geekino

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.

Daddy’s work sent a personalized Av’s sweater. (31 for Patrick’s transplant day.).. and he wore it all day

We turned the craft table into a painting table today.

Patrick coloring in the playroom. Notice that he is sitting in a regular chair.. without back support.

Playing carnival games. The man who dived in as Patrick’s guide was so kind and devoted to making Patrick happy.

Fishing at the carnival game. Equally devoted in this group of youth was the young woman who sat under the fishing table for the entire event.

Transplant Day 12 and an IEP

Forgive the brevity of this post. Also forgive the lack of pictures. I am blogging from my phone while Patrick sleeps on my shoulder. We had an early morning and a late and interrupted nap. He was ready to crash early.

Not much new today. They doubled feeds and cut TPN again. They also cleared him for solid foods so we celebrated with Pringles, pretzels and a ham sandwich. (They are always so surprised to learn he likes to eat. If only he swallowed.)

They also decided to cancel tomorrow’s biopsy because he is doing so well they figure it wasn’t worth the infection risk of a trip to radiology.

Today, I had a phone IEP meeting with Patrick’s school in Utah. His IEP has lapsed and we wanted one in place for this year. I am really happy with the goals and pleased with the fact that they took seriously writing an IEP as though he were staying. I wish I could see it executed just this way. Alas, instead I submitted Omaha enrollment forms today and get to have another IEP meeting in a week. I hope some portion of what was written today can carry over.

Otherwise today was pretty quiet. Patrick is moving a little better. But he kind of was feeling of off today and chose to play alone a lot. He sat to next to me on the couch for stories this afternoon, though, and that was a treat. Hasn’t felt up to that in a while.

Anyway.. Forgive my mistakes and brevity. Blogging by Swype is kind of hard.

Trying to change the world (SeaWorld that is)

This is not a transplant update. But it is a blog post that needed following up on for a while.

As you know, we went on our Make-a-Wish trip in September. You may or may not have noticed that we kind of glossed over writing about our visit to SeaWorld. The honest truth is that, other than the awesome dolphin encounter experience we had there, our trip to SeaWorld was not a good one.

Patrick was on a roller-coaster high after a week in theme parks and so he asked to ride more rides while we waited for the dolphin and whale shows. However, as we started to ride rides, we came across a funny thing.. the park staff seemed pretty uncertain about allowing Patrick’s TPN backpack on rides. They have a safety policy against “loose articles” on rides. We got a few ride operators to let him ride.. But when we got to the ride Patrick wanted most, the kiddie roller coaster, they wouldn’t let him on. Not unless he could leave his backpack behind.

This seems logical, right? Just take it off, ride, put it back on. Except that the risk of infection shutting off TPN is pretty significant. And suddenly shutting off TPN can cause hypoglycemic shock.

We asked for a supervisor. They supervisor also turned us away. We were pretty mad. I convinced Brian we could work it out. We went to guest services.. they were too busy for us. I saw a supervisor leaving Guest Services and chased him down. He also didn’t have a ready solution for us. He said he’d need to call for someone. So we told him we were going to go catch a dolphin show and come back.

During the dolphin show, a lightning storm rolled in and essentially shut down the park. We gave up. We left. (Now I’ll never see Shamu.)

But it didn’t sit right. Earlier this year, the Oley Foundation (a non-profit devoted to tube feeding) held their annual conference blocks from SeaWorld and I knew that many families had turned that into a mini vacation. So I asked if others had run into similar problems. Unfortunately, the answer was yes. Many had been turned away from the kid rides with because of their TPN and other medical equipment.

So I wrote to SeaWorld. And I wrote to them again. And I sent them messages through Facebook. And eventually, a few weeks later, a manager wrote back and fairly generic and non-promissory reply, expressing regret that I was frustrated my visit hadn’t gone as expected. He also invited me to visit him on my next visit to the park to discuss accommodations.

That evoked a kind of lengthy reply from me. Of course I wasn’t going back to SeaWorld in person to discuss the problem. But the delay in reply made me even more certain that something needed to be fixed.

So I wrote a nice long e-mail. I explained tube feeding and its unique challenges, quoted the American Disabilities Act, and appealed for a conversation about how to improve the park’s policies towards patients who have to carry medical backpacks. I made an appeal to help make a better experience for others, not to make things right for our family, but for those who come after us.

