Thursday (14 months and one day old!)

So this is going to be a fill you in...mommy reminder...kind of post.

Friday~ Cath lab: They ballooned his right SVC and right PA and his left PA. He didn't get back from the cath lab until 10:30 pm! Dr Johnston is so awesome! He knew it would be a late night but was happy that it was someone that he knew so well. :) They also did a biopsy, (which later was said to be fine)

Saturday~ The came off the ventilator and was doing super! He was put on bi-pap that night just because we didn't have a definite plan. He looked great. Dr Law commented that all the hard work that he has done for months and Dr Johnston can make major improvements in less than hour! ;-)

Sunday~ Decided he really didn't need bi-pap but could go on at night for a while. He was off all day and looking good.

Monday~ Required bi-pap most of the day. Became febrile. Slept most of the day but did share a few smiles.

Tuesday~ Slept all day. Required bi-pap all day. Maybe an hour of awake time all day. Also febrile. Jen (his nurse) stripped his right chest tube and it drained a TON. It had stopped for a couple days. Wound Vac dressing was changed and they found out that the base of his incision is open and tunnels to the other wounds. (It has now been decided that the surgeons may want to take him back to the OR and look to make sure that there is not an area of infection somewhere in his chest wound. We are waiting for them to come and look and come up with a plan.)

Wednesday~ Was re-intubated (back on the ventilator) and was taken to IR. The left had stopped draining and they determined it was plugged. They changed out the chest tube but only got out 7 cc's. It appears that there is still an effusion for they chose to keep him on the ventilator overnight. He seemed very uncomfortable and irritable most of the day. Also febrile. Had an echo. Echo results showed that he had decreased heart function and was put back on Milrinone (@0.5). His echo scores also went up slightly. The blood clot in his left atrium and the blood clot around his cath site (power pic) are both unchanged.

Thursday~ Still on the ventilator, febrile, repeated echo and EKG. Today it was discussed that either he has some kind of infection (which we are still looking into) or low level rejection. They sent all the labs and now we wait to see what comes back and what the surgeons think. If there is no sign of infection or elevated counts that may signal infection, then they will start treating him for heart rejection. (The elevated counts from yesterdays echo could also be a sign of rejection.) They have repeated it but we haven't seen the results yet. He also had a change in his heart rhythm just a few minutes ago. Dr Baden said it kind of looked like a 'flutter'. His calcium was low and he just got that and his potassium is high so it could have been caused from either of those. We will watch it closely.

Please continue to pray for his health and that what ever presents it self can be treated easily. I don't know what the better option is. He hasn't seemed to make much progress lately.