The past couple of days and nights have been a little rough. Jack is having some serious acid reflux as a result of GERD. This, unfortunately is one of the many diagnoses that follow CDH. It has been keeping him up at night (and us as well) and keeping him fussy during the day. He is now refusing to eat anything orally and is relying completely on continuous feeds into his gastric feeding tube. I have been in contact with the High Risk Clinic at Children’s Hospital who is responsible for Jack’s general care until he is healthy enough to rely on a pediatrician. Side note: I hate that last sentence. But then, there are a lot of things I hate as a result of CDH.
The solution to Jack’s reflux is to increase his Prevacid by 100%, which at first I thought seemed like a large increase until I realized that most 5 months olds are not prescribed Prevacid, therefore making this an unusual circumstance from the start. It’s been a full day on the new, increased dose but he is still refusing bottles. I’m at a loss. Every time I offer him a bottle, I put the nipple in his mouth and he just looks forward, with a lack of focus and lets the milk drip into his mouth. He does not swallow but lets it dribble out the side of his mouth when I remove the bottle. There is no effort, no desire to drink. I just don’t know what to try anymore. But I know I can’t give up. He will eventually have to start eating orally, and I would be doing him a serious disservice if I didn’t help him develop. So I have to get past the fact that I feel completely out of control, defeated and depressed. I have to keep myself from getting angry at Jack’s lack of effort and at God for putting us in this situation. I have to ask, “Why us, why now” another day. I have to put my faith back in God, back in Jack and back in my patience and try again tomorrow.
And just if you were wondering, Matt is being very calm and patient about all this. I am jealous. I wish I had half the confidence that he has sometimes. My biggest fear right now is that I will not be able to fill the void with parenting that CDH has caused and Jack will suffer, even the slightest. But Matt continues to work with Jack and never shows any frustration in his progress to develop. I’m glad that I have Matt to lean on and help me collect my thoughts to regroup.
There is some good news at the end of this sad rant of mine though. After all the difficulty that Jack has been through with CDH, GERD, chronic lung disease, complete tracheal rings, perforated bowel and obstruction (twice), collapsed left lung (I could go on all night), Jack is kicking A-S-S on his oxygen requirements. We are working with him having windows off his oxygen which should be about 1-2 hours as long as his oxygen saturation does not drop below 95%. He was off his oxygen for 5 hours today and didn’t drop below 97%! Now, this has happened quite a few times in the past week and a half but today, it was extra special. I needed this little something to cheer me up and give me just a little more momentum for tomorrow. So…wait no further. Feast your eyes on a couple photos of Jack enjoying some time with room air.
What a beautifully naked face. He’s sleeping now, so I hope this will get him back to sleeping through the night. Cross your fingers.