Dear Friends,
Maybe you think this is just way too many updates and too much information, but I figure you deserve to know your prayers are being answered! Please continue to pray. Mike's valve replacement (palliative at this point until they know how to approach correcting his heart as a whole) will happen on Thursday. The procedure will not be as invasive but still carries some risk.
Here is the note I got from Brad this morning. I am sharing it because I believe in the power of prayer and you all have been so faithful. Let's pray this young man home!
In times like these, it is easy to be over-emotional, over-spiritual, and over-the-the top. I will try not to be hyperbolic.
The last 16 hours have been nothing short of a ... well ... miracle.
Talking to the PICU doctor, I now understand what was going on Tuesday morning. Tuesday morning the room was full of neurologists and cardiologists. Given Michael's CAT scan, lack of responsiveness, and then involuntary moving around, people were concerned about having to give me "the talk". They all love the boy who had been with them for two weeks, but were afraid that too little of him was left to justify putting him through another procedure. Dr. Crow was afraid that this news would have to be delivered during her watch. All the joking and chatting was replaced by those little lying smiles. You know the ones, they are smiles from the nose down, but sad eyes from the nose up. Sudden the chaplain has large amounts of time to chat with me (more sad eyes.) Michael was out from Friday night to the 7:30 Tuesday morning shift change, with little other than a few anecdotal stories of eye blinks to base any hope.
Between 10:00 AM and 2:00 PM, everything changed. Michael came back with a vengeance. First, he worked his bite block out his mouth, then he bit his breathing tube. They thought it was a seizure, but I told them he hates intubation. They restrained him and taped the bite-block in. By2:00 PM he was weak, but responsive, answering "blink" questions. Suddenly the medical staff had a viable patient again. Fortunately, they had worked all weekend on planning Mike's next heart surgery, but his condition delayed the actual preparation. His recovery sparked a second flurry of specialists. The room filled again with neurologists, cardiologists, pulmonary experts, and about everly -ologist you can imagine. Each scheduling tests immediately for "their" patient. (For example, three different Drs. scheduled three different CAT scans which needed to be combined.) Suddenly, the joking resumed, Michael slowly recovered. He used his little thick tongue to worry out the bite-block again. They made him promise not to try to bite his breathing tube if they removed the bite-block. Michael blinked in affirmation.
Over the night, Michael has continued to move. He can lift legs and arms, but is too week to write. He is well enough to be VERY uncomfortable. The pulmonary nurse had to keep resetting his ventilation. Michael kept inhaling and exhaling beyond the machine. His swimming and active life has given him good volume now that the fluid was out. (This may have also masked early lung congestion symptoms.)
What happened? Probably brain edema. Mike is now on NSAIDS, analgesics, anti-seizure (precaution), and meds to reduce edema. He kicks everything off the bed which annoys him. The brain damage may be old, and seems to include speech and language processing, which we are aware of. HE IS VERY CRABBY.
Mike is very sick, but still with us. The pulmonary valve is passable, and the aortic valve can be replaced through the artery. This is still dangerous, but there are no real alternatives. This gives Michael time to heal and all of us time to plan life-long solutions.
I so love and appreciate each and every one of you that has taken the time to think of and pray for Mike. The offers of help and words of support and encouragement have meant the world to me. For the first time in weeks I slept without waking every hour. We still have a ways to go, but our boy is back and God willing he will just get better and better.
Thanks from the bottom of my heart,
Deb