Trees, planes, and little boys

In a recent discourse, President Dieter F. Uctdorf, a member of the First Presidency of the Church of Jesus Christ of Latter Day Saints, shared the following analogy.

“It’s remarkable how much we can learn about life by studying nature. For example, scientists can look at the rings of trees and make educated guesses about climate and growing conditions hundreds and even thousands of years ago. One of the things we learn from studying the growth of trees is that during seasons when conditions are ideal, trees grow at a normal rate. However, during seasons when growing conditions are not ideal, trees slow down their growth and devote their energy to the basic elements necessary for survival.

“At this point some of you may be thinking, ‘That’s all very fine and good, but what does it have to do with flying an airplane?’ Well, let me tell you.

“Have you ever been in an airplane and experienced turbulence? The most common cause of turbulence is a sudden change in air movement causing the aircraft to pitch, yaw, and roll. . .

“What do you suppose pilots do when they encounter turbulence? A student pilot may think that increasing speed is a good strategy because it will get them through the turbulence faster. But that may be the wrong thing to do. Professional pilots understand that there is an optimum turbulence penetration speed that will minimize the negative effects of turbulence. And most of the time that would mean to reduce your speed. The same principle applies also to speed bumps on a road.

“Therefore, it is good advice to slow down a little, steady the course, and focus on the essentials when experiencing adverse conditions.”

I heard different piano sounds than I'm used to and came in to find Patrick driving his truck on the piano keys.
I heard different piano sounds than I’m used to and came in to find Patrick driving his truck on the piano keys.

Now, mind you, we haven’t been exposed to any extremely adverse conditions, but after months of smooth flying, quick growing, and otherwise unexpected good health for Patrick, we’ve recently needed to slow down, and make some adjustments.

As I’ve mentioned before, for the past several months, Patrick’s stomach has been very upset. When we drain his stomach, we’ve been getting ever increasing amounts out. When we don’t drain his stomach, he throws up. At first we thought it was bacteria causing the problems and tried changing the oral antibiotics we gave him. We’d see short periods of improvement, but the problem always came back, and kept getting worse.

And then, right before Christmas, Patrick’s dietician called to tell me that his labs were showing signs of problems with his liver. This didn’t surprise us much. His eyes were looking yellow for the first time in a long time. But it wasn’t good news.

Then, if that wasn’t enough, Patrick got a cold. First he developed a fever in the middle of a horrific snowstorm. (Bad enough that, when the fever seemed to be going down, not up, we opted to wait out the storm rather than go up to the hospital. The fever went away by morning.) Then, as with any bug, his gut got worse. He started waking up sick during the night. And, because he was sick, we cancelled all our appointments and spent another week home, just the two of us for most of the day.

Meanwhile, Patrick’s labs were still showing elevated liver enzymes and bilirubin, meaning his liver was sick. His dietician and doctor decided to take the lipids (fats) out of Patrick’s TPN (IV feeding.) This is a pretty drastic step. The lipids are the part of the TPN that hurts the liver. Taking them away lets the liver rest and heal. However, it also takes away Patrick’s best source of calories – slowing down his growth. (That’s ok. He’s a bit of a chunk right now, anyway). It also can’t be done long term. Eventually, he’ll develop fatty acid deficiencies.

The good news is that, for now, his liver is responding to the treatment and his eyes are white again, scary lab numbers back down closer to normal.

Still, Patrick was draining over a liter of bile from his belly every day. If this is the result of an infection, that kind of long term illness could be hurting the liver. And whatever the cause, that represents a large amount of fluid and bile salts that the liver is putting out, but not receiving back from the colon. The liver likes that mission complete signal of getting its bile salts back again… so the incomplete process could be doing damage.

Finally, we had one sick night too many and I decided to call in help. So, just after the start of the New Year, I sent an e-mail to Patrick’s doctor.

