Transplant – Page 8 – Patrick Hoopes

Transplant Day 28 and Thanksgiving

I didn’t get to blogging last night. Patrick has had some really good moments, some really difficult moments, and a very busy treatment schedule for the past 2 days. This is the first quiet moment I’ve had. So let me catch you up.

Two nights ago, I emptied Patrick’s ostomy bag and put him to bed. (In case you don’t know, an ostomy or stoma is a place where a surgeon has made a small piece of intestine come out of the skin. It drains into a bag. Patrick needs to have one so they can easily and safely do scopes to watch for rejection for the next year. Eventually, they’ll take it back down and reconnect him.)

Anyway.. I put Patrick to bed a little before midnight. By morning, his ostomy bag was still empty. When his nurse gave him his morning meds, he couldn’t keep them down. And as the day wore on, it seemed his discomfort was growing more and more. But we told the team and the surgeon said get him up and maybe it will wake up. If not, then call and a resident could come use a small tube to help break up and drain out any small blockage.

Well, 2 p.m. rolled around and still nothing and Patrick’s belly really hurt. We called the resident. She was really hesitant and thought that it was dangerous to put a tube into Patrick’s stoma and new bowel. So she wasn’t going to do it without permission. The fellow (who is over the residents) had been in the hall pulling up chest x-rays during the conversation, so he hadn’t heard the instructions. It took another hour and a little bit of firm insistence before she finally consented to come do the procedure.

But, once she did. Patrick felt lots better. The nursing staff decided that they would insist that this be done once every 8 hours at least. Because of that, Patrick was much more comfortable for the rest of the afternoon.

All that pain made it so Patrick didn’t feel much like getting up and moving much. Thank goodness for family, though. When Brian’s brother Mark heard that we were going to be here for Thanksgiving, he and his wife immediately started to make plans to come celebrate Thanksgiving with us. They rented a house for the weekend so they’d have a kitchen to cook in. They drove here from Denver, arriving Wednesday night. Then, the night before Thanksgiving, they went and found a grocery store, bought all the food for the meal, and went to work.

So yesterday morning, while Heidi stayed behind and cooked, Mark and his kids came to play. They threw a ball, blew bubbles, put on a mini puppet show. They brought Patrick big smiles, even though he didn’t feel very well. Then, they went to help pack up the food and Patrick took a nap. He slept through dinner, and that was really ok, since he wouldn’t have been eating anyway.

For a Thanksgiving dinner in the hospital, this meal was amazing. As I’ve said before, this hospital is abandoned on weekends and holidays. So we set up dinner on one of the long tables in the cafeteria. We all ate until we were well stuffed. The kids played in the cafeteria and we rested and talked.

Then I came upstairs so Patrick wouldn’t wake up alone. Good thing, too, as he woke up crying in pain. His nurse got him a hot pack and some pain meds, though, and with his belly a little less full it helped.

Brian came up after his family had left for the evening and with pain medicine on board, Patrick was ready for a walk. We got the nurse to bring in a cart for some portable oxygen. His walking was stiff and clumsy and guarded… But getting up and moving seemed to have helped his lungs. His oxygen saturation was much better for the rest of the evening. That, after a day of restarting respiratory therapy, seemed to make a really big difference.

It was a busy evening, though. Nursing staff is short on a holiday so the nurses were running like crazy. But still, with several antibiotics on the IV pump in the evening, the pumps just beeped and beeped. Finally, we made it to sleep at midnight. Unfortunately, vitals woke up at 5 and then labs at 5:30 and so we were both exhausted by morning. Therefore, this late post. I’ll start writing about today next and hopefully post after adding a bit more right at bedtime.

Transplant Day 27 and Baby Steps

Well, since I blogged this morning, I don’t have a lot of updates. Patrick’s made steady progress all day. He still needs some oxygen support, but not as much. He slept till noon. He played in his wagon.

