Immune suppression and illness – Page 3

Transplant day 86 and Sick, sick, sick

Well, I think it would be safe to say that the past 48 hours have been among the hardest we have been through. Friday, Patrick seemed to be feeling better. Well, except that he still had very frequent, black diarrhea (sorry, remember, blogging about intestines here, remember.) The team explained that bleeding in the GI tract wasn’t unexpected in an immune suppressed patient wasn’t entirely unexpected for an immune suppressed patient with Norwalk, a.k.a. norovirus.

Otherwise, Patrick was happy and playing all day. However, as the day went on, I started to feel worse and worse. I made a bit mistake by eating a great big, yummy burrito for dinner. About half an hour later my body told me that, yup, that tender tummy feeling meant that I had caught what Patrick has. Not a big surprise, given just how often Patrick had gotten sick while I was holding him the day before.

Well, my sweet husband saw that I was looking worse and worse and, even though he was also starting to realize he was sick, sent me back to the Ronald McDonald house for the night. Good thing, too.. I am sure I wouldn’t have been able to take care of Patrick at all that night. I was SO sick! But, on the way home, I stopped at the store and picked up medicines and gatorade and I spent the night trying to pull myself together enough to be mommy again in the morning.

And, amazingly, by morning even though I felt very weak, I was doing well enough to go back.

It sounds like Brian and Patrick had a pretty rough night.. changing diapers every couple of hours. When I came in, Patrick was laying on the couch and looking quite pale, but happy. I sat down next to him and asked him how he felt. He said he was ok, but I’d check again every few minutes. Then his nurse gave him his morning medications. I asked how he felt, Patrick said, “sick!” and then started throwing up blood.

We put his g-tube to drain so he wouldn’t throw up anymore.. but that kind of seemed to be the kick off for a rough day. Not long afterwards, he started to act as though his belly hurt. That got worse and worse throughout the day. (We think it was stomach cramps and maybe gas.) But at its worst moment, Patrick was screaming in pain, curled up in a ball, and not willing to be touched.

Finally, they got some pain medicine to stay down and he fell asleep, which made a difference.

Because of the bleeding, they decided to give him a transfusion. Those run over several hours and we let him rest while it was running. His color started to come back. For most of the day, Brian and I took turns laying in bed with him holding his hand and helping place stethescopes and thermometers so he trusted they wouldn’t hurt him. (This was a good way for sick mommy and daddy to rest, too.)

Meanwhile, we sipped gatorade and slowly started to eat again.

Then, once the transfusion was done, we made him get out of bed to be weighed. I hate doing this: making him get up and move when he’s in pain. He just clings to my neck and begs me not to hurt him. But moving helped his body reset a bit and over the next couple of hours, his pain started to improve.

By evening, Brian told Patrick we needed him to get up and walk again. We got him out of bed and he sat on the couch playing with toys until almost 10.

And last night, he slept peacefully all night. That was amazing. We ALL needed the rest.

I am feeling 80% better this morning. Patrick’s pain seems to be gone, though he is really guarded.

The plan discussed with the team yesterday was to take him down for an endoscopy today if the bleeding hadn’t stopped. Patrick’s diarrhea has slowed. But his g-tube has been to downdrain and there is still blood there and in his occasional diaper, so I’m assuming that is still going to happen. I know he was put on the schedule yesterday because someone from anesthesiology already came to talk to us.

I am trying to find the right way to break this news to Patrick. I’m sure he’s terrified of anesthesia here because it has always ended in surgery. Not sure I can explain to convince him otherwise.

But I hope we can find some answers that will help him finish getting better. We knew taking down Patrick ostomy meant more endoscopies and so this is going to be a part of his new routine.

I hope that all of us being sick together in the hospital doesn’t become routine. Sure, it’s nice that we can pick up a phone and order food and the nurses really have been kind to all of us. And, since he’s in isolation, we at least aren’t putting anyone else at risk visiting here. (In fact, it’s probably better than hanging out at the Ronald McDonald House). BUT I don’t want this to be the precedent for the new normal in illness after immune suppression.

We know illness is going to hit him hard every time and be hard to shake. But hopefully the next one doesn’t take down the whole family. Right now, we really hate Norwalk.

