Joshua has had a real mix of good days and bad days lately. Last Saturday he had a GREAT day! Brooke was here and was playing with him. He was laughing, smiling and even sitting up (with her help of course). I knew that she was here that morning so I chose to sleep in and missed a lot of the fun but she filled me in on the details. :-) What was super great was that the doctor's got to see him be happy and smiley.
We don't know what caused what but we do know that over the course of a day or so he had bad diarrhea and was SO irritable! He ended up a little dehydrated with elevated sodium...again. He was awake whimpering and waving his hands around for most of about 32 hours. :-( No amount of drugs seemed to help and was SO SO SO unhappy. (For the record: over the course of the days previous he had his Ativan changed from IV to PO, a fever of 104 and was also getting some more teeth!) Then he finally fell asleep and slept for a few days straight. Mean while we had to hold his diuretics because it is dangerous to bring the sodium levels down too fast. He retained a ton of fluid and required some additional help. Yesterday we had to put him back on the ventilator. He immediately started to look a little better and his heart rate has been very good in the low 100's - 120. When they went to intubate him Johnna looked quite 'puzzled' as she was obviously working something out in her head. She mumbled 'no' after asking for suction and then asked for a Kleenex. Then she just shook her head again and reached into the back of his throat. She pulled out a large marble sized ball of mucous! EEEWWWW!!! No wonder he was having some issues breathing and had a little lower sats. It also helps explain the weird croaky cry he had developed. And did I say EEEWWW. Becky proceeded later in the day to get another large gob out, even though it wasn't as impressive as Johnna's!
He also had to have 2 bi-lateral chest tubes placed (again) to remove the fluid that developed in his pleural space. IR came into the room and did them again under ultrasound.
On Tuesday IR was also in here and they drained 15 cc's of blood from his hematoma. It is smaller now and even softer. It doesn't appear to be infected but does have a large clot it in.
He had an echo on Monday and his heart function appears to be the same. The clot was a little lighter in color so maybe it is maturing.
He will be going into the cath lab here in the next hour to have a biopsy done to check for rejection and to have his PA's and SVC checked out. The thought is that maybe they need ballooned or stinted so that he can get optimal blood flow through them. This should improve his heart function.
Oh, we also changed rooms the other day. We are now in 4273-1. His room mate is the cutest little gal EVER! He is sharing a room with Miss Karlee! It has been nice to finally get to know her mom Devon. Although, after a little mix up with the UC desk and her having to sit in the waiting room for 20 minutes....she may not think the same! :-( UGH.
Here are some pics from this last week.
Sporting his bipap mask
This is his hematoma (outlined with a Sharpie!)
And this was taken a little while ago before he fell asleep.