It was a good mail day. We got cards from Patrick’s kindergarten, a picture of the Salt Lake Temple from a friend, and a package from Patrick’s therapist and social skills group. Those things came on just on time to lift our spirits. Patrick was confused and sad to wake up in the ICU when he’d expected to go back to his room last night. Brian and I were just tired.

In addition to that, Brian went to Village Inn to pick up a couple of pies I ordered yesterday for Thanksgiving dinner. When I placed the order, they noticed my out of state phone number and asked what brought us to town. Well, when Brian got there to pick up the pies, she came out and explained that she had bought our pies for us. Just the kind of gesture to make the morning after a bad night better.

Patrick had a CT scan this afternoon to look at the current state of his lungs. That scared him and brought some tears… but they let Brian and me hold his hands and we even got some smiles during the test.

It’s been great to see his smiles. I hadn’t noticed how much they had been missing till I saw them come back. He is sore and afraid of being more sore so he hasn’t wanted to walk much. His neck is kinked and he doesn’t want to turn his head. But overall, he’s still feeling and moving better.

After it hurting to talk yesterday, Patrick has stayed with his default method of communication from yesterday. He is waiting for yes/no questions and then answering with sign language. This is better than not talking at all… but I hope his words come back soon.

We were transferred back to the pediatric floor today to a room that is a touch smaller but otherwise a mirror image of our previous room. Since his lungs are still kind of at risk, we are packing smarter this week… keeping things a little more put away and hanging fewer decorations on the walls. But it is nice to have more space and more quiet at least.

Brian’s brother and his family arrived tonight. They are making Thanksgiving dinner tomorrow. It was really fun to see them. Patrick was so content that he fell asleep in his wagon holding Mark’s hand. I don’t quite have the heart to move him back to bed yet.

Transplant Day 26 and Atelectasis

Atelectasis: the collapse of part or (much less commonly) all of the lung.

Last night was one of the hardest we’ve had here. Patrick’s fever reached 104. And he was really struggling to breathe. Anytime he’d lay down, his oxygen saturation dropped. Anytime he sat up, he coughed violently. Finally, at 1 a.m. his nurse put him on oxygen and as long as we slept with the bed up and me helping to support him sitting up as he slept, he was able to rest.

At 5:45 a.m. radiology came to take a chest x-ray. It showed that Patrick’s pleural effusion had about doubled in size. It also showed that both lungs had “atelectasis.” In other words, his lungs were partially collapsed because of pressure.

When the team came around, they said that he needed them to help get the fluid out. If the fluid was from a pneumonia or infection, they could culture it and give the right antibiotics. If not, then they could from there start looking for other explanations for his fevers. The effusion itself can cause fever.

But he’d need sedation and that meant he’d need to have his feeds shut off for 6 hours. And that meant the earliest time would be evening.

Getting him up was rough, but once he was up, he seemed to do better. To help with the lung collapse, we played games that made him take deep breaths. We used birthday blowers to knock down towers of cups. We blew bubbles. We played with whistles. This kept him doing as good as possible, but as the day wore on, he needed more and more oxygen. I just tried to keep him happy sitting up, playing games, coloring.

His new homebound school teacher Mr. Chambers. came this afternoon. Patrick was dead tired and had figured out that sign language was easier than talking. So, this isn’t exactly how I figured Patrick’s first day of school in Omaha would look. But – it was the first step and that’s what matters. We’ll have an IEP written by the end of the week and dive in with 3 one-hour school sessions a week. Mr Chambers is very nice and very compassionate, too.

Also, Home Health came to deliver Patrick’s enteral feeding pump, get signatures, and give us any training we needed. We’ve used this pump before, but it’s been a long time and we weren’t using it all the time before.. So I figured a refresher course was in order. This pump is tiny and lightweight and Patrick will have no trouble at all moving and playing while wearing it in a backpack. It’s purpose is to do a drip feed of formula into his stomach all day long until he is able to eat enough calories on his own.

————

At this point in my blogging, from yesterday got interrupted. It is now Wednesday morning and I’m going to fill you in on the rest of what happened last night.

