Day +4, +5, and +6

I accidentally left my laptop at home and can't upload the pictures I've taken over the last few days with my camera, I only had this picture on my phone. I know it looks pathetic, but it pretty much sums up how Nate is feeling...like poop. He actually is trying to smile for Daddy in this picture. His mouth just hurts too much to smile well and his fever is too high to open his eyes much. My poor punkin'.

The last three days have brought a constant fever that does not fear Tylenol. His temperature has ranged from 101 degrees to 105 degrees almost constantly since Sunday night. Tylenol helps to bring it down a bit, but never really breaks it. The fever (and pain) causes his heart to constantly race. The lowest we have seen his heart rate in the last few days is in the 160's (normal is 70 to 110), but he is frequently running heart rates in the 180 to 190 range and even over 200. This makes him feel pretty yucky and exhausted.

The mucositis has gotten pretty bad. His mouth is sore, his saliva is thick and he has a little skin breakdown on his bottom. A scan today showed that his esophagus is pretty swollen and damaged from the sores. They are increasing the medication he is getting to help protect and heal his stomach and esophagus. His damaged esophagus could be a problem when it comes time to start eating again but we'll cross that bridge when we come to it. He is still sucking his pacifier (or at least holding it in his mouth) but he has stopped wanting to drink because putting anything in his mouth makes him throw up thick spit and blood.

All of his cultures are still negative, but he is on 4 antibiotics, an antifungal and an antiviral just to make sure they aren't missing any hiding bugs. The scan today showed a possible area of infection in his lung (the antibiotics will help with that) or it could be from inactivity (we are trying to get him up and blowing bubbles to help strengthen his lung). The scan also showed congested sinuses. They don't really think any of these things are the cause for the fevers (it is probably just due to his low counts), but everything is being covered by the antibiotics. As soon as he is fever free for 24 hours, they will start peeling away antibiotics.

Nate is on constant anti nausea medication, every 2 hours (two of which cause sleepiness), but I doubt the throwing up he is doing is really from nausea. His saliva is thick and gross, I think it sits in his stomach or esophagus for awhile and then just needs to come out. The throwing up is my least favorite part of this (I think it's Nate's too) because it is truly painful for him and I don't like seeing the blood that comes up with it. They are keeping his platelet levels fairly high because of the bleeding and damage in his esophagus, so he is getting platelet transfusions every day. On a side note...they had trouble getting his platelets the other day because the blood bank was out. So, go donate your platelets if you can, there are kids (and adults) waiting for them. He has also had a couple blood transfusions.

Nate has a morphine pump with a constant drip and a button to push if he needs a boost. He has done so well and doesn't seem to be in much pain, except for the throwing up. We really haven't had to push his button much. He is SUCH a tough cookie! Most people I know whine more when they have a cold than Nate has through this whole process. He's mostly been sleeping off and on, waking up every once in awhile to say something cute. I think I have to be careful or one of the doctors or nurses might just take him home, they love him so much.

This all probably sounds pretty bad...and it is...it sucks watching your baby go through this. We are all doing ok though. This is all to be expected and really is going much smoother than we really expected. Really, it could be much, much worse and more complicated. We are very happy and grateful that Nate's transplant process is pretty "text book" at this point.

Nate had a pretty good day. His blood work showed 6 white blood cells this morning. It's not much, but it means that those little cells are starting to do something. Come on super cells, GROW! The doctor thinks that Nate will start feeling better around Sunday. After hearing about Nate's lung today I decided we needed to get him up a bit. I hated to do it because I would just want to sleep too, if I felt like he does...but it had to be done. I had him sitting up and blowing and popping bubbles. We played some games, read some books with his Tag Jr. pen and painted a rock. Then the physical therapist came in and we actually had him walking around the room, bending and climbing...without any whining and crying. Such a strong boy!

I had kind of a rough day. Last night I found out that a little boy named Ben, who we see around the clinic and the hospital, passed away after fighting a very rare cancer for several years. Then, I woke this morning to the news that RJ also lost his fight last night. These were the first babies that I "knew" who have passed away since Nate was diagnosed. It hit me pretty hard. It's just too much. I haven't even written anything to RJ's parents yet. I don't know what to say. I'm sorry just doesn't cut it. I know there are no words that will comfort them right now. I pray that God gives Ben and RJ's family a peace that surpasses all understanding.