So far it has been a good start to 2013. No hospital visits for almost a month. That is a new record for the last few months. About three weeks ago we saw his pulmonologist and he thought he was looking good considering everything he had been through. He discontinued all of his oral medications that day. Yay! He is still on oxygen and will continue to be until his respiration rate is more normal. He still hangs out in the 40-50bpm range. Still faster then "normal". I was ok with this am
Nd knowing what the future plans are make it easier to deal with. It is the not knowing plan that I don't like very much. His Physical Therapist says he should be off once he starts sitting up and gaining more strength. She says that alone should help his breathing.
Speaking of therapy, he has been making great progress. He is able to hold his head up again and can almost sit up unassisted again. He still does not like tummy time at all, but that doesn't stop any of us from putting him on it. He still protests a lot in therapy, but now we know it is just protesting and not something wrong with him. His OT is going ok. (This is his feeding therapy) we can get him to take a bite or two but he is refusing to swallow things. He likes to let it just pool in his mouth. This will be a very long road getting him to eat and gain confidence in his swallowing abilities. You can tell he is not confident he can do it. He has had a swallow study and passed it, so we know he can swallow properly.
Today we had our cardiology and GI follow ups...
Cardiology went well said he was very happy with his progress and feels we are ready to drag our appointments further out. So now we go every 6 months instead of every 3. Yay for forward progress. He also said his pulmonary hypertension looks the same, which last time he said it was very mild to gone. He said at this age you can not say for 100% certainty it is gone, but he is pretty confident it is at the very worst very very mild. Yay again. The PH monster can go away and never come back and it would be too soon.
His GI was happy with him as well. She saw him shortly after his last hospital stay and could not believe everything he had been through. He had lost some weight, but was given a pass due to his hospitalizations. Since his last visit 3 weeks ago he has gained almost 2 lbs. I know that doesn't sound like much , but for a 100% tube fed and CDH kiddo this is great. CDH kiddos seem to not like to gain weight. She took him off of infant formula and put him on pediasure. I sure hope he tolerates it. He has been kind of sensitive to new formulas. I have been told insurance should cover it due to him being tube fed, so I sure hope that is true in our case.
Over all his doctors appointments went really well. We have is neurosurgeon follow up tomorrow and I hope that goes as well. His incisions are still pretty pink and the doctor he not liked that in that past so fingers crossed Matthew passes inspection tomorrow.
Matthew has just gotten better and better everyday. He is so much more mobile and vocal then he was about 3 months ago. It is so nice to have my baby back.he rolls around and sits up and plays with toys all the time and absolutely loves playing with his brother. It is so much fun to sit and watch them.
We have managed to stay healthy this cold and flu season. I just hope and pray it stays that way. That is the last thing Matthew needs right now. We have been being very careful, but it is hard when you have so many Dr appts. And therapies to go to each week. We will just keep staying inside and avoiding busy "people" areas and hopefully we can make it through the rest of the cold/flu season without any of it.
I think that catches us up for now, I will keep posting when I have any information to share.