About 4 p.m. yesterday, we heard from Patrick’s nurse than Interventional Radiology’s schedule was full and they were putting Patrick onto his schedule for 10:30 a.m. today. Thank goodness for our awesome nurse Debb who was worried about Patrick’s continual decline. She made a lot of noise and I think is part of why things are better right now instead of just starting right now.

A little later in the afternoon, the nurse practitioner came to check in on Patrick before going home and tell us the plan to wait till morning. We said, “What if things keep getting worse overnight?” She answered that if there were an acute emergency, they’d take him down sooner. So Brian asked what constituted an acute emergency. The answer: Needing 2-3 liters of oxygen. So we pointed out that he was already on 2 liters of oxygen and desatting when he tried to sleep. She countered, “but at least he’s resting comfortably.” And I said, “No.. he’s so uncomfortable he’s been lying there trying to sleep and is resting because he’s exhausted from the effort.” She left the room rather quickly at that point. Half an hour she came back to say that they were working on setting up the procedure as soon as possible.

That was at 6 p.m. They took him down at 8 p.m. Because things were happening quickly, we got to give the same general history a few times to a few different residents. But eventually, the anesthesiologist came over to explain that, with his lungs already stressed, they thought it safest to intubate him for the procedure.

And then we kissed him goodbye and they said it was a quick procedure and we’d see him soon.

The procedure actually was pretty quick. With general anesthesia, an hour and a half is really fast… and that’s about how long it took for the doctor who performed the procedure to come tell us that things had gone well. They removed about 250 cc’s (or a quarter of a liter) of milky white fluid from the sac around his lung. That doesn’t sound like a ton, until you imagine Patrick’s tiny body carrying around 8 ounces of liquid in his lung. Then it sounds like a lot. They let us see the x-rays last night. His right lung had been entirely collapsed.

She said they’d call us back soon. But then we just waited. And waited. And we finished our show. And I started a blog. And then a chaplain came looking for someone to visit. And it before we knew it an hour had passed.

(A side story about the chaplain. After visiting for a while, she asked if she could pray with us. She said the prayer and closed “In Jesus’ name.” Then after saying “Amen” she blushed and said, “I didn’t think to ask if you were Mormon.” We said that yes, we are. Then she tried to apologize for praying in Jesus’ name. So we had a minute to stop and explain that we do, in fact believe in Christ and pray in His name and that her prayer perfectly fit our method of praying… And then that’s when the doctor came.)

Back to the story – the interventional radiologist came back to tell us that they weren’t having success taking out Patrick’s breathing tube. His lungs were too weak and needed extra time to recover before they’d work properly. He was making significant progress and she was sure he’d be ok before long. But, to be safe and give him time to recover, she told us they’d keep him intubated till morning.

We were joined by a nurse manager who explained that in the hurry to get Patrick into the ICU, they’d put him into an adult room but that they were moving him to a pediatric room in under an hour and that they’d like us to wait till then to come back. We started to say, “OK. That gives us time to go clean up and move his things,” when we looked up to see one of the techs from the pediatric floor coming with a cart of things from Patrick’s room.

This kind of the last straw.. The idea that they couldn’t even wait for us to have time to get an update from his doctors before they were packing up and moving out his things. While we cleaned up, there was someone from housekeeping waiting because he’d been called to come clean the room and hospital policy requires that they respond within 5 minutes of the page. We don’t mind so much that they tried to help clean up and move the things… as the fact that he wasn’t even settled in the PICU before they had done it.

On our way out the door with the mountain of things that Patrick has accumulated during our stay, the nurse manager from the PICU came to find us to tell us that they had extubated Patrick. Ok, THIS was the straw that broke the camel’s back. Patrick was awake and we were downstairs cleaning his room and unable to go be by his side. She might have said something about “this is just how things go.” And we might have given her an earful about compassion. We are a little less angry this morning. But it’s going to be hard to bring ourselves to try to make Patrick’s next room feel homey again because it caused such a problem when he needed to move.