Then – bored and stir crazy – Patrick discovered undressing himself. Yup. For a whole day, he tried taking off his clothes. By evening, when he could’t get his shirt off, he decided to take his dressings off instead. I was doing dishes and turned around just on time to see him snap his central line in half.

We ran up to the hospital and got the line repaired. It was quick, but we didn’t get home till 10. The glue had to set till 1:30 a.m., so I took a short nighttime nap, then got up to start the TPN.

But the line didn’t flush the way it should and by morning, the repair had sprung a leak.

So back to the hospital we went again. The repair proved difficult this time, taking over an hour of work and two repair kits to complete. (Amazingly, Patrick layed still, watching his favorite iphone app for all that time.)

By then, I was sick (I had the cold too) and exhausted from lack of sleep. So I decided that I wasn’t leaving the hospital till everything was taken care of. I went to the pharmacy and raised a stink about a prescription that I needed to fill but that was hung up by a change in our insurance that happened at the beginning of the new year.

Then I went upstairs and told Patrick’s GI nurse all of what was in the e-mail to his doctor and how worried I was about the high output, his liver, bacterial overgrowth, and all the rest.

Then I went home and got what sleep I could manage.

Patrick resting in his chair, listening to Grandma on the phone, and eating a candy cane while I scrambled to make up for not turning Patrick's TPN on overnight. This is what happens when I tried NOT to slow down to allow for Patrick's new needs. Amazingly, even though his hydration and blood sugar were frighteningly low when I caught the mistake, he was ok again by the end of the day.
Patrick resting in his chair, listening to Grandma on the phone, and eating a candy cane while I scrambled to make up for not turning Patrick’s TPN on overnight. This is what happens when I tried NOT to slow down to allow for Patrick’s new needs. Amazingly, even though his hydration and blood sugar were frighteningly low when I caught the mistake, he was ok again by the end of the day.

 

The next night Patrick’s doctor called me. He said that he thought that maybe Patrick’s stomach upset was being caused by poor motility, not bacteria. So we stopped playing with oral antibiotics. Instead, Patrick’s doctor restarted an IV antibiotic called erythromycin that helps to stimulate motility.

We now run this medicine by IV right before breakfast and right before dinner in the hopes that it will help the food get to where it needs to be. I worried because the IV tubing on the syringe pump we use for meds is so short. But Patrick doesn’t mind it. He actually quite likes carrying this pump around over his shoulder.

At first, Patrick’s motility really picked up. The results seemed immediate. Yes, I still get excited when my child poops, so lots of really full dirty diapers was good news for me.

But after Patrick threw up either at or right before dinner 3 days in a row, I realized that this was going to take some fine tuning.

Still, the medicine seems to be helping. Patrick’s total fluid losses are holding steady at just over a liter a day, but some of that is passing all the way through his gut – which means that he’s being given his best chance to absorb all he can.

So, we keep plugging away.. slow and steady. And overall, things seems to be better. Patrick’s appetite is improving. His liver is staying healthy. And output even seems to be starting to go down a bit.

We hope this is just a little bit of turbulence. We’ll keep working with Patrick’s doctors here and in Seattle. (It’s time for a checkup there anyway.) And we’ll keep hoping that this will be some momentary discomfort for him and not the beginnings of things going downhill the way that, by all rights, they should be doing. After all, he has less gut than any other child I have met EVER. That is bound to cause problems and get worse until something changes. Kids waiting for a transplant don’t usually get healthier with time.

So we’ll do what trees and pilots do and slow things down a bit, focus on the essentials. But we’ll do what little boys do, too: grow and play and learn new things.

One thing – between the holidays, family events, and illness – most of our friends and therapist haven’t seen much of us this month. And if you see Patrick right now, after about a month with little contact, you’ll be blown away by how much better he’s walking, how much more he’s talking.. and how cute he is with the new sign language that he’s picked up in the last few weeks.

