We're at Children's now. We've been kicked out while he gets his TEE. The experience here so far has gotten my irish up a notch. We're dealing with a fussy, over-tired, hungry baby and have had all the fun of saying the same thing fifty-eight times since this is a teaching hospital. Real fun. He especially enjoyed mommy being distracted and not be able to attend to him fully. Not. They have all been told of his anxiety over medical personnel. He's even a little freaked out by Greg right now. He senses Greg's worry and is very difficult to console. I finally got him to sleep a little after 3 I guess and had him laying peacefully in the bed. This was quite a feat. They come in to start the procedure and are prepping, etc. and I repeat that it would be best to get some sedation on board before doing anything to him or "going at him" with any equipment. I remind them that he is just sleeping and not sedated. I am assured that this will be the case and then sure enough, somebody orders the Respiratory therapist to shove a nasal cannula in his nose! He immediately awakens and starts getting hysterical. There was some debate about what to give him and when. One lady who I don't want to ever come near my son again kept wanting to wait and the fellow kept saying give him something. It was ridiculous. Meanwhile, his little mental issue with hospitals is exploding. They ended up having to give him three drugs before he would settle down and sleep. Greg said earlier that he was to be given a general anesthesia. That was not the case. He was given versed and fentanyl which he "laughed at" according to them. The brought a full dose of something bigger (can't remember right now) on board and he immediately de-satted down to 80! This is a kid who never goes below 97. The lady I don't like wants the cannula placed at that time to help him out and the nurse hadn't yet noticed him desatting so she said she wanted to give him a minute to get fully asleep. That's when the fellow urgently said to get the mask and mask him. Slowly he climbed back up. It was the scariest, most disorganized, lack of communication cluster I have ever witnessed. It took awhile for me to calm down.
Dr. Van Hare just came out to talk to us and we went back to see our boy. Dr. Van Hare is very close with Dr. Bromberg and has been here for 9 months. He spent 10 years at Stanford working with Dr. Hanley and is very good. Those that work with the elite guys are good. That helps. He is also an electrophysiologist so he would be involved even if he weren't the cardiologist on call, like he is this weekend. Everything went well and they did the TEE. No clots were visible. He tried to convert him like Dr. Bromberg did, also unsuccessful. Then he went ahead with the cardioversion (shock) and it took on the first try. He changed the settings on his pacer and if he goes into flutter again it should pick it up right away. There is some talk and some debate about what to watch for when we leave, but they are thinking they want to watch his LV function over the next couple of days and then hopefully go home to fully recover. Most, not all, people who are in chronic Atrial Flutter, like Connie, fully regain ventricular function. That is our hope and our goal. We also have to look at controlling the flutter and it's recurrence. Dr. Van Hare said that, while it would be difficult, he thinks Connie actually needs an ablation done. This is the procedure that is done in the cath lab where they go in the leg and find and destroy the electrical circuits that are causing the flutter. Dr. Bromberg had told us that this would be better to do when Connie was 8 or 9, that it is next to impossible to do it in very small hearts. We'll wait and see what the frequency will be for this to recur and go from there. Dr. Van Hare said that there is some promising stuff going on here at Wash U where they are using magnets to guide the catheter to where they need it, but he hasn't actually done one on a kid who's had a Senning or a Mustard. Senning is the name for part of the surgery that Connie had and the reason that he has this complication called Atrial Flutter.
So, now we are waiting for Bon Bon to wake up. He'll be groggy for awhile. Then we'll want to start backing off the milrinone soon and see how he does, keeping an eye on the function. Then we'll tweak meds and come home in a few days probably. It could take two weeks to two months (knowing Connie maybe even longer) for him to fully recover his heart function, that is, the ability his heart has to squeeze.
At Children's, they don't allow phones in the CVICU and no computer access either. One parent is allowed to stay bedside overnight and one in the parent lounge. Greg will probably go let the dog out and get some stuff and then come back tonight. We'll try to update again after Connie is awake to let you know how he's handling all this. He's been so brave. The updates and phone calls can only be made if two of us are here and one can stay with him while one goes out to update. So just know that we want to keep you all informed on the latest, but it is difficult right now. We don't want to leave him. They are very strict on visitation policies here so for now we'll have to keep everyone updated via email/phone.
Thanks for the prayers. The big picture and blessing is that God is working to heal Connie's heart. The frustration and communication problems are pretty small in comparison.