More answers from comments posted the past few days:
Have you tried a pacifier?...Now (my daughter) ate before she would drink. She liked mashed potatoes and mac n cheese. Not sure if Emma is eating foods yet,but it might be worth trying. The 7th through 10th days were her worse days. They said the scabs were coming off... -Robyn
Emma HATES the pacifier. With a passion. Weird, I think, but whatever. Emma's not eating solid foods yet. I've heard these next few will be the worst... Not looking forward to that, but that means that after that will be BETTER!!
Will she not eat the pudding either? wasn't that what she liked at home? If you could manage to get a little on your finger and on her tongue....maybe....-Jan
I think you're thinking of little Ava, Charissa and John's little sweetheart. They adopted her at the same time as we adopted. You can follow their story HERE.
Meredith,Don't you wish you could tell what was going on in Emma's head? -Carolyn
Wow, that would make this so much easier!!! LOL
We put ben on a what they called a "total nutrition IV" for a while when he would not eat. Is that the kind of IV Emma is on until she decides eating would be great to start again. -Mom C.
They didn't want to do this for Emma because they wanted her to feel hungry so she'd eat.
Don't you love hospital rooms? -Bethany
So what was the prognosis of the echo? Were here pressures any different? Bout the same? (did I miss that in the write up, sorry if I did) -Jan
Sorry, I guess I never did post this! The echo showed everything they'd expect from her AV canal. Don't know if I've mentioned it before but she also has a PFO and a PDA. Anyway, they got the measurements for the patches for her OHS soon as well as another accurate look at the heart. The Holter monitor also said the same- the rhythm is fine, so she's ok with the HR drops, but let's do O2 to keep them from happening anyway...
Hi Meredith, I hope you got your nap. It's hard when you aren't getting enough sleep. I was wondering, will having the holter on with the leads on her chest irritate the rash? P.S. I received an email from someone on the committee(?) for this years Buddy Walk and I'll definitely be doing face painting and probably glitter tattoos too. I can't wait! -Kelley
The Holter didn't irritate the rash, thankfully. Actually, the rash started clearing up during that time and even receded under the patches. Weird, huh? I'm so glad you'll be a part of the Buddy Walk this year! I'm looking forward to it!
Meredith, is it possible that Emma's rash is a latex (or other)allergy that she is developing from all the band aides, tape, leads, etc? -Natalie
No, her rash on her chest is spreading and not where she's "touched" necessarily (they do listen to her chest but often outside her shirt, and they listen to her back and stomach too where there is no rash). She doesn't have a latex allergy- we're pretty sure of that. The face bandaid is the only reaction related to any tapes, but it was on her FACE, which is generally a more sensitive area anyway...
Mer...I know she has sensory issues when it comes to food, but have you tried jello with her at all? She needs to try and get something to moisten her throat. She's probably in so much pain from a dry throat, and possible scabs coming off as a result. If you could only get it moistened so that maybe she will actually finally WANT to drink. -Me
She chokes too much on any solids and throws up, so we didn't try anything like jello. We did keep her throat moist all the time though by squirting a little milk in regularly and water too.
Just a thought are you sure she isn't allergic to the adhesive? -Anonymous, DoveFamily, Dolores
No, we're not SURE, but those reactions weren't from adhesive :) Just the one on her face but I think it's more just sensitive skin than an allergy since it was just red and not really a "rash".
Is she blistering with the other IV site?- Mom C.
No, her other IV site was fine. When we took it out we realized there was a little 'pinch' so she has a 1" scratch across her hand where the "no no board" (yes, seriously, they called it that!) was taped down. The adhesive didn't hurt anything on that hand and the IV stayed good :)
Oh, Happy Birthday to your husband (my birthday happens to be today also, but I bet I'm a little older). -Danielle
Happy Birthday to you also! I'm sorry to hear of your health struggles and will be praying for you. Thank you for the kind words and encouragement!
Does she just eat bottles? I know applesauce & jello pudding always worked for mine but don't remember if Emma was on anything solid before the surgery. -Stephanie
Nope, not yet! We are hoping the tonsils being gone will help in the long run with being able to swallow though!
when my Josh (also has T21) had his T&A a year go... he could NOT tolerate the Tylenol w/codeine at all! We stopped it after about day 2-3 and started just regular tylenol SUPPOSITORIES!! It was a miracle!! -Susan
Emma seems to do pretty good with the Ty w/ Codine. She hasn't had any type of negative reactions to it other than not wanting to swallow it. If she goes back down-hill I will definitely try the suppositories!
I can't remember if Emma was eating any solids before this or not, but high water fruits are a source of water too as well as baths. I know that sounds strange but the water will soak through the skin and has helped keep Dom hydrated in the past when he just wouldn't eat. -Cathy
Ah... time for a bath anyway :) A good soaking will do! No solids for this chicky though.
Tylenol with codeine is the worst for constipation! It had Payton all stopped up, so then we were dealing with sore tummy and throat together. Try regular tylenol if you can and see what happens. Praying the little miss drinks!!! Can you dropper her some water? What about secretly in the bathtub without her knowing? LOL I'm stretching here, I know. LOL -Bethany
Ah... the culprit :) I don't suppose being dehydrated is helping either. We started her on regular Tylenol but went back to the big guns. She was still hurting with the other. It's enema time, we have this problem (um, we being her and Brianna!) regularly and Momma's a pro at enemas now (ug...)