Tummy Troubles

As I’m writing this blog, one of the tiny little babies down the hall is being worked on by the paramedics because he’s having trouble breathing. More trouble than what the respiratory therapists can take care of. And the baby we room with stopped breathing about 10 minutes ago. The nurse was able to revive him but she said she thinks it’s going to be “one of those nights.” It’s very quiet right now in the halls because all of the nurses are in that tiny baby's room. I hope everything is okay. It’s scary stuff.

Christian is doing really well. Well, let me backtrack…he did throw up quite a bit last night. It’s not a violent throw up, in fact, I would liken it to a heavy spit up. So I had a rather sleepless night. He was agitated by something, his heart rate was fast and his stomach probably hurt from these near continuous feedings they keep prescribing for him. I finally told the nurse, after cleaning up his bed three or four times, just to hold his next feeding so he could have a rest. And, waddya know, he felt better and stopped throwing up. Mama was still tired all morning, though. Christian was tired, too.

It was Christian’s first trip to the therapy room. This room has all the fancy tools that will help him get back into action. They usually do therapy in his room, but there is a lot more in the therapy room they can work with. The only thing was that Christian was tired from the throwing up and lack of sleep at night, so he just wanted to sleep.

The therapists have been talking to me about allowing him to go in the pool for water therapy. They were really careful about asking me in light of the accident. But I told them I think it’s a good idea. Christian loved the water and he wasn’t ever afraid of a single drop of it. Salt water, pool water, bath water, he loved it all. So if going to the water awakens any kind of sensations or memory tied to his love for water, I say go for it. It might be hard to watch and I don’t know what kind of emotions it might bring out but, man, that kid had so much joy when he was splashing and kicking in the pool. And that’s what I have to hold on to. Christian will have his water therapy next Wednesday.

I also met Christian’s “doctor” today. Yup, I don’t like him, just as I suspected. I asked him about adjusting his feedings gradually and I won’t go into all the boring details of milliliters and the like but whatever I suggested, he basically told me no. Wait, not basically, he told me NO. He said my suggestion wouldn’t give him enough calories to put on weight. Um, have you looked at the kid, doc? He looks like a two year old. I highly doubt loosing a few ounces at most over a trial of a few days is going to leave him lacking in nutrition. He also suggested fundoplication if Christian can’t tolerate feedings. This is when they surgically tighten the top of the stomach to prevent acid reflux and throwing up. That would have been fine and dandy had they given him this procedure when they gave him the other surgical procedures. But now to have him have ANOTHER surgical procedure because you don’t want to bother with taking the time to figure out what’s going to settle with Christian is unacceptable. I’ll control the feedings without the doctor knowing if I have to…tell me no.

Christian had another round of HBOT today. It went well, he did great in the van ride over again! While on our excursions, we put a little tube on his trach. It looks like a bow tie and keeps his air humidified and also always allows an open airway, even if his head falls forward on top of it. Well, while in the chamber today, Christian got a little “snorkely” and would normally need to be suctioned. But, instead, he coughed so hard he blew the “bow tie” right off his trach! I have a feeling the trach won’t be around for too long.

The speech therapist was really happy with Christian’s progress, as well. She even remarked that he looked so much better than Friday, which is when she last saw him. She gave me some exercises to do with his lips and mouth. I asked her about allowing different flavors on his tongue, as suggested by a friend of mine, Rochelle, who went through the same thing with her daughter. She said to try a little flavored toothpaste for now just to wake up those senses.

I think back at all the things that we were told by the doctors and nurses. Things like, “He may not ever come off the vent.” And a few days later he was off the vent. Christian is capable of so many things it blows my mind. It’s like he heard what the doctors were saying and he decided that he would personally make sure he would meet their challenges. So he’s heard them say he may never eat by mouth and his sucking and swallowing are getting stronger and more frequent every day. He heard them say he had no cough and he’s coughing hard enough to blow things off of or out of his trach. I know he’s going to keep going. He is such an amazing little boy.

Oh yeah, the tiny baby down the hall is okay and so is the baby we room with. Just thought I’d let you guys know.