Noah has had a really good day. He has been taken off the BiPAP machine except for potentially at night and has only minimal supplemental oxygen going in through his nose. His numbers have looked really strong... even his carbon dioxide levels have dropped into the upper part of the normal range, a first since we arrived last week.
The doctors want to do a sleep study because they believe Noah isn't venting carbon dioxide effectively. The study would help us know if he needs any kind of respiratory support while he sleeps at night. Unfortunately, no sleep studies are performed on Friday or Saturday nights... so the earliest we could have one done is Sunday night, and that isn't even a definite. Josh and I are hoping that Noah's CO2 numbers continue to remain the normal range so we can be discharged and schedule the sleep study as an outpatient procedure for a later date. Not sure if the doctors will be on board with this plan...
He seems to be recovering from his surgery with amazing speed... the small incisions from the procedure don't seem to bother him at all. We have just begun to feed him via his g-tube again... which is the source of fiery debate between us and the doctors. I won't bore you with the specifics, but suffice it to say that the "orders" for Noah's nutrition are ridiculously aggressive. Prior to being in the hospital, we were feeding Noah three ounces four times a day. The goal given to us this morning was to make it to five ounces five times a day by tomorrow... which is simply not realistic at this point. The nutritionists are making calculations without knowing Noah's whole story or even talking to us... not to mention the fact that the surgeon has told us time and time again that the biggest mistake made after fundoplications is OVERFEEDING!
We have already gone two rounds with the residents on the respiratory team (who don't quite know what to do with parents like us) and made a sweet dietician very uncomfortable. The bottom line is that Noah's nutritional needs are VERY different than that of a typical 11 month old and his stomach behaves VERY differently as well. We know that better than anyone in this whole hospital. We are willing to slowly increase volumes and work on his caloric intake but we want to do so at a conservative pace. I'll keep you posted on whether or not the doctors agree with our perspective!
2 comments:
You go, girl! You are the best advocate for your little man and you absolutely know what is best for him.
Stick to your guns and don't let those medical people boss you around. They think they know everything and, while they do know quite a bit, they will never know more than a mother does about her own child.
I'll pray to the Good Lord that Noah keeps getting better and that He will provide you with the strength and determination you need to stand up to the medical staff for what you know in your heart to be the right course of action.
Also, that He'll provide the doctors with the wisdom to realize when they may be wrong, the humility and grace to accept and admit it, and the knowledge they need to help you make the right decisions.
Keep us posted!
Hang in there, Deb! You are doing the right thing. Stand your ground and back your concerns with the facts. Does the surgeon who warned you about the overfeeding know that they are tryiing to double the normal daily intake amount almost instantly? Hopefully he can be Noah's advocate along with you and Josh. I'm glad to hear Noah is doing so well post-op. He looks good in the pics you posted. Everyone involved wants the best for Noah, and I hope they realize that including you and Josh in the decision-making will only serve to help them achieve that goal. I'm amazed at how many people suddenly become "puppets" when they are thrust into situations involving their own or their loved one's health and well-being. Keep on questioning, learning, reading and standing firm when you feel you are correct. You, above all, are the expert when it comes to Noah and his needs. We're praying for all of you.
Love, Kathy
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