Tag Archives: bad days

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 4

IMG_20141103_114027 IMG_20141103_164934Today was a hard day for Patrick. It seemed to start out ok. His nurse overnight did a great job keeping him comfortable. At 6 he was well rested and talkative, though a little sad. His nose was itchy and when he rubbed it, the cannula in his nose rubbed just enough to make it bleed.  His oxygen saturation was low, so we had to suction his nose, too, which is pretty awful for him. But, with Daddy cuddling, all was good for a few hours. Until they wanted him up to walk. That hurt.

When he got to the chair (about 2 feet away), he was sore and tired, but in good enough spirits that he dared work himself down into his favorite snuggly sleep position. That’s when the trouble started. Snuggling down made his oxygen saturation dip even lower. Soon, his nurse came back to suction his nose, really thoroughly this time. He was hysterical.  And, it didn’t help.

So they decided to call for a chest x-ray and his nurse had him walk back to his bed for it. He was already sore from fighting the suction and walking was agony.  But when he was done walking, he still had to sit up straight on the bed and have an x-ray taken. And I had to step out of the room while they did it.

Unfortunately, that x-ray showed that Patrick has gunk in his lungs and fluid buildup around his lungs. (They run a ton of extra fluid in the first couple of days after a transplant to make sure the veins stay open and happy so the graft will take… All that fluid has been just sitting in Patrick’s tissues and he was rather plump and sore this morning.)

They’d already started him on a medication to help him get rid of the fluid. They decided to order some medicine to help him cough. Patrick is refusing to cough. So they gave something IV and then brought a mask to administer a breathing treatment with.

That was the end. Patrick didn’t want a mask on his face. (I’m sure he’s seen enough of them in the OR.) He toughed it out the first few 10 second tries I did for him… But then he decided to fight… And when I tried to help hold him because he was fighting… Well, he lost it. Kicking, screaming, squirming, fighting with all his strength. This is amazing considering how little strength he has. But it surely left him worn out.

The breathing treatment didn’t work. They had to increase his oxygen several times to get things stable. Patrick was spent. He just sat there, not moving, not talking. I finally told the doctor that this wasn’t like him. We were going backward if he’d lost his words again.

They listened. They let him rest. They added some pain medications. They ordered a different kind of breathing treatment that just gently massages his sides to break up the junk in his lungs. And he has done better. He’s seeming calm. He’s slept a bit. His vital signs look a little bit better. And I’ve learned my lesson about letting them push him. Patrick is not one to be pushed.  Challenged, yes.. But not compelled. I won’t let tomorrow go this way.

The hardest thing about the day is how just plain sad Patrick was. Because it was Monday, we had a parade of people in and out all day introducing themselves: social work, ostomy team. nurse coordinators, child life, and on, and on. And all the while Patrick just sat there looking like he wanted to cry but with a firm determination he wasn’t going to cry in front of anyone. And anytime I tried to talk to him about it, either his oxygen saturation would drop or someone new would come in.

He’s figured out he has an ostomy. (Where the intestine is brought outside the abdomen in one spot and drains into a bag.) He needs this so they can monitor for rejection for a year. I’m sure he’s confused. But anytime I’d try to help explain, there was one more person. Always trying to cheer him up. Some days, you don’t want to be cheered up. Some days you need to cry.

I think the treatment plan is better now. I’ll spend the night in the room tonight to keep an eye on things and to help him feel comforted. Tomorrow is another day. (And hopefully a good one, as tomorrow Brian goes home to get what Patrick and I need to stay here for a while and I’m gonna be on my own.)

We did have some good things in the day. Brian made it to Walmart which means we have food and socks (only I packed socks in the hurry to leave) and slippers for Patrick and some other needs. We got a lot of answers to questions we’ve had from the people who came by and called.  I got time to get some of the e-mails and phone calls taken care of to tie up loose ends at home.

And in a very special bright spot, Patrick received 35 e-cards today. How amazing it was to read words of encouragement and support from friends and family and also from people we have never before met. I’ll admit, that is what got me through the moment today when my heart was breaking.

Thank you. Thank you!