I wasn’t getting far with e-mails. I wanted the conversation in writing. They didn’t. They gave me a phone number to call and I kept putting it off, then things got busy. And I didn’t have time to call him back. Until today. Today I had a good talk with the manager of Shamu’s Happy Harbor at SeaWorld Orlando. I wish I could say that they had revoked their no loose articles policy for medical backpacks. That didn’t happen. They did, however, say that my e-mails had prompted some conversations about improving park accommodations for tube-fed patients and using some common sense on a case-by-case and ride-by-ride basis to determine where it is and is not safe to ride with tube feeds running.

So, for those perhaps considering a trip to SeaWorld Orlando with TPN, enteral feeds or other medical equipment, here are some of the things you probably want to know.

1) You should stop in first thing at Guest Services and ask for a ride accommodation pass. This may take some time. But they’ll go through ride by ride and help you figure out what you can ride and give you a pass identifying you as a safe rider.

2) If you encounter a ride operator who says you can’t ride when you feel it would be safe to do so, you should ask for a manager. Please note, a manager, NOT a supervisor. Only a manager has the authority to override park policies.

3) Be ready with a plan of how you can secure your backpack during the ride.

4) Know that training in this area of medical need has not been a standard thing for ride operators. We talked about that a little today and I was promised they would improve training.

5) Know that this isn’t going to get you on all the rides. So, if you really aren’t devoted to the rides, plan to enjoy the animal shows and other experiences so you won’t be disappointed.

This wasn’t the big policy change I hoped it would be. I think a lawsuit probably would have been the only way to really force that and, to be honest, that is not my style. I prefer the “let’s talk together and work this out” approach. I was pleased, however, to find that my efforts at education and advocacy weren’t completely wasted. The manager I spoke to told me that just that week he’d bent park rules to allow a wheelchair with oxygen attached onto a carousel where previously they would have been forbidden by the letter-of-the-law. So one heart at least was perhaps touched, and that will affect conversations and training.. and maybe with time and some patient teaching from future visitors will make a difference.

I’ll share what I learned with Give Kids the World and in the groups that I participate in. Maybe if we all work together with the positive expectation that SeaWorld will live up to these promises, they will get more used to offering accommodations and fewer people with have the kind of disappointing experience we had.

Transplant day 11 and a tired tummy

IMG_20141110_184332 Still moving forward today. G-tube feeds went well overnight and so they doubled the rate to 10 cc/hour this morning. So far, so good.

The physical therapist came by and she was very pleased by how well Patrick is doing. In fact, most of our talk was a reminder to me of how important it is to watch and slow Patrick down for a little while so he doesn’t accidentally open his incision.

He’s slowed himself down a fair amount anyway, though. He kind of overdid yesterday and his sides are hurting today. So we did a lot more resting and gave more pain medicine. He did still walk to the playroom and sit at his desk. He also napped a lot and rested in his wagon.

We asked the woman from child life for help finding a volunteer to get me back to our room for a shower, change of clothes, and a filling meal. Well, the first volunteer showed up at 1. I was actually a bit upset because it was earlier than I expected.. but I went and it was good to get clean and to rest. And it was good that Brian got to spend a little bit of time working and taking care of other things today, too.

Meanwhile, the sweet grandma-like lady who shuffled me out for a break watched Patrick while he napped, put on movies for him, and then took him to music therapy.

Patrick came back from music therapy grinning from ear to ear, laughing and talking about the drums and “ma-ca-cas.” He had a great time.

However, then new volunteers just kept coming. We sent the ones who came at 3 away. But at 5, we let them stay and went to the store for a few needed things and then out to dinner. And now i know that I need to be careful what I ask for in a hospital where spending time with the cute 6 year old is the appealing task on the job list. Actually, I think I’m going to come to really rely on those volunteers to help me take care of myself. The combination of tired, head-achy and hungry had me quite unhappy this afternoon. It is so nice that there are people willing to come in and help me with Patrick so I can take care of me, too.

One clarification that I was asked. I have been saying they “clamped Patrick’s stomach”… what I really meant was that they closed the clamp on the drain from Patrick’s stomach. No actual clamps on bellies.

Transplant Day 10 and the Sabbath Day

Overall, today was another peaceful day. I’ll admit that I think Brian and I are beginning to feel a bit slothful. But I think we are on the road to that changing (in a good way) soon.

Today’s milestones:
1) We asked the doctors if it was time to remove the IV in Patrick’s neck. The answer was an emphatic, “yes!” We didn’t find a good time till evening, but Patrick is much more comfortable.

