Patrick Hoopes

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.

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.

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!

Transplant day 19 and my birthday

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

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.

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.

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.

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 http://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.

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

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 16 – Something brewing?

I suppose it is my (Brian) turn again to blog tonight. I left the hospital to come back to the Ronald McDonald House to get some laundry done about 8:15. When I left both Emily and Patrick were asleep. They needed it.

It snowed today. Snowed most of the day, kinda made things feel a little like home.

A patient with Ebola arrived at the medical center this afternoon. Not that I saw him, or will really see or hear anything different. But it is strange knowing that the floor above where Patricks room is is the temporary home to a man that has an illness that is so feared. I must say that it doesn’t overly concern me.

My parents were still in Omaha for the morning. They came and visited Patrick, and when it was nap time, I took them to see the Ronald McDonald House. We also went over to the Winter Quarters Temple which is here in Omaha. The visitors center was busily preparing for a gingerbread house festival that will start next week. There were a few gingerbread houses already on display. We’ll probably go back and check it out. My parents left this afternoon, they were trying to get about 4 hours towards home (North Platte, NE), they only made it about 2 hours from here (Grand Island, NE), and decided it was wise to stop. The snow was supposed to let up this afternoon, but that didn’t happen.

Patrick spent most of the day running an almost fever – 99.6ish. The docs commented that his white blood count is trending up. He was also a little moody and tired today. Seems like he might be getting sick. What does that mean? We don’t know yet, if he does get sick chances are he will get really sick as his immune system is pretty much wiped out at this point. We’ll see where that takes us, and we’ll see if it turns into a real illness. Stay tuned.

Despite being tired Patrick was still up and about today. He walked to the play room this morning, and than back to his wagon, then to bed. This afternoon he walked to his wagon, then to the play room, and then back to his wagon, and then to bed. It is good to get him up and moving.

This weekend is “National Donor Sabbath” the intent is to educate others about organ donation. I figured I would put in my two cents about the subject. Obviously we are hugely grateful for someones choice to be a donor. I’m registered for both organ donation as well as bone marrow match. I encourage you all to think about becoming a donor and let others know about your choice. Obviously that is an incredibly personal decision, please consider it if you haven’t. For more information on National Donor Sabbath checkout http://donatelife.net/nds/

Have a good Sunday tomorrow.

Sorry we didn’t take a ton of pics today.

Transplant Day 15 – Another quiet day

Not a ton to report today.

The surgeon that performed the transplant is the attending this week. During rounds she was excited to see how well he is doing, and she emphasized to the team that it was their job to keep him from getting sick, in other words don’t even think about coming to work sick, and make sure not to bring him bugs from other kiddos. Life is going to be different post transplant, lots of masks, hand washing, and generally avoiding people (not that we don’t love you).

Patrick had his staples removed today. He was of the opinion that they needed to stay. I guess that illustrates that he doesn’t really understand what is going on. Because they were going to remove his staples they gave him something to calm him down. The only problem is that it made him fairly emotional, which made for an interesting afternoon. Anyway the nurse practitioner removed 30 staples.

We received a few visits starting to teach us about what it is going to be like with Patrick outside the hospital. One of the visits was from the pharmacists who went over all the meds that Patrick gets to take for the rest of his life (and some for only a year). Some of those meds are going to be pricey, I thought to myself that is why we have COTA and did the fundraising (thanks everyone for your support). We need to get a lot of things figured out so when the time comes to be discharged we will be ready. Discharged meaning to the good ol’ Ronald McDonald house.

My parents arrived tonight. It is a long drive from Utah to Omaha. They did what I did last week and stop at my brothers half way. Sounds like they are going to start the voyage back tomorrow. It is nice to have them here, tomorrow will be nice to have a few familiar faces even if it was for a short while. However with snow in the forecast here for tomorrow I hope they have a safe drive.

Here are a few pics from today:

We have been teaching Patrick about keeping the germs away. He wore gloves by his own choice the whole time he was in the play room.

Patrick requested Tubes to come to his room today. Tubes is a doll that has all the same things Patrick has, a line, a g-tube, and today he got an ostomy bag. Tubes helps Patrick be brave for procedures.

Patrick received a large box of hot wheels today, he enjoyed opening each of them.

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.