Anyway – with the fluid off of his lungs Patrick has been doing much better. He his heart rate is down, meaning his pain is going away. He is weaning off of oxygen. He is catching up on his very much needed sleep. His fevers are gone. His lungs are a little bit crackly, but that will probably get better once he wakes up and starts moving and breathing again.

They are still waiting for lab results about the fluid that was drained. However, right now the working theory is that he had developed a chylothorax. “A chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity due to either disruption or obstruction of the thoracic duct.”

I asked the team to teach me this morning what it means. What it means is this… Patrick’s transplant required cutting his lymphatic system. While it heals, it might become “leaky.” When they switched him to Elecare instead of Vivonex formula, they changed the type of fatty acid he was getting. And those fatty acids go through the lymphatic system and if the system is leaking, the fats can get trapped in places like the lungs.

Most transplant kids go through this. Patrick just got it worse than others because they switched his formula over so early.

They’ll go back to Vivonex formula. They will restart feeds slowly. They’ll watch closely to see if the problem comes back. And we’ll go from there.

It means more time in the hospital for him. But, hopefully before long they’ll get him back out of the PICU and onto the pediatric floor.

Transplant Day 25 and a Bad Day

Well again, I posted last night and then went to be with Patrick and things got worse. I’m kind of afraid to hit post early tonight.. But try hard not to believe in medical jinxes.

Yesterday evening, Patrick’s fevers started to show up even with Tylenol in his system. He also started to have coughs that he couldn’t suppress. He was so miserable, he just curled up on my lap and didn’t want to move. His nurse called the resident and more cultures were ordered as well as a chest x-ray. They also started antibiotics and an antifungal. Daddy gave him a priesthood blessing, too.

And then, we just tried to let him sleep. Sometime between 3 and 5, his fever broke. By morning, he was feeling better.. but certainly was not back to himself. His cough is still bad. He’s breathing heavy. And every time the tylenol wears off, his fever comes back.

I was frustrated during the night because I just kept hearing that everything was coming back negative. However, today when the doctors rounded, they said that they’d seen a pleural effusion in the x-ray. That means that there is fluid around the outside of his lungs. That is why it is hard to breathe.

Rounds were kind of refreshing. It’s nice that our input is both welcome and helpful. I told them about what had happened overnight, Patrick’s typical infection history and medication allergies, and my own thoughts and worries.

The current working theory is that he has some kind of respiratory bug, maybe a pneumonia. But his lungs sound good and he’s on the right IV antibiotics to help. So today’s orders were wait and watch. If things get worse, they’ll do a CT scan. Welcome to the world of immune suppression.

He napped all day and woke up with lower temps but more trouble breathing. He’s spent the day in bed watching Blues Clues. Good thing kids like watching the same DVD’s 1000 times. These TV’s are too old for our chromecast to work so we are limited to just what we own physically. We have enough for about a day’s worth of Blues Clues viewing and Patrick doesn’t mind rewatching the same thing over and over again.

I have tried to keep other things moving forward. Got him officially enrolled in school. His teacher should come tomorrow if Patrick is still doing ok. Got word that the insurance company has responded to the appeal and decided to cover the Valcyte after all. Ordered some more ostomy bag samples. Convinced the team that they still want to do our discharge training early this week in case Patrick gets better over the holiday weekend.

Alas, the evening has been hard again. His fevers have reached 104 when his tylenol wears off. His heart rate is high. His oxygenation is low, but holding. And he’s having a hard time keeping his medications down.

Darn holidays. We need a better kind of holiday tradition.

Transplant Day 24 and a fever

Well, I hit post last night and crawled in bed with Patrick as promised.. Only to have Brian notice as he moved Patrick to bed that he felt kind of warm to the touch. Patrick was running a fever of about 101. So they called the doctors and they ordered blood cultures (including peripheral ones, which means they had to use a needle which always makes him scared and sad.) Then, they gave him Tylenol and told him he could sleep.