2) After tolerating clamping and tastes of food yesterday, they started feeding formula into Patrick’s stomach through his g-tube. The rate is only 5 mL/hour. However, that is the most we had ever succeeded in feeding Patrick before and it’s the starting point now. It’s only been running for an hour, so we’ll see how it goes. But so far, so good.

3) This morning when Brian asked Patrick if he wanted to get up to walk, it made him cry. However, at 10, after some pain meds, he got up and walked to t

he scale to be weighed. We pointed out the playroom two doors down the hall and offered to bring a chair he could stop to rest in on the way to look inside. Not only did he make it there, but he decided to stay to play. 2 hours later he was looking tired so I coaxed him back to the room.

Patrick got into the playroom, sat down in his chair and asked what he could play with.

He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.

4) Given the success in the playroom and his love of crafts, I cleared off and set up a craft table in his room. He’s been there drawing for an hour and a half.

Breathing treatment while sitting at his craft table.

5) Dad and I changed Patrick’s ostomy bag without help. The nurses were busy helping another kid having a much worse day when we discovered the leak. So we just dived in. It’s kind of like riding a bike. You don’t forget. Just have to learn how to work with new supplies and anatomy.

6) We got to take the sacrament. This is so important, to have a time each week to remember Christ and renew out commitment to Him. In turn, He promises that His Spirit will be with us, something we especially need right now.

Last week, things were too crazy and we didn’t get in touch with the local congregation on time. But this week, they knew about us. Two men from the ward came for a visit and to administer the sacrament. One of them was the anesthesia resident on Patrick’s case the night of his transplant. Patrick was delighted to see him again.

We also had a visit from the Relief Society (women’s organization) and Primary (children’s sunday school) presidents. They scheduled in advance, but I fell asleep helping Patrick nap and they ended up visiting with Brian alone. That was kind of a bummer. I looked forward to meeting them. I hope they come back. But they did bring a sweet little card with the primary kid’s fingerprints and names and some curriculum materials.

This will help, too. I really need to get my game together and plan some home-sunday-school for us. Patrick’s not going to be allowed to go to church for a long time and that teaching is too important to miss.. For all of us.

Anyway – Sundays slow down even in the hospital, so I thought I’d blog early. We could use the rest. Mondays are not quiet. Therapists, social workers and a whole slew of other people will be back to work tomorrow.

Transplant Day 9 and Home Away from Home

Medically, today was very uneventful. I can’t remember Patrick every being so low maintenance when in the hospital. He has his TPN that runs over 24 hours (at half the rate it was running before). He has some replacement fluids, which are about 1% of what he was needing before. Then an antiviral that goes in his IV. All the rest, his anti-rejection medications, his acid reducers, his pain medicine.. they all just go in his g-tube. Other than the pain medicine, he only has things scheduled every 12 hours. I swear I was told that medications were going to be more complicated than this. We must not be to final doses yet or something.

Anyway, the team came around this morning and so far, he’s still doing great. They left his g-tube clamped all day, instead of to drain. And that was ok (for the first time in ever.) They also wrote orders for Patrick to start taking clear liquids. He was so excited when I brought him a cup of water after days of begging for one. He even got to eat dinner with us.

Otherwise, he alternated between playing in his wagon and sleeping. He slept till 8 a.m. He took a 3 hour nap. After a week of sleep deprivation in the PICU, a nice, quiet dark room was just what he needed to finally rest. And a comfy wagon and access to lots of new toys sent as birthday presents back with Brian were just the right incentive to walk from his bed and sit up just a little more for a while.

Have I mentioned that Patrick has me read and then studies carefully every single card we receive. And thanks to all the cards, banners and gifts, his hospital room already looks quite homey and comfortable.

For Brian and myself, today was moving day. We checked out of the room we’ve been staying in on hospital property and moved to the Ronald McDonald House. Even though it’s a bit farther from the hospital, walking in felt just like home.

After moving our luggage upstairs, we made a stop at a grocery store. I have never bought so much pre-prepared food in my life. However, it just make so much more sense to do this than to keep paying crazy high prices to eat in the hospital’s cafeteria. What we spent today would have covered maybe 3 or 4 meals at cafeteria prices. We’ve got a fridge in Patrick’s hospital room and there’s a mini kitchen on the unit, so it is easy to keep food there.

I was also very excited to discover that the grocery store closest to the hospital happens to have a moderately sized allergy friendly food section, including some of Patrick’s favorite safe foods.

And, well, that’s it. Brian is taking the night at the hospital tonight. I’ve come back to the Ronald McDonald House to unpack, do some laundry and have a night off. Patrick is so happy to have his Daddy back. So am I.