Not much time to post today (I still want to post about my weekend in Nashville, but that will have to wait). But we have an important prayer request.
Micah's congestive heart failure is still not "under control." His tachypnia (rapid breathing) seems to be worsening and the meds are not helping. Though surgery *might* be more effective a few months from now (there's some research showing that low weight really doesn't impact the outcome as much as initially thought), Micah's cardiologist believes that sooner is better than later for him to get his open-heart surgery (OHS) to repair his AV Canal defect. She also thinks that his heart issues could be part of the reason that he is having such crazy digestion issues (so far, Nutramigen is not helping and he was screaming almost all night).
Specific prayers:
1. a surgeon in Milwaukee to agree that Micah is ready for surgery
2. an opening in the surgeon's schedule in early May
3. the measles "outbreak" in Milwaukee would be contained so that there is no delay in scheduling "non-emergent" surgeries at Children's Hospital (there are currently 3 known cases of measles and one case of rubella in Milwaukee... it's HIGHLY contagious)... by the way, the cardiologist wants Micah to continue getting some breast milk for the immunities... that doesn't jive with what the gastroenterologist recommended... who wins?
4. Micah would continue to be healthy (he currently is a bit stuffier than normal... please pray he's not getting a cold)
I'll post about this again in a couple of days when we will hopefully hear from the schedulers in Milwaukee. Just a reminder... if you'd like to be alerted when I update the blog, you can receive an email the night after I post by entering your email address on the right column. =>
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8 comments:
You're all in our thoughts - hopefully things will progress quickly & smoothly for Micah!
We are praying for an opening in the schedule and for the surgery to go perfectly.
We are praying for you, too! Thank you for keeping us updated. I know there are a thousand other things to do each day! We'll keep praying.
we will be praying. so sorry about the mixed messages as well-- i know you are doing all the research you can.
We're all praying as well.
Many prayers being said here for little Micah regarding all of your prayer requests!!! We'll also add the prayers that open-heart surgery not only perfects Micah's heart, but also that the digestion problems clear. Hopefully you will have an opening in May. I'm sure he will do beautifully!
Saying a little prayer for Micah.
Not sure how to do this?? New to on-line business. Please email me, tracyvelander@yahoo.com. I can get you Elecare. My daughter with DS uses Elecare and I have the same issue. Your "sarcastic" Comment is not sarcastic at all because you CANNOT get it over the counter and my insurance REFUSES to pay as well for this $45/can stuff! It does work wonders though. I can get you in touch with a drug rep and I will send you a couple of cans. Good luck!
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