Transplant Day 84 and norovirus

Let me preface this blog post with a warning. You are reading a blog about intestines. Intestines make poop. Also, when intestines get sick, all kinds of bad things happen. Patrick got sick today. And we have blog followers who have enough medical need-to-know that I will be writing about yucky poopy things. If you don’t want to read about yucky poopy things, then know that Patrick was admitted to the hospital today with norovirus, an intestinal virus, that has made him very sick and with his compromised immune system is dangerous. We don’t know what this means for him or how long we will be here, but he is feeling yucky and scared, but so far ok.

Now, disclaimer done. Here is how today went. Patrick went to bed happy last night. In fact, so happy that he laid in bed and tried to learn about rhyming words with me for an hour. He was still sleeping well at 2:30 when I refilled his formula. But at 5:30, when he woke up, he sounded pretty unhappy. This is a usual time for him to request me to come lay with him. So I went and laid down with him and he slept until 6:30 when he started doing all kind of things that he knows hurt me and wake me up.

I am a slow learner and forget that this behavior means that Patrick is trying to get attention because something is wrong. He was obviously was exhausted, as we all were, so I kept trying to get him to sleep and he would for a few minutes at a time before pulling my hair or pinching my fingers or banging his hand down on my face again.

At 7:15 I decided that we weren’t going to get enough sleep if I got him back to sleep, given it was lab day, so I got out of bed. Something about Patrick’s smell made me think he needed to be cleaned up. So I took him immediately to shower, much to his displeasure.

Well, he wouldn’t stand up straight. Just kept leaning on everything and was very whiny and then, as I took off his diaper, I noticed that he was acting queasy and that his belly looked kind of round. I poked. It was hard.

So I grabbed a diaper and I told him I thought he needed to poop. He did. And he went and he went and in seconds the diaper was full and his legs were wet and, given that Patrick’s stool has been solid or at least mushy for weeks, I knew something was wrong.

But now he really needed a shower. And a shower actually seemed to make him feel better. Brian and I talked and decided that maybe Patrick had eaten something he was allergic to the night before, as he’d been in the mood to try all kinds of new foods.

So we got him dressed and watching TV on his bed and we cleaned up the room and got dressed. And at 8:30 his nurse came and he seemed fine.. But then we made him sit up so she could listen to his heart. And he threw up all over both of us.

She managed to get labs drawn, but by the time she left, we could tell that Patrick was more than just a little bit sick. So, I called and left a message for the team and we stripped the bed and started some laundry and got permission to eat in our room.

Finally, around 10, the nurse coordinator called me back and asked me what our instinct was. I told her it seemed like a virus. But that I didn’t know what that meant we should do. She consulted with the nurse practitioner who calls the shots, and then called back to say that they wanted him to come in.

Checking in wasn’t easy. Even years after our zip code was changed, the computer system here seems to hate our new zip code. It took over half an hour to get Patrick registered and meanwhile he had to go again, and made quite the puddle in both of our laps when his diaper leaked.. and he was trying his best not to throw up. And finally the woman at the desk called it good enough and brought us upstairs while Brian stayed to try to sort out the registration.

They did a full workup when we came in with cultures and viral panels and stool cultures. We just heard back that Patrick has norovirus. This is a pretty common and contagious stomach virus that, for many people, would cause an upset stomach for a day or two. It has a reputation for floating around the Ronald McDonald House.

For Patrick, on immune suppressants and with a brand new intestine, we don’t know what it will mean. For today, it means smelly liquid stool and nausea and a low-grade fever. He has spent the day laying in bed.. sleeping some. Whining a lot. Begging for water. And lying and saying that he is “all better” and “I feel great.” He’s on IV fluids and not allowed to eat or drink. Once he got an IV bolus of fluid, he started looking and feeling better. He is arguing over everything and saying “ow” or “stop that” over the slightest touches. (Not sure they hurt. He may just be defensive.) I think he’s finally past the initial anxiety of the hospital admission.

So the plan for now is to wait. There is no treatment for norovirus. Just need to make sure that he stays hydrated, that he absorbs his prograf properly, and that they watch for inflammation that might put his graft at risk. He’ll stay in the hospital, in isolation, until this virus passes.

The hospital is very full. We are in the last room, a tiny, outdated, smelly room with construction going on just the other side of the wall. This could be a long wait. But at least we have a room.

We are bummed that another daddy visit is being spent in the hospital.

I’m a little bit worried, knowing how contagious this bug is and just how many changes of clothes we’ve been through, that I am going to catch this and then I wonder just who will take care of Patrick if I can’t.

But only time will tell. We appreciate your ongoing prayers. We know that miracles are wrought by prayer. We have seen it over and over again in the past few months. So please keep those prayers coming.

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.