His night wasn’t the greatest. He tossed and turned and felt like he was burning up. But, with Tylenol, he didn’t register another fever. And this morning he wasn’t the happiest, but he was ok.

I talked to the nurse this morning and asked if we could get cultures on the other side of Patrick’s line and also test to see if he had a virus. So they did a respiratory viral panel. (Sidenote, this is abbreviated RVP here, but VRP at home and they keep correcting us here thinking we are making a mistake, when really it’s just a difference in word order.)

The viral panel was negative and it’s been almost 24 hour and the first set of cultures is also negative. His lungs sound clear. Patrick’s done ok all day, though didn’t seem to feel much like himself.

They don’t usually start antibiotics for their transplant kids unless fevers either get really high or last a long time or they can’t find a cause.

Finally, this evening, we let his Tylenol wear off again. Patrick kind of curled up in a ball and started to breathe heavily. Sure enough, the fever was back at 101.

This is proving to be a tricky balance. We don’t really want to give him narcotic pain medicines anymore. But the alternative is Tylenol, which hides a fever. We don’t know if he’s really had this problem lurking but hidden for a while. And the team keeps saying that Patrick only ran a fever once in the previous day, when really it’s just that Patrick could only handle the pain of his tylenol wearing off enough to show a fever once in the past day.

Because Patrick hasn’t been feeling well, we have had a pretty quiet Sunday. I had to go do some laundry at the Ronald McDonald House this morning. While I was there, I did a little bit of rearranging and organizing to get the room ready for Patrick to come there. It’s small and organization is going to matter.

Then Brian called and said the elders were on their way with the sacrament, so I hurried back.

Usually, I would have done some homeschool-style Sunday School today.. But none of us really felt like doing much of anything.. So maybe we’ll wait till later in the week.

So, we are just waiting and watching and praying that if something needs to be discovered and treated, that it will be. Otherwise, we just keep planning for the best case scenario that Patrick might be ready to move out of the hospital one of these days. After all, it’s a holiday week and if we follow Patrick’s rules for holidays, something big has gotta happen.

Transplant Day 22 and Out of Bed

When I arrived in the room this morning, Patrick was sore. He had woken up in pain during the night and he did NOT want to get up. He didn’t want a bath. He didn’t want to walk. He had overdone yesterday and was tired.

However, about half an hour after I got him a bath, clean clothes, some tylenol, a heat pack and then coaxed him into his wagon, his physical therapist Kirsten showed up. Because of the success of yesterday’s Blues Clues game, we decided to try it again. That was motivation enough to get up. Patrick was hunting clues when the transplant team showed up for rounds. We walked right through rounds several times this morning, much to their delight.

Kirsten also showed Patrick that there is a mailbox on the outside of the playroom. She made him some pretend letters and they played putting them in and out of the box. (Making him squat and reach.)

Well, after therapy, Patrick was tired and decided to sit in his wagon and play games on his cell phone. It lasted for a while and I was able to make a few important phone calls and then Patrick was ready to get up and move again. I agreed to help him play Blues Clues one more time. Well, we got out in the hall and the social worker came by to talk about some questions I had. While we talked, Patrick got bored. And so he started to just wander around and play and… well, he realized that there was no reason for him to be staying in bed.

So, Patrick got up and started exploring and playing in his room. He played till 3 and cried when me made him stop to nap. Then he slept for 3 hours straight. (Yes, all that play wore him out.) Anyway… it’s nice to have our adventurous little boy back. And also, that is probably the end of our quiet peaceful days in the hospital.

Medical updates from the day: In rounds today they told us that the ulcers seen during Patrick’s scope might just be irritation from all this new gut has gone through. They are not worried.

They started adding some saline solution to Patrick’s feeds today, which increases the volume of his feeds. We hope that it will make it so he doesn’t need IV hydration. We just need to see if he can tolerate the extra volume in his feeds. So far, so good.

In other GREAT news, we found out today that Patrick has gotten pending approval for patient assistance for his antiviral drug, Valcyte. This one is only covered by my insurance in pill form and, uncovered, its price tag is over $1000/month. This approval is temporary and requires that we appeal the insurance company’s decision. However, it is a HUGE weight off of my mind.