2010 Year in Review

A friend of mine has a tradition of a year in review blog. It seemed like a great way to take account of your life once a year, looking forward to things to come.. So, I’ve decided to adopt the tradition myself. Here goes.

January 2010. After several weeks of elevated temps and no appetite, finally requested blood cultures for Patrick. Found that he had a line infection from a rare bacteria called bacillis cereus. Treated the infection with antibiotics then returned home.

A week later, with Brian out of town on business, Patrick came down with RSV. Amazingly, he only spent 1 night in the hospital for this, though he had several visits to Primary Children’s respiratory clinic.

Published my first Short Gut Newsletter.

February 2010

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Attended Paul Cardall’s “Celebration of Life” concert on Valentine’s day, his first performance after receiving his heart transplant and had a good, uplifting cry. Took notes, as he’d promised to perform at a concert we were planning ourselves in the spring.

Bacillis returned. We actually only found it because we’d decided to have follow-up cultures drawn. The line needed to be pulled this time and I threw a little tantrum to get the line pulled and a temporary line put in all in the same day. I don’t think surgery often has parents refuse to sign consent. Changed oral antibiotics, started a long course of IV antibiotics. Returned home with what we thought was a fool-proof treatment plan.

March 2010. All the antibiotics made Patrick grow yeast. Patrick was horribly sick and I was scared to death! But amazingly, with the line out, they were able to kill it. Patrick had to spend a miserable few days with IV’s in hands and feet, so we got Child Life on board, which made it tolerable. In checking for yeast, the radiologist – who never talked to me about Patrick’s history – “discovered” Patrick’s existing partial bowel obstruction. Some very green residents got very scared and tried to take drastic measures. Finally, we talked to Patrick’s surgeon, confirmed that it was the same problem we already knew about and decided not to take any action. After a few days wasted treating an old problem like a new one, we got to go home.

The same surgeon miraculously got a double lumen broviac line into Patrick’s tiny veins and we were able to start using ethanol locks to keep infections out of the line.

April 2010. Really got serious about planning Patrick’s Hope Concert. Pushed the date back to the end of March to allow more time to plan. Found a venue. Bought insurance. Started going door to door to local businesses looking for donations for the concert and the silent auction.

Donations started pouring in from all over and we were overwhelmed.

Took Patrick for a checkup in Seattle.. all by myself for the very first time. This was also the first checkup we went to without an admission in Seattle. Got a flat tire on the way home and returned to a house with the water shut off due to plumbing problems.  However, we were at home.. for a whole month.. The first in so many that we didn’t mind.

Signed up an occupational therapist. That makes 5 therapists and 10 visits a month.

May 2010. Patrick’s yeast grew back, again! He got so sick that his platelets dropped. This was another scary admission with low blood counts, transfusion, fluid overload bad enough to require oxygen, an accidental extubation in surgery, and a post-op fever.

We were there long enough to do the first of 3 TV news interviews while in the hospital and the 2nd on our way home, the day of Patrick’s discharge. Patrick was famous. Donations and offers of help came pouring in.

Patrick’s Hope Concert was a huge success! Attendance was lower than we’d hoped. Turned out that when we changed days, we picked a really bad one.. but still, hundreds of people came and the event raised enough money to have been worth the effort. Our families and friends came together in amazing ways to put together a spectacular evening. Every auction item sold. Brian got to work with the sound crew and performers backstage. Patrick got to go through a whole day without a nap and stay up well past his bedtime. We were deeply touched, extremely entertained, and thoroughly exhausted.

June 2010. In June, we rested.

July 2010. Took Patrick on his first vacation, despite 3 line breaks in 3 days, including one in the middle of Idaho. I did a line repair myself because none of the ER staff knew how. Patrick did pretty well with his first road trip.

We flew to Seattle for another checkup, this time taking Brian so we could have even more vacation fun. We celebrated the one-year anniversary of Patrick’s cardiac arrest by wowing his transplant team with an almost overweight and overwhelmingly healthy child. Then we had pizza at a park on the beach with friends, then took a walk in the sand which made Patrick so happy he cheered out loud.

