Thursday, September 26, 2013
The good and the bad
First the good:
To me Jude's cough sounds much better and his stats look awesome to me. He isn't needing any supplemental oxygen and his heart rate has come way down. The nurse also said she feels like his air movement is a bit better. This area all very positive signs to me!
The not so good:
Jude had a bad morning. About 5am he began throwing up again without anything to prompt the throw up like a startle, wake up, or seizure. Unfortunately, he was really struggling and his pulse ox dropped. I figured he had a mechanical obstruction so the nurse called in the charge nurse and we all got him back to normal. While standing up with Jude I said, "Oh my what happened to his color?". It was even worse than it was before and then his eyes began rolling back into his head. So the nurse called the doctor to update him. Since Jude's stats look good the doctor figured what I had felt that Jude is just well............really sick. However, the doctor did notice his stomach was distended and ordered a abdominal X ray and a chest sonogram. He wants to insure that the fluid in the chest wall from the pleural effusion (do not Google this term..trust me) is not building up so much that it's backing into other organs. This would require surgery for a chest tube to drain fluid. I believe it's just gas from all the medications, etc. The nurse didn't feel Jude was stable enough to transport him down for the X ray so they did it in the room. Sure enough it showed a lot of gas. However, they haven't done the chest sonogram yet. This will not only tell us about the fluid but also tell us how dense of an infection we are dealing with.
Jude has been sleeping on and off since about 6pm yesterday. He pretty much just stays asleep, but the nurse said that's very good for him. We all know our body heals and resets when we are sleeping. Jude spiked another high fever early this morning so the doctor has prescribed Motrin and Tylenol be alternated every three hours. If they can keep Jude comfortable I am sure his body can fight better. He is still in a regular isolation room and has avoided PICU. They are relying on us as his parents to point out any marked changes we see that they don't catch. However, they have been very good about picking up on everything including his color change. The doctor did say that in his past experience with an illness this severe he has seen a hospital stay of several weeks. I may be calling on a few family members to sit with Jude during the day when he is stable enough so we can go to work.
I got a call today from Ragan's Hope http://raganshope.org/. Which is ironic because Emily JUST volunteered to work their event with Night of Superstars last week. They offered to help us in anyway they can and to bring a meal. Man they must be life savers for people that have long extended hospital stays with children with chronic illnesses. I told her that being in the hospital is like a vacation it's all the cost but none of the fun. She said that's a great way to describe it. She asked about Emily's Smile Boxes and I explained what Emily's charity was about. I also began to think that it sure would be great if at some point we could pass out Visa/MasterCard gift cards for parents of the children in hospitals. The Dallas Cowboys called about helping Emily's Smile Boxes (although I can't seem to reach them back) but maybe this is something they can help with. They would have the resources to create a card that would also feature their logo and their show to give back to the community. We could include them when we drop off boxes. Just a thought for the good ole Dallas Cowboys (lol)!