Transplant Day 25 and a Bad Day

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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.

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Transplant Day 24 and a fever

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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.

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Transplant Day 23 and Not Much New

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Weekends in the hospital, and especially Saturdays, are pretty quiet. Today has been a quiet day. They started giving Patrick replacement fluid to keep him hydrated in his g-tube instead of by IV. So far he seems ok with it.

Patrick definitely overdid yesterday and has needed a day to rest and recover. So we took naps and he played with a volunteer while we grocery shopped and we went to the rooftop garden, then came back in because it was too windy. This evening he’s doing watercolors in bed because he is determined to play, even though he is really feeling too sore to do it.

And that’s about all that happened today. I’m skipping education tonight to go snuggle my little boy because his belly hurts.

Transplant Day 22 and Out of Bed

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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.

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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.

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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.

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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.

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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.

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Mail

Patrick is doing well.. And the mailroom is slow. Therefore, to make sure that one day, when Patrick is able to go outpatient, he can still receive your mail, please use the following address. It will stay the same no matter where he is.

Patrick Hoopes
c/o Ronald McDonald House
620 S 38th Ave.
Omaha, NE 68105

Thank you for the many cards and packages you have sent. They brighten his day and lift his spirits.

Transplant Day 20 and biopsy number 2

I will warn you that I am posting from my cell phone so if you notice strange errors you will know why.

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Last night, the whole family felt kind of tired and discouraged and I decided blogging would have to wait so I could comfort Patrick. The day went a bit better yesterday. Patrick had to go without food for the morning to be ready for his scope. They gave him some IV hydration and let his belly rest. This let him also rest from his nausea and that helped a ton.

They did his scope bedside. (Something that still amazes me, but it is why he will need a stoma for a while.) Daddy laid with him this time while child life came and brought lots of distractions. That meant I watched more this time. They put the scope into the stoma, take some pics, then insert a tool that pinches off tissue for a biopsy. The intestine still looks mostly healthy but they saw a couple of small ulcers yesterday. Waiting for biopsy results tomorrow (or is it today?) to say what that means.

Just as they decided to come up for this, I got a message from a long time Facebook friend, Andy Jablonski. Andy is an SBS survivor.. In other words, a man who has lived with short gut his whole life. He runs a foundation called the SBS foundation. Here is his website. We have worked together for years because we promote the same cause. And as he is a patient here and has some testing, he came up to visit. 

Patrick was thrilled to meet a grown up with scars and a line. I was happy to finally see face to face someone I have so often talked to.

Funny thing, though. I was telling Brian he was coming at they set up for this scope. And the woman radiology technician recognized his name and asked how I knew him. When I mentioned my support group, she then recognized me from my picture on the page.  It is odd to be here where people know me. In Utah, I am mostly anonymous running my little website and support group.

After the scope, while Patrick napped, I snuck out to make some calls. To help with the cost of prescriptions and other copays, I am chasing an adoption subsidy and a medicaid waiver wait list. Not to mention negotiating with insurance to set up care here. And getting things set up for Patrick’s prescriptions to be shipped here. Oh, and trying to get Patrick homebound school. I could spend all day on the phone.

But I try not to. I try to give Patrick and his daddy time as much as I can so we painted and did other crafts, went for a walk, watched Blues Clues. But none of it could fix his melancholy like a call to grandma. And most of all, we needed sleep.

Thank goodness for nurses. Patrick’s nausea is better since they switched him from vivonex to elecare.  His ostomy still makes him feel sick to look at our empty, though. (Gotta get some pouch covers somehow. I miss my sewing machine.) Last night, I got wondering if we could find a way to close the circuit while emptying to keep him from smelling it. So I mentioned the idea of bedside drainage (a tube from the ostomy pouch to a bag by the bed.) It is more work for them, but she readily agreed. Between that and her regularly providing warm packs and Tylenol, Patrick had had his first peaceful, uninterrupted night’s sleep in several days.

Therefore, sleep deprived mommy feels totally rested at 5 am because 7 hours if uninterrupted sleep (well, except vitals) is a luxury.  And I can blog before going back to sleep. Thank goodness for nurses!

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Transplant day 19 and my birthday

Sorry this post is a bit delayed because Comcast went down, taking our server with it last night.

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Patrick and I started the morning with a happy, snuggly conversation in bed. He woke up feeling sad after a night of not sleeping well because his nose was stuffy, so I figured we both needed it. I told him it was my birthday. He told me it was his birthday. I told him he could keep having a birthday till Thanksgiving and that we’d share yesterday. I asked him how old i might be. He said 8. Almost. I’m 35: 3+5=8. Then I told him, as I always do, about how on my birthday I like to remember that he is my best present. (We were first granted custody of Patrick on my birthday 6 years ago.) I asked him if I could wrap him up and put a bow on his nose. He said no, but it helped him giggle.

My birthday celebrations were simple. Brian brought me breakfast and some presents. When the child life stopped by, Brian told them it was my birthday. They sent one of Patrick’s favorite volunteers right around lunch time, so that we could go out. We went to Cheesecake Factory and ate the biggest meal we’ve seen since we got here. I forgot to take a picture of my cake before I dove into it. (Hungry.)… But the pineapple upside down cheesecake was delicious as usual.

