calls to the post-transplant team.  Some have ended with assurances or suggestions of increasing doses of existing drugs. Others have sent us back to the pharmacy for more pills.  Last night they suggested a chest x-ray, which in turn this morning yielded a request for a CT scan.  Now she is on diuretics to try and slow down the fluid build up within her chest cavity (which then leaks out of her incision line).

They did today pull out half the incision staples and gave her a clean bill of health in terms of the wound healing as it should.

Simple Pleasure

With the removal of the final chest tube yesterday, today Shirley was entitled to her first shower since Feb. 13.  I think she would have been happy to stay under the stream of hot water all day if Hanna, her nurse, had allowed it.  I got lessons in how to help with this process:  Shirley will not be allowed to reach behind her back or put her elbows higher than her shoulders until April 25, so she'll need help with her back and hair.

Shirley walked a full mile today without stopping and with no supplemental oxygen.  When we returned to the room, her oxygen saturation was 100%. You can't do any better that!

Tomorrow the next chapter begins as Shirley gets to go ":home" to her brother's house.

Unhooked (at last)

Mark the time:  3:40 PM, Saturday, March 2, 2013.  Shirley had her last chest tube removed and for the first time since February, 2008, she isn't attached to an oxygen tube, IV line or chest tube.  It's just her and her new lungs.  Shirley and the doctor even let me video the removal.

She will stay in the hospital until Monday and will then do some pulmonary function testing. Assuming all tests well, she will be released.

Happy day!

Jinxed

So last night, the Intern making rounds said Shirley's last chest tube would be pulled today.  The last major obstacle between Shirley and the door out of UW Medical Center.  We were excited to hear this and both Shirley and I posted Facebook messages about this exciting news.

Overnight, Shirley's drainage increased and she tipped over the maximum daily limit. Hence no tube removal today.  That will teach us to announce news too soon! So the wait will now likely continue through the weekend.

Shirley just finished walking 1.3 miles without stopping.  Up and back down the halls of 5NE.  It is interesting seeing and chatting briefly with the others on this floor--32 total rooms, all Cardio-Thorasic patients:  open heart surgeries, heart transplants, lung transplants, and several people waiting for transplants.  There are a couple of young people (like in their 20s or early 30s) on pumps that will be in the hospital until they get a transplant.

Let me pause on that thought to ask everyone reading this to please, please, please register as a donor. AND talk to your family to make sure your wishes are known.  We are so grateful to the family of Shirley's donor that they were able to see through their grief and make such a live-changing decision for Shirley and the recipients of the other organs and tissues.

Our friends Ted and Jenni sent us a link that I want to share.  They live in Vermont and Jenni received a kidney transplant several years ago. The Vermont chapter of Donate Life produced a video that really hit home for me as I watch Shirley recover and these others wait for a transplant. There is a section of the video where Jenni is shown with the woman who donated one of her kidneys.  The didn't even know each other before the transplant, which I think is amazing.

I also wanted to give a shout out to my friend Debbie, who came by to visit yesterday with her boyfriend Chris.  Chris and Deb are on my walking team and two years ago Debbie donated one of her kidneys to a co-worker.

If Debbie and Jenni's donor can endure major surgery to share a kidney, shouldn't we all be able to sign a form to say we'll donate after we are finished needing our organs and tissues?  Please consider doing this today.  Here is the link:  DonateLife.net