And on that note, let’s make tonight’s educational series about medications. Patrick is going to be on a variety of medications as a result of his transplant. They include:

Prograf: To prevent rejection. At first, these are going to be very high levels, which means he will be very immune surpressed. The days of letting him lick the sidewalks as part of childhood are over. We are trading that in for lots of isolation and hand washing and mask wearing. He’ll be on this the rest of his life.

Prednisolone: Is a steroid that also prevents rejection. It also suppresses his immune system. It makes him grumpy and impulsive and sometimes makes it hard to sleep and makes his face a little bit rounder. And he won’t be on this long-term. These two drugs make it so Patrick can’t really control his anger. He’s happy most of the time, but when he’s not, the only way to help is to walk away because being there just feeds the crazy feeling. This has been hard, especially at night.

Valcyte: This protects him from a virus called CMV or cytomegalovirus that is almost unnoticable in you or me but has serious repercussions in people with surpressed immune systems. It’s crazy expensive but also crazy important given how much of Patrick’s immune system they wiped out. He’ll need it for at least a year.

Bactrim: An antibiotic to prevent pneumonia. He’ll need this till they back off the immune suppression.

Penicillin: Another antibiotic he’ll be on for his entire life because he doesn’t have a spleen.

Ranitidine (or Omeprazole): to reduce acid and his digestive system heal. He may need this for life.

Norvasc: To help fix the high blood pressure all these other drugs cause. He’ll need it till this problem goes away.

Lasix: Because for some reason, Patrick’s body likes to hold onto too much fluid since transplant. Just needs it till the problem goes away.

He’s also allowed Tylenol for pain. (But no ibuprofen again.) He’s also given a multivitamin in his formula. And some sodium bicarbonate (baking soda) to keep his CO2 levels right. And some saline solution for hydration. And right now, he can have a medicine for nausea.. but hasn’t needed it in a few days.

He can’t miss doses… But honestly, this is a much easier sounding regimen than I imagined it would be in our pre-transplant training. Just every 12 hours and keeping track of a few due only on certain days. The pharmacy team has come a couple of times to train us on all this… But even they have decided that our experience makes this not all that difficult compared to what we are used to.

IMG_20141121_151438

Transplant Day 21 and baby steps

Today was a relatively quiet day. In fact, by the end of it, I think we all were feeling more than a little stir crazy from being in the same room together doing the same things day in and day out. But quiet is good.

Patrick definitely had a better day. Between the slight reduction in feeds and me finding a way to be super sneaky and unsmelly in emptying his ostomy bag, he didn’t spend the day feeling sick. That left him free to try other things.

Like walking, for example. The physical therapist came by and encouraged us to let go of his hand and try walking. He was a touch unsteady and there certainly moments where he moved the wrong way and it hurt. But he did it. And it gave me the idea for a game that kept him motivated to walk several more times. Because Patrick loves Blues Clues, I drew some pawprints on slips of paper and I hid them in strategic places that he would have to bed or reach a little to get. Then we’d go play Blues Clues and find the pawprints. He actually was really upset when I wouldn’t play anymore tonight.

And speaking of pawprints, we decided to go check out pet therapy today. They have several specially trained dogs that visit the hospital. Very sweet and obedient. Patrick was more fearful of them than I expected.. perhaps because he’s still sore and was afraid they might jump on him. But it gave us someplace to go to today, at least.

The other big news is that Patrick’s biopsy results came back. Amazingly, today’s rejection score was a 0. No rejection at this point.

That leaves us with a few goals to work on. 1) Get Patrick’s feeds back up that 5 cc’s more to 95 without making him sick. 2) Switch him over from IV replacement fluid to replacing lost fluids through his g-tube. As long as he has an ostomy (which will be over a year), he’ll need a little bit of extra hydration. 3) Get a plan of how to pay for Patrick’s Valcyte. It turns out that they missed checking a box on the patient assistance application and are now having to reprocess it.