I spent most of the rest of the day just being with Patrick. That’s where I want to be, anyway. For some reason, he started to feel very nauseous yesterday. His nose is stuffy and he has a bit of a cough and sneeze. We don’t know if this is the reason. However, seeing his ostomy and especially emptying it became unbearable for him yesterday. He gets extremely sick just at the thought. We are trying to make our way through it for the time being by covering our heads with a blanket while we do it so he can’t see and smell as much. But I’m also going to be ordering some products online that I hope will help.

The nausea just got worse as the day went on, though. He started to feel sick if he laid down. Eventually, we were pausing feeds and giving him Zofran, a medicine to help with nausea. Patrick had a really rough night. Right before bed, he got really sick and tried to throw up. (Can’t quite figure out what the surgeon did to make it so that doesn’t happen. She didn’t mention anything to explain it.) He had some blood in his diaper. (They say this could just be surgical scabs falling off.) And he just had a hard time staying comfortable. Eventually, we ended up sleeping with the bed upright and him propped up on me and he managed to get a little bit of sleep.

Patrick has been on a continuously fast, upward path since transplant. So far, he is still miles ahead of where most patients are 3 weeks out. Transplant recovery is a rollercoaster of good and bad news. Hopefully this is just a small setback. The nurse practitioner from the transplant team just stopped by and didn’t seem to feel that any of this was exceptionally worrisome.

Today he was already scheduled for a routine scope and we hope that there will be some good news there.

Meanwhile, though, lest you worry about me not having had enough celebration for my birthday.. just remember that I got what I wished for most. Real food. Phone calls with people back home. A day with my little family. Birthdays don’t always have to be parties. Patrick got a sheet of stickers yesterday in the mail. His birthday gifts are very prized possessions. Immediately, he covered me with the stickers, then gave me a hug and told me Happy Birthday. And even as he was having a hard time sleeping last night, he snuggled up and wished me one more Happy Birthday. He gave me all of the very best he had to give yesterday. THAT is more than anyone could really hope for, no matter where the day is being commemorated.

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Transplant Day 18 and a quiet milestone

Sometimes you reach an enormous milestone only to find it horribly anticlimactic. Today, because it’s Monday, a new attending surgeon came on duty. He came in, heard Patrick was 15 cc’s away from his feeding goal and said, “let’s get him off TPN today.”

So, after turning up feeds all morning, Patrick’s nurse came in this afternoon while he was napping, flushed his line and turned off his TPN pump. After 6 years of total TPN dependence, Patrick doesn’t need TPN. Right now he’s getting all of his nutrition in the form of enteral feeds. (Enteral means to the belly.) That moment seems like it should have been bigger.

If you're not used to looking at IV poles, you might not notice that this IV pole has 2 big differences. There is no yellow bag of TPN. And the IV pump is turned off.

If you’re not used to looking at IV poles, you might not notice that this IV pole has 2 big differences. There is no yellow bag of TPN. And the IV pump is turned off.

Patrick’s food is now super elemental (simplest form of protein so easy to digest and hypoallergenic) formula called Vivonex. A pump helps run it through the g-tube into his stomach. Eventually, we hope he’ll learn to eat. But for now, feeding through his stomach instead of by IV is a huge step.

He still gets a few ounces of hydration by IV a few times a day, but otherwise that pump is turned off.  He’ll keep his central line till we’re really sure he won’t need it. Just because getting a line in is so hard for him.

A music therapist came by to sing and play music with Patrick this morning.

A music therapist came by to sing and play music with Patrick this morning.

With the feeding goal met, we are now working with the pharmacy on getting set up for Patrick’s many, many medications. One of the most expensive ones isn’t covered by our insurance in its liquid form. We are working on a requesting patient assistance and/or appealing the coverage because, well, if you saw the price tag on this drug it would make you feel a little bit sick, I think. They want me to pick a local pharmacy. How do you do that in a city you know nothing about?

The other big accomplishment of the day is that we backed way off on Patrick’s pain medications. We dared start tylenol again, so it’s time to wean off of the narcotic. Brian ordered some Blues Clues DVD’s (because we were getting more than a little sick of watching the same episode 10 times a day.) He turned them and then set a goal… after every episode, Patrick was to go for a walk. Without his walker.

This got better as the day wore on. The only time Patrick struggled was after laughing really hard when his meds had worn all the way off.

Patrick took most walks just holding a hand today instead of a walker.

Patrick took most walks just holding a hand today instead of a walker.

Why was he laughing? Well, they had a troupe of clowns visit the hospital today. And, well, it turns out that clowns doing slapstick humor is right up Patrick’s alley. He belly laughed the whole time. It was awesome! Thanks to Professor Jerkelle, Basil and Wheels www.geocities.com/pieclown .. All that laughing left his belly a little too sore to walk. But with some pain medicine and back in bed, Patrick took an awesome afternoon nap and all was well.

Patrick and the troupe of clowns who kept him laughing and paying attention for a full hour.

Patrick and the troupe of clowns who kept him laughing and paying attention for a full hour.

So a big day, but so quiet for such a momentous occasion.

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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.

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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.

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

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

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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.