August 2010. Patrick got a cold and pinkeye and an ear infection. Blood cultures said he also had a very serious line infection. We aren’t sure we believe it. The short hospital stay resulted in a clotted line we ended up trying to unclot on the night of Brian’s 30th birthday. This line eventually had to be pulled, and a new one was placed in outpatient surgery.

Got a zoo pass that I was very grateful for.

Published my 2nd newsletter. Moved the support group onto Facebook and all of a sudden had a lot of new friends.

September 2010. Got Patrick a brace to help with muscle tone issues in his foot. He finally started trying to walk. Got the go-ahead to start trying feeding therapy.

October 2010. Had a follow-up visit with Patrick’s rehabilitation doctor who confirmed that Patrick has abnormal muscle tone on his right side, probably a manifestation of some small brain damage done by his cardiac arrest, but said that we were doing all the right things. Changed speech therapists to one who could also do feeding therapy. She seemed tough, but better at diagnosing causes for Patrick’s speech delays.

Also saw an allergist and confirmed that Patrick has a lot of food allergies.

Patrick learned to walk by his 2nd birthday.

We wondered how we had such a healthy child at age 2. Everyone told us he’d be on death’s door if not gone by then.

November 2010. Patrick started walking everywhere. I turned 31. Quit feeding therapy because Patrick started to have uncontrolled bacterial overgrowth and adding new foods was only making things worse. Kept the same speech therapist, as we actually started to make some real progress.

December 2010. After months of uncertainty, it became clear that impending changes at Brian’s work were really going to happen. Although the job was stable, certain aspects were unclear or destined to change in ways that would mean big changes in Patrick’s medical care. Decided he’d take a job offer in a sister company to keep our current benefits package and more stability. Had to keep this secret for most of the month. He’ll start transitioning into this new job in January.

Patrick’s stomach upset only got worse. Tried a bunch of different antibiotics. His eyes started to look a bit yellow. Labs confirm problems with his liver, so we stopped giving lipids in the hopes things will turn around. My instinct says the two problems are related.

Still, had a very sentimental holiday season with a healthier-than-he-should-ever-be little boy. Enjoyed every minute of the magic of Patrick’s 3rd Christmas.

By January 1, 2012: I will know why Patrick’s gut has been so sick lately, and hopefully have found a solution. I will have enjoyed my time my little boy and with my husband – wasting much less of it with anxiety. I will have stopped saying “someday I’ll exercise again.” I’ll have found some way to be active. I will enjoy my callings not only while I am doing them, but while I am planning to do them as well. I will stop trying to control everything. I will ask for help and trust my helpers more. I will continue to entrust my future to my Heavenly Father.

2010 was an eventful year. We were blessed to spend so much of it at home, doing the things that healthy families do. 2011 will almost certainly bring big things. Change is almost inevitable in our house. I hope to be up to the challenge.

Concert announcement

I hinted at this a month ago. Some amazing things have come together.

We are excited to announce that a benefit concert in Patrick’s behalf has been scheduled for May 22, 2010.

The list of performers is really exciting. They’ll include: Paul Cardall – pianist and transplant recipient, Sam Payne – singer and guitarist, Mindy Gledhill – singer,  Steven Sharp Nelson – cellist, and Charley Jenkins – country singer, guitarist. I’ve heard all of these performers in concert before and it should be a spectacular show!

The concert is scheduled for 7:00 p.m. on Saturday, May 22 at Eisenhower Jr. High, which seats only about 1000 people. This smaller venue should give the concert a bit more of an intimate feel.

A silent auction will be held starting at 6:00 p.m. It will close at intermission. Donations so far include tickets to sporting events, plays and concerts; gift certificates for river runs, ski lift passes, hotel stays, spa treatments and more; various gifts and gift baskets from local businesses; signed artist prints; beautiful handmade gifts; and much, much more. We are actually still looking for good silent auction ideas. If you’d like to contribute or have a lead you think would be worth following, let me know.

