Tracen was sick with a high fever(104*) and vomiting on Sunday and now has a rash all over his body. Of course Mad woke up this morning with a fever too. Hopefully we'll avoid making a trip to the hospital.
It is so annoying to have a max of two weeks at a time without him being sick. It is really hard to move forward with his PT, OT, and Oral Motor therapy when he is sick all the time.
Because he started up-chucking again our pediatrician reopened the discussion of getting the fundoplication surgery(it involves wrapping the stomach around the esophagus). Maddox had an appointment with a surgeon anyway to discuss a lump on his chest that appeared about two months ago and has doubled in size in that time, so I told the Pediatrician I would bring up the fundo with the surgeon as well. Thankfully the surgeon felt the same way about doing the fundo as I did. She was surprised that we hadn't tried any other reflux meds or upped his dose of the one he was on. I have brought this very thing up with our GI doc and pediatrician, but they seemed pretty set on the surgery. Last week mad had an ultrasound on his lump and an upper GI study. Everything with the GI looked fine, and though we haven't received the results from the ultrasound, the surgeon had previously told us that the lump would need to come out. I also contacted the GI doc and finally got a new reflex prescription to try. We are praying this one is more effective for poor little Maddox and keep him from needing the fundo.
The Mad-man is rolling some and working on sitting. We are also doing weight-bearing exercises for his legs and arms. Things are moving slowly, but he'll get it. He is babbling lots and laughs at his siblings regularly. He has also started giving kisses and cups our faces in his sweet little hands.
Love it. His helmet makes it hard to get close to his face, but we try to work around it and get in extra snuggle time when he is having a break from it.
We have stalled on oral feeding and are trying to let him be in charge of it and just let him play and explore instead of force feed. Right now he'll suck on baby carrots, play with a bottle, make messes in baby food with his toys and spoons and continues to love his pacifier and infadent(baby teeth cleaner). Due to the fact that he is still on continuous feeds, he never feels hungry and really has no reason to eat. Because of all the vomiting, people(docs,therapist,etc...) all feel that transitioning to bolus feeds isn't going to happen anytime soon. Catch 22.
Such is life with these little CHD kids. There are steps forward and back constantly. It seems to be the way life is for all of us.
So, we just keep on keeping on and pray that things improve and we work hard to do our part to make it happen. I tell myself that this time next year we'll be in a new place with him. Hopefully that new place will be better. Until then we'll just try to enjoy what there is to enjoy.
- Posted using BlogPress from my iPhone
One step at a time right? I am sad to hear you guys are still battling the germs at home. What a nightmare. I hope a new reflux med will help out. We actually had Grant on 2 reflux meds together and they helped a lot. I don't think that the Fundo (Nissen) is always the answer. Grant had his, but one good round of the stomach flu and his stitches loosened up enough that he can now vomit without any trouble. I was glad we did it and I think it did help with the everyday reflux, but hopefully increasing meds can held Maddox for now and keep him out of one more surgery.
ReplyDeleteAs far as stalling on oral feeds, I bet that is frustrating right now. We did a lot of work to make food fun and exciting. Does Maddox have his own fun smelling/tasting chapstick? We bought a 6 pack of Bonnebelle chapsticks and had them on Grant constantly. He would smell it (positive association for food) and lick his lips when he was playing which helped his tastbuds. You are doing so much good to help him have positive experiences and it will pay off! Hang in there!!
Alissa, it sounds like despite all the illness he is doing well! I am so sorry to hear you have had so much junk going around. That's difficult with any kids, and I imagine is compounded with Maddox! Have you tried echinacea to help keep everyone (excluding Maddox) healthy? It really has done a great job of keeping our family well. I put drops in the kids juice and we drink it as a tea. Just a thought...
ReplyDeleteKeeping you guys in prayer!
Aww, he's so cute! I feel bad that he is not feeling well, I hope the new meds work for him. You are an amazing mother!
ReplyDeleteYou're awesome and he's just darling! Love the smiley face!
ReplyDelete