The comedy of errors continues. Apparently, anesthesia can cause a slow-down in the GI tract, so yesterday's upper-GI study was pointless. So... if they KNEW that was a possible side-effect of anesthesia, why didn't they do his upper-GI study a few days ago BEFORE doing the endoscopy, etc.? I couldn't go back to the hospital to meet with the GI doc this afternoon. Mark met with him instead. Though tomorrow is going to be a pain because there's a new GI doctor "on service" and we'll sort of start from scratch with him, it seems it will be a good thing to rid ourselves of the GI doc we've had this week. He seems to be a fairly intelligent guy, but maybe he was too distracted with some other more serious cases this week and has made some questionable calls with Micah's diagnostic procedures.
We're insisting on another upper-GI study either tomorrow or Tuesday to see "if" he has a significant slow-down in his intestines. They've started his feeds back up and will increase them very slowly to see what he will "tolerate." I really don't like that word. I've been told that they consider Micah to be "tolerating" his feeds because he doesn't vomit. The truth is, even with his reflux, Micah has only really vomited one day (the day before we brought him to the hospital). When he refluxes, very little actually makes its way to his mouth. I don't think he has the muscle tone required to truly vomit. And besides, when he seems to be getting uncomfortable, I have the ability to "vent" his stomach and take out the excess air and fluid through his G-port. I don't want to have to stop venting him just to prove to the doctors that he's not "tolerating" his feeds. Does screaming and a bloated stomach not count as "not tolerating" his feeds?
I'm hoping to get a nutritionist to consult with us tomorrow. I'd like to know what level of food Micah needs to be getting for sustenance. I want to make sure that they're calculating his food level while taking his low motility into account. It's possible that we're over-feeding him based on some kcal/kilo calculation for a "normal" kid and I'd like to consult with a nutritionist who knows more about kids with Down syndrome and the effects of slow motility.
I realize I've been more than a bit negative lately. I'm not sure what to do about that except pray. Could you please pray that I would have a peaceful heart and speak pleasantly to Micah's caregivers? The nursing staff has been wonderful and I hope I can show them some appreciation in the midst of my frustration.
BTW... Micah is 9 months old today. I'll try to post some photos soon.
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7 comments:
Jennie-
I am praying for you. I can totally understand your frustration as a mom who wants what is best for her baby without putting him through more then necessary. The doctors may be very knowledgeable however you are his mom and his advocate and you know him best. Don't second guess yourself or your instincts. You are doing a wonderful job caring for this precious baby and making sure that everyone else does as good of a job. Hope they figure it all out soon so he can get the nutrition he needs and you can all get home soon.
Hugs and Prayers
Rachel Lenda
Sending love from Tennessee. My prayer tonight will be that God will fill you with a supernatural grace to speak boldly and assertively with gentleness and love. You are a great mom and a great advocate for your son. Christ's love shines in your eyes, even when you are downtrodden. I will pray that there will be a quiet gleam in your eyes that can only come from the hope and strength of our savior. I love you friend,
Ann
PS - I hate it when I cry typing emails - it's hard to keep the keyboard from getting wet!!!
Jennie, you're doing a super job! You know Micah more than anyone and are his best advocate. I only hope that I have the strength to stand up for Lillian when the time comes, like you do for Micah.
Sonia
Hang in there. You are doing a great job. It is hard to watch your baby go through these medical procedures. I will pray for your peace, the doctor's abilities, and Micah's healing.
Happy 9 month B-day, Micah!!!
Many more prayers and hugs coming your way. UGH!!! I'm just so sorry Micah is having to go through more testing, especially the repeat testing. Not having answers is so very frustrating, I can only imagine. I think it's a great idea to meet with the nutritionist. Thank you so much for the updates....we just keep praying for you all. Kris
Jennie,
Just wanted to send you some love and prayers! I have been out of town since Thursday morning, but you all have been on my mind and in my prayers. We will all continue to pray for you. We just hate that your little guy is going through this. Sorry for the lack of commenting while I was gone-it was only because I wasn't near a computer. :)
Amy
Oh how familiar a place you are at. Our son Tommy has Ds and Hirschsprung's disease. He had an AV canal repair and now has a Gtube. Whew! The flood of emotions and frustrations all came back when reading your blog. Just remember we will all have a different kind of patience from these days... it's more like perseverance.
And what a handsome kiddo Micah is! Hang in there. I'll pray for strength and patience for your family over the coming days. And for Micah's health and healing from all these exams.
Much love! Sandi
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