Planning this event has been a once-in-a-lifetime experience! It’s been a humbling experience to see the outreach of generosity and kindness from the community.

I’m sure it will be an evening never to be forgotten.

Tickets are on sale here. Be aware that, since our venue is small, they might sell out fast.

Patrick’s anatomy

For some of our more curious readers, here is an image that can hopefully help you visualize what all the hoopla of “bowel obstruction” is about. The connection point between large and small intestine isn’t very visible because it’s so narrow, but the results of this narrowing is apparent in how much the small intestine has been stretched out as a result of the pressure. Kinda reminds me of those cartoons where there’s a kink in a garden hose that fills and fills until it looks like a big balloon.

In other news, we should find out in the morning whether or not we can go home tomorrow. The docs are a bit worried about making sure that we have a plan to feed Patrick without causing him to loose too many fluids so it’s hard to keep him hydrated. So we’ll see how he does for the night and they’ll make a decision in the morning.

We need silent auction items

There are SO MANY exciting things coming up this spring for Patrick! The outpouring of generosity from friends, family, and complete strangers is astounding! I don’t want to spoil the fun by telling you all of what lies ahead, but there is one event that we can use your help with.

On May 1st, we’ll be having a benefit concert and silent auction. We’re pretty darn excited about the performer’s who’s coming. (Just for fun, all I’ll tell you now is that he’s a well-known local musician). We’ve already had some items donated to be auctioned including artwork, event tickets, and some amazing handmade items. We need your help finding enough to make this a great auction.

A silent auction is only limited by the imagination. Here are a few ideas:

1) Hotel stays, rental cabins or condos, restaurant gift certificates and other vacation or “night out” items.

2) Food gift baskets from bakeries, gourmet groceries, etc.

3) Personal services like hair styling, massage, manicures

4) Handmade items

5) Tickets to sporting events, plays, etc. (Know anyone who’s not using all of their season tickets this year?)

6) Household services such as carpet cleaning, gardening, car care

7) Recreation: Admission to theme parks, museums, golf course greens fees, ski lift passes, etc. Movie passes.

8) Themed gift baskets (For example, a basket of scrapbooking supplies, a collection of sporting goods, a basket of baby items, a collection of music or books, a basket of gardening supplies, etc.) Do you or someone you know sell or work for someone who sells items that they might want to donate?

9) Bigger individual items such as tools, fishing poles, golf clubs, etc.

10) Sports memorabilia (We’re requesting from local teams, but do you have any personal connections?), autographed books or music, etc.

This is just a handful of ideas. Really, the sky’s the limit.

Remember that all donations are tax-deductible. And, if needed, we can provide evidence of our 501(c)(3) status, donation-in-kind receipts, and anything else along those lines.

We need all donations by April 16th to give us time to get them ready for the auction. We’re also looking for volunteers to staff the auction and concert.

We’ll be sending more details about the event and how to buy tickets soon.

Thanks again for all that all of you do for our family!

Worth the wait

Last week was one of the harder hospital stays we’ve had, and I think it’s because there was so much waiting for answers to scary questions… and while we waiting Patrick didn’t feel all that sick and couldn’t figure out why his boundaries were suddenly so much smaller. Had he not discovered opening and closing cabinet doors as a way to spend his time, I think I’d have been a goner.

After 3 days, the lab tests showed that the infection was, in fact, the same infection Patrick had back in January. This type of bacteria can sometimes live in the plastic of a central line. The doctors theorize that the reason Patrick only sometimes had low fevers and only sometimes acted sick was that the infection was living in the line and only sometimes making its way into his bloodstream.

The best way to make sure Patrick got better was to take out his central line. So – Thursday afternoon they took Patrick to do an ultrasound of his veins to see where a new line could be placed. Friday morning they explained a plan to me that involved removing his broviac line and putting in a temporary PICC line instead. (Please see previous blogs for descriptions of the differences between these lines). After 3 days, they’d take out the PICC line and put in a new broviac line instead.