I’m spending tonight at the Ronald McDonald House. It is strange to be here. It is strange to know they are there. I also have gotten quite used to going to bed with Patrick so staying up late to finish the laundry has me quite tired. And that is making me appreciate my husband because he has been doing this for us every few nights for the past several weeks.

I also appreciate the flexibility of the people he works for and with. I have been trying to find a way to give him more time to catch up on work. And in the end, he just keeps setting aside what he’s doing to come in and save me.. to make sure Patrick is up and walking, to make sure I get a chance to eat and shower and change my clothes, to snuggle with Patrick so he can nap.

Before long, we are going to have to let him go.. and I can tell you I am going to miss having him here. Patrick will too. Which is part of why, despite Patrick’s protests about my leaving, I am here and they are there tonight. At least, in my mind it is.

Transplant Day 17 and feeling better

During the night, Patrick’s temperature got higher (but just under the official fever line) until, at midnight, he woke up feeling uncomfortable. The nurse brought him some pain medicine and it seemed to break. By this afternoon, Patrick’s temperature was back to normal. Who knows what exactly triggered the change, but he certainly seems to feel better today.

Today’s been very VERY quiet. So much so that Brian and I are getting more than a little stir crazy. We held our first family Primary (sunday school) this morning. We colored. We went for several walks the entire length of the pediatric unit. Patrick and I snuggled up and read books. We played with almost all of Patrick’s toys. And we got to video chat with my family at the end of their Sunday dinner.

Patrick’s feeds are up once more. And otherwise, things still seem to be moving in the right direction.

So – with so little news, I thought we’d start a little educational series about what changes transplant means.

Let’s start with what changed. Patrick was born with Short Bowel Syndrome meaning that his entire small intestine and 2/3 of his large intestine were missing. Over time, his liver has become scarred by TPN. So he had a multivisceral transplant.

This is the anatomy of a normal GI tract.

The greyed out portions are the parts of Patrick’s anatomy that were missing.

The in this image, the purple portions are what was transplanted.

Patrick was given a new liver, duodenum, small intestine and pancreas. The pancreas comes along as part of the liver/intestine transplant package because those organs are all connected. To make room for the new organs (and because of other complications) they removed both Patrick’s gall bladder and spleen.

Normally, they also remove part of the stomach to make room for the transplanted organs to swell. However, because we asked for Patrick’s g-tube to be saved (because we didn’t think he’d be good long-term needing a tube in his nose) the surgeon saved most of his stomach, but divided his duodenum into a Y shape that should keep him from having too much trouble with reflux. (The sphincter of the stomach can’t be saved in this type of transplant, so they have to build in a different mechanism. Also, for some reason making the stomach smaller in transplant is important because most often the underlying disease makes the stomach not work as well.) If you follow along with medical stuff at all, this procedure is called a roux-en-y.

Having no spleen does leave Patrick with an extra level of being immune compromised. He’ll have to be on penicillin for the rest of his life. However, his spleen had been so damaged because of infection and TPN-associated liver damage that it wasn’t going to do him much good anyway. Kids with intestine problems often develop problems with their gall bladders, too.. so that just got to go.

Obviously, this was a huge surgery, as they removed or replaced pretty much everything between Patrick’s stomach and colon. And that means a lot of immune suppressants to prevent rejection. But, the new liver will actually help prevent rejection of all the other organs.

And that is what we’ll call Patrick’s new anatomy 101.

Transplant Day 14 and Daddy’s back

I think our biggest news of the day is that Brian got back from his short trip. Patrick and I were so glad to see him that I’m afraid we didn’t let him do anything else.. Just play with or cuddle Patrick. Patrick was so happy to see him.

Otherwise, just continued forward progress on the same milestones. Increased feeds. Walked a little farther with a little less support. Sat up a lot more with a lot less pain. Decreased pain medicines.

