Naivety

I guess being that Philip was in such great shape going into surgery I thought his recovery would be easy simple and we'd be out the door shortly after Dan. And had some issues not arose, we probably would have come home the day after him. What made me think that we would escape any issues? Who the hell did I think I was? 

So naive...

First there was the soft rejection issue that was due to an anti rejection medicine he is on called Prograf, not being the right dose. That was quickly taken care of and so far the liver seems to be doing good. Other than that, The week following transplant was great, then At about 7-8 days post transplant, he started having black stool. Then Philip was restless through one night and woke up in a lot of pain. This is the same kid who never had to use the morphine after surgery and only used Tylenol scarcely up to this point so I knew something must be up. I was sitting in his bed facing him and giving him a drink when he started to gag and vomit everywhere. The whole day he remained lethargic, had cold sweats and was not himself at all. It was the scariest I'd ever seen him before. My mom and sister had happened to come in that day right after the vomit episode

And thank God they were with me. I was a nervous wreck. He was sent for an emergency X-Ray which looked fine and They kept checking his vitals often all day long. They did some blood work and his white blood cell count went up and his hemoglobin dropped. So they were concerned he was getting and infection being he is significantly immuno-compromised. And at the same time concerned he was bleeding in his GI tract somewhere. 

Isn't this part of why we did the surgery to avoid GI bleeds?!!!! What the hell is going on?  The doctor kept coming in overnight and checking his pulse like every hour. They started antibiotics and that seemed to help his white blood count. But they still have no reason for the infection And said the blood count could even Be a side effect of the steroids he's on. The black poop stopped and his hemoglobin went up

So I thought we were on the right track but they returned and his hemoglobin dropped again. There is talk of a transfusion or endoscopy if it continues. Poop is back to normal right now so hopefully it is resolved. They explained that around this time frame, this happens sometimes. Being that the intestines were manipulated in surgery, they are raw and can create ulcers near the connection to the liver. And these bleed sometimes. This is what they believe is happening to Philip. They also think the blood thinners he is on the hell it so there are no clots in the connections to liver is aiding the bleed. So he had to be taken off o those for the time being. They would like to avoid transfusion and endoscopy because there is always a risk of infection and an endoscopy is an invasive procedure. At the same time all this is going on his abdomen is still draining too much fluid called ascites.  He has something called  a JP drain, where a tube is inserted into his abdomen and it drain excess fluid from it. Split livers tend to give off more fluid than whole so it is not out of the ordinary but his body needs to learn to reabsorb the fluid or pee it out. He is not doing that so they are trying diuretics. Unfortunately the drain is also leaking where it is inserted into his abdomen causing quite a mess. They have to change the dressing often and it has irritated his skin so bad. They can not take the drain out or his belly will fill up with fluid and become severely distended. So we wait and hope that the fluid dissipates quickly because that is what is basically keeping us from going home at this point. As well as the hemoglobin. They will re check blood in morning. 

On the other hand, We've had some pretty amazing nurses and staff here. Everyone is so nice and helpful and wants to see Philip do well. 

Philip was eyeing up the play room today but he is not allowed in it with other children. So we were in our room and child life came by and said they cleaned the whole room just for him to have a private play session. They even put a sign on the door. It made him so happy. You could see the rest of the afternoon he was more like himself than any other day. It's going to be a huge transition home because he has become accustomed to my attention and now demands it. I basically can't speak with anyone or he keeps yelling MOMOMOMOMOMOM !!!

And if I try to answer a text or pick up my phone he has a fit. 

Anyway, I hope that one day this week we will be able to come home because if I have to drink anymore ginger ale or eat any more hospital food, I'm going to vomit!