I explained again that we’d been told that Patrick couldn’t have PICC lines because of the collateral vessels in his shoulders. But – it was better to try than to plan for peripheral IV’s in his hands and feet for 3 days.. So we went ahead.

Both the broviac removal and the PICC placement are sedated procedures and it took some talking to convince them that they could be done at the same time – but, despite a full-to-overflowing hospital, they made it happen.

We got ready by putting an IV in his hand where contrast could be injected and an NG tube down his nose to drain his stomach and make sure he didn’t vomit and aspirate again. This took over an hour to do. Patrick has learned to block tubes with his tongue as they try to pass them down his throat. It took several tries and a very crafty charge nurse to finally get it all done. With music therapy there to try to help calm him down, the room seemed a bit like chaos. In the end, Patrick was exhausted and furious. I took this picture as I tried to calm him down right before he fell asleep from total exhaustion.

Late afternoon on Friday, they took Patrick to Special Procedures where they use a technique called fluoroscope to view the blood vessels to view the blood vessels as they work.

The anesthesiologist gave Patrick a dose of Versed and let me hold him as it put him to sleep. This was a first for me, and interesting to see his reaction. First he got all giggly. They he took my face in both hands and gave me a big sloppy kiss on the mouth. They he went kind of limp and I put him on the procedure table and left as he was drifting off to sleep.

Less than an hour later, they called. They explained that he did indeed have collateral vessels that made a PICC line impossible. However, they’d put in a deep peripheral IV that would better survive the 3 day wait.

Picking Patrick up, I learned that Versed does two things to Patrick. It makes him loud, and it makes him fearless. He spent the entire ride to his room and then at least an hour afterwards yelling “Hi!” at the top of his lungs to every person who passed by.. including the ones all the way out in the hall where they couldn’t see him. He also took to jumping and climbing and bonking his head into things. (He still has a bruise between his eyes from this game).

Soon he got tired and went to sleep. And we went back to waiting. Surgery requires a 3 day wait before they can put in a new broviac line whenever one is pulled for infection. In the meantime, the sugar in Patrick’s TPN had to be reduced to prevent damage to the peripheral vein. This meant he didn’t feel quite as well. He also kept the IV in his hand because we don’t dare take out any working IV, for fear we won’t get one later when he needs it.

Patrick didn’t want to slow down, though. Within a day he’d figured out how to still crawl with a splint on his hand.. he was determined to stand at the side of his crib.. and he taught himself to sit up to make sure that no one else would be able to get away with trapping him by laying him down. It was an exhausting 3 days because he was extra motivated to stay active, despite his new restraints.

Finally, Monday rolled around and Patrick was eligible for surgery again. We waited all day, and finally Patrick’s doctor told the nurse to call and see what was taking so long. We found that his name had been accidentally left off the schedule. They added him at 4 and around 6:30 took him down to surgery.

While we waited for the anesthesiologist to come, Patrick was his usual bundle of energy. He discovered a pretty big blue button on the wall that he pushed. He was thrilled by the alarm that sounded and how quickly people made it to the room. Yes, he found and pushed the “Code Blue” button that is used to call emergency help when a patient stops breathing or worse. I caught on and cancelled the alarm as the anesthesiologist got to the room. He only got to the button once more as we talked, which just got a big grin from the doctor.

The pre-surgery talk with this doctor scared me. He explained that there were big risks in intubating when Patrick had RSV. He also explained that the surgery might take a long time, as they didn’t know for sure how hard it would be to get a line.

Again, they gave Patrick a dose of Versed and I kissed him as he drifted off then went to the waiting room – a nervous wreck. Howie joined me about 15 minutes later, and after another 15 minutes the surgeon appeared and explained that they’d easily gotten a line in.