I shopped for home health companies today. I guess it’s kind of uncommon for the patient to call up and say “I want to make sure you can get me the following supplies.” Usually, setting up home healthcare is something the hospital just takes care of for you. But I wanted to be sure that we would have access to all the things that make Patrick’s life better. I think we found a good fit. Just one more tiny step towards our next goal.

Tonight was movie night in the hospital. The literally put out a red carpet. Then, they set up a conference room to look like a movie theater, complete with boxed candies, popcorn, pretzels and pop. Patrick has only been to a movie in a theater once. I wasn’t sure how this would go.. But thankfully the movie was Planes Fire & Rescue, which had that “I love cars” appeal. He did a lot better than I expected. Guess he’s 1)growing up and 2) not feeling great so screen time has a greater appeal.

I was talking with another family yesterday. We decided that adults could learn a lot from the way that kids do illness. I mean, imagine if you had to go to the hospital. Would you prefer to just sit in your drab hospital room reading? Or would you prefer to have a room all decorated in bright fun things, to have someone bring you your favorite hobbies every day, and to have a low-key party once a day? Wouldn’t you find getting better easier that way? Kids know what they’re doing. We grown-ups are the ones getting it wrong.

Another milestone: Patrick willingly went to sleep in his bed while I laid in the parent bed across the room. He is feeling more at home here.

2 weeks ago tonight our transplant team was looking at a transplant offer deciding if it was time to call and wake us up and tell us to come. Patrick is doing so well for just 2 weeks in.

Transplant Day 13 and a little fun

Well, we survived another day here without Daddy. (Brian was gone yesterday and today for work.) In fact, today was a little happier. Unlike yesterday were his steroids were making him feel out of control, today Patrick was just loving and fun. We got up early and gave him a bath right away which he didn’t want and cried a fair amount about. (In hindsight, the nurse had told me she’d given his medication later than I thought and I was starting him out kind of in pain.) But once he was settled in his wagon, all was good.

We mostly just hung out in the room again for the morning. A volunteer came and they played while I cleaned up. He asked for and took a nap all on his own. During his nap, I snuck out to call my insurance case manager. With Patrick progressing so well, the team wanted to make sure we start working on a plan for home health care just so that doesn’t end up being what keeps us here. I also had to take a little minute to finish up some school enrollment paperwork. And then, it was back to play.

We painted. We opened the mail and played with the gifts inside. We used some of Patrick’s birthday money to buy a learn-to-spell game that they had in the book fair downstairs and played with that for a while. As an extra treat, one of the Short Gut mom friends that I’ve known since the very beginning of our support group arrived here with her daughter and husband today and we got to spend some time in the playroom together. She coaxed Patrick into showing her how his walker works. (He’s been refusing to use it to walk.).. and he stood up and basically ran across the room. That was enough to sell him on it. I told him it makes him extra strong and extra fast and so he stands up in it and away he goes. I think that’s the beginning of a lot more freedom for him.

And then, to top it all off, an awesome group of volunteers came and put on a “carnival” for the kids today. They had carnival games and really hammed it up to make it fun. I don’t think I’ve seen Patrick laugh that hard or often since he got here. And they sent him back with a prize to boot. I was really very proud of Patrick because he listened and obeyed when we told him that he should wear a mask to the party.

Then, we came back, ate dinner and he asked to go to bed. Tonight, he even chose, after playing “you’re a little sweetie” for a while, (that’s a game where he hugs and kisses and gives ugga-muggas and then calls us sweeties for it), he even chose to let me get up out of bed and let him fall asleep alone.

Good news of the day: Patrick’s feeds were increased again today.. twice. He’s now at 8 times more than he ever tolerated before. Also, we were able to space his pain medicine more than we have before. Tonight he told me he didn’t want it because it makes him feel yucky. I’m listening and we’ll see how he does tomorrow with tylenol mixed in to help us spread out the stronger drugs.

Also, I think I figured out how to work the ancient heaters in the room and this place no longer feels like a sauna. The colder it got outside (and it’s well below freezing at night), the hotter our room was getting.