Things are going fairly well here. I don’t have any new photos (no time) but I thought I’d pop in here and try to answer some questions and update all of you. Next I’ll answer the questions that have come up in the comments. Be sure and check them if you asked a question there.
* Pain seems completely under control. Apollo is just taking Tylenol now. He only took it once yesterday, though I wish I would have forced some on him before bed because he was very restless.
* Apollo is no longer thrashing around in his sleep and hyperextending his neck. This is HUGE! It gives me hope for some future sleep for both of us. He breathing also seems calm and regular when he sleeps.
* Apollo has only choked on food twice since surgery. This is another huge answer to prayer. Prior to surgery he was choking at every meal. You probably remember me mentioning when he choked back in December and we had to call 911…
* My in-laws are here and are helping me get things back in order around here. Thank you Jean and Sandy!
* Apollo has so much anxiety now. It’s almost like having a different child. He has had to be rocked to sleep at nap time since his MRI in January…now he has to be held the entire time. Yesterday was the first time I was able to put him down during a nap. Bedtime is a nightmare. He starts getting upset as soon as he sees the other kids getting on jammies, brushing their teeth, etc. He is not fighting sleep, per se, but is scared of bedtime. He will not settle down or go to sleep until both Chuck and I are in bed with him.
* Apollo has been getting very out of breath when playing or crying. I’d say that part is as bad as it’s ever been. A few times he’s gotten so out of breath he’s breathing in with a little “gasp” at the beginning of each breath. He has had several nights of retracting when we go to bed. The nurse from the hospital said it may be that it is painful to take a deep breath, so he’s gasping to compensate. I know it is too soon for the stridor to be gone, but I wish he weren’t still getting so out of breath. He goes to see our family doctor tomorrow for a post-hospital follow-up.
* Apollo is now refusing to take any medicine….not good when he’s in pain and takes reflux meds twice a day. He is obviously reacting to the trauma…I’m wondering of they have “toddler therapy” for kids like him…
* Apollo still has very little interest in food. He ate so well that first meal at the hospital (he must have been starving) but has not been eating much at home. For instance, today he’s eaten half a rice cake with peanut butter…
* Apollo’s voice is different…more high pitched. I am guess that we are hearing his “real” voice for the first time. We know he has damage to his voice box from the reflux and his body has formed nodules on them. I think the difference we are hearing now is because it is no longer being compressed.
* Apollo has three follow-up visits in Seattle on March 20. He sees the pulmonologist, the cardiologist and a dietician. I am very interested to hear what the pulmonologist thinks of his airway now…if he things the obstruction is gone or there is less narrowing in his airway.
* I don’t think there will be much in the way of the cardiologist in years to come. I believe they consider his heart repaired now. It is fully functional (thank God). I think he will probably have annual visits, but I don’t anticipate more than that.
* I do think a pulmonologist will be a part of his life for many years to come…or at least until his airway is declared “normal”…which it may never be.