When I got to the recovery room, Patrick was trying his best to sit up while everyone else tried to keep him laying down. An hour later, though, in the room, he was up and full of energy. Again, he was fearless. His nurse kept calling him “wild” as he would quickly try to escape guarding hands to stand and jump, etc. Fortunately, by 10 he wore himself out completely and other than being woken by vitals, slept through the night.

Tuesday morning, we were finally able to go home. We arrived home almost exactly 7 days after we were admitted to the hospital.

When you’re confined in a little hospital room, you don’t necessarily notice all the learning your child has done. Patrick is now able to sit himself up and just needs a little more practice to master crawling on hands and knees. He’s playing peek-a-boo and other interactive games. He is a HANDFUL and it seems as though it came overnight.

He was so happy to be home with space, though, and so was I! It’s so much easier to contain a tornado if it has a little bit of space to bounce around in. We’ve had to adapt some, though, to adjust to his new skills. It’s no longer safe to use the changing table.

Patrick did manage to break his line his first morning home, so we spent yesterday morning up at the hospital getting it repaired. (Big thanks are owed to the GI staff who managed this in their clinic and saved us a trip to a very overworked ER). Between that adventure and his daily appointments this week, I was quickly reminded that, even at home, keeping up with Patrick and his needs is plenty of work.

We did see his pediatrician yesterday and she was all grins as she handed me a growth chart that showed Patrick’s weight in the 5th percentile! He’s always been well under the lines on the growth chart. We’ve never even talked percentiles.

I don’t know how we’ve been so blessed that, even with infections, he’s been really very healthy for so long. But we are grateful as we take each day at a time. Some days are harder than others, but at least this week, the outcome is worth the wait.

Re-evaluation at Seattle Children’s

Sick boy on beanbag

You may have heard that Patrick had a day of office visits scheduled at Seattle Children’s hospital last week. After his cardiac arrest and the many complications that followed, they wanted to see him again to see if anything had changed that would affect his transplant status. They also wanted to look to see if he needed to be listed for a liver transplant.

Daddy & Patrick in the ERWhat you may not have heard is that Patrick was hospitalized Sunday night with another infection. This time it was a staph infection which, if caught early, can be treated through his central line and clear easily or, if more established or more resistent, could become a very persistent infection that can hang on for months.

I called Seattle Children’s and tried to reschedule our appointment. However, Dr. Horslen was going to be away for the next several weeks and they didn’t want him to stay inactive on the transplant list for that long. After a few days and some discussion, we made the decision on Tuesday to have Patrick admitted at Seattle Children’s so they could both treat the infection and do the evaluation.

We got the final go ahead late in the day Tuesday. I was up till 1 a.m. packing.  Wednesday he was discharged from Primary Children’s with just time to go directly to the airport. The flight went well. They only real difficulty was that Patrick’s ostomy bag started leaking at takeoff. Well, and that I got a tad bit lost in the airport because we landed in the international terminal and airports aren’t as well marked when you have to take the back elevator routes.

Nevertheless, we arrived at Seattle Children’s around 6 p.m. – just as they were changing shifts. We met part of the medical team that would be following him and, as usual, wowed them by giving them in writing all the information they really would need. It took some time to get orders written, so we had another late night as labwork and meds came trickling in. It was about 2 a.m. before we made it to bed again.

Smiley in SeattleThe nice thing about being inpatient is that it gave me a sense of what things will be like during his recovery after transplant. We started with an early abdominal ultrasound, specifically a doppler. Yes, this looks a bit like the weather map images, only it shows the flow of blood through the veins. They were looking to see if portal hypertension was developing. (As the liver scars, it starts to send blood through other vessels creating extra blood pressure through them. It can cause lots of complications.)

The team rounded about 10 a.m. It was a big group, about 15 people, including his GI Dr. Horslen, his transplant coordinator, nutritionist, and others who specifically follow him. They had looked at the ultrasound and the labs from the night before and at his labwork. Both looked as good or better than they had in April.

Dr. Horslen came back later in the day to talk to me and said he was very glad we’d come. He’d imagined he’d find Patrick in much worse shape after the reports he’d been getting. He did a physical examination, too, and then said that he didn’t think Patrick’s liver was really in bad shape yet. He said that the problems with his spleen were probably mostly due to the many months of infection that Patrick has been through, meaning that hopefully when he’s healthy, his spleen will improve, too.

We discussed other goals, too… including taking down Patrick’s ostomy and replacing his PICC line with a broviac line when he could have surgery. We’ve been going the rounds on the question on whether or not Patrick should have his g-tube removed, too, before portal hypertension makes it bleed and be more difficult to close. However, Dr. Horslen said he was under the impression it was unused when he recommended that, and that if we were using it, he’d be ok with us leaving it in.

It was great to talk to him and to watch him play with Patrick. Not only is he brilliant, but he has a wonderful bedside manner. It made me happy to remember that there was at least one big reason why we chose Seattle Children’s for transplant.

We also had visits that day from the nutritionist and a care coordinator. And then in the afternoon we got to have a little bit of lazy time. Child Life brought Patrick some bubbles and it was fun to watch him experience those for the first time.

When the nurse came on the night shift and Patrick was playing with her while she took vitals she frowned and said “Do you really have to go home tomorrow?” I was surprised because I’d expected to need to be there at least through the weekend… But before midnight they had me making lists of what would be needed for me to be able to go home on the 5 p.m. flight the next day.

Rounds in the morning confirmed that they felt Patrick could go… assuming that we made sure he got a visit from Dr. Reyes, his surgeon.

The rest of the morning I packed and kind of waited for word that we were really going. A volunteer came to play with Patrick so I’d have hands free. About noon, I still hadn’t heard one way or another, so my nurse started making calls for me. I looked at flights and now there was only 1 left and the price had doubled. But – the insurance company agreed they’d rather pay for extra airfare than another night in the hospital – and so I started working on booking a flight home.

Dr. Reyes came in about 1. We talked again about the importance of taking down Patrick’s ostomy. He told me a bit about starting intestinal transplants in Pittsburgh 15 years ago. (He was on the team that did the first ones.) And he explained how they’d learned that the surgery wasn’t really effective without a strong GI team behind it to make sure the patients stayed healthy. He also explained that one thing they’d learned in that time is that survival rates are better without an ostomy.

I ran our other surgical plans past him (liver biopsy, broviac line, and possibly g-tube.) He looked at me and said, “Leave the g-tube in. He’ll need in later.”  So I guess that settles that.

He left and I immediately went back to booking a flight. Meanwhile, the care coordinator came and brought me a cab voucher. My nurse got Patrick ready and booked the cab while I got the ticket. And I literally hung up the phone, put away a few things, and walked out the door.

Flying HomeThe flight home went smoothly. Howie was there to meet us. We had some adventures waiting on the way home including a flat tire, a broken jack, and eventually a tow home. But at last, we are home.

They discussed Patrick’s transplant status in their meeting yesterday. They were ready to move him back to status 1 for a small bowel. They will not yet list him for a liver. When they checked his labs, though, they found a blood culture positive for infection… so the doctors are discussing what to do now. He’s not sick and it could have been a contaminated sample. But they have to work that out before Patrick’s listing is made active again. Time will tell.

We’re parents!

We have some exciting news! We have been chosen to adopt a special needs child in Michigan. He’s a beautiful little boy. 5.5 lbs. He has a condition called “short gut” and needs a bowel transplant in order to survive. Until he can get to that transplant (between ages 1 &2)… and even after… his chances of survival are only 50/50.

We’re a very proud mom and dad. We’re also a bit overwhelmed by the sheer weight of the burden of his medical needs and a very complicated adoption process here. We appreciate all of you who’ve been offering prayers on our behalf.