Monday, June 23, 2008

One more time...

ENT was in this morning and we're here for a while still. He mentioned that in a few days if she is still not eating possibly discharging her to see if the change in scenery and being back HOME would be the kick she needs to eat. I told him just a 2 second history (malnourished and hunger doesn't bother her, major heart defect, and we live across the state) and he said he doubts we'll go that route but it's an option "down the road".

Emma's HR started dropping as soon as she fell asleep last night. I don't know whether it was staying in the 50's or not... because the answer to having her alarm all night is aparently turning the alarm setting down to 49 instead of 55 (started at 59 a few nights ago- that's the normal "adult" setting). They also put her on oxygen again and her SATs went up to the mid-upper 90's from the low 90's. It also seemed to keep her HR in the mid-60's range which is better than low 50's! The night nurse suggested we might be going home with night time oxygen, depending on what cardiology says this morning. So... she only went off a few times and other than the nurse and tech coming in a few times we both had an ok night sleep. Considering.

One more day of sitting. Maybe she will decide to EAT soon though and we'll get to find our way home. She screams and thrashes at the sight of the bottle. She get upset when I'm eating if she's sitting with me (maybe she thinks I'm going to try to sneak her something??). The ENT did say that he's not got any reason to keep her here from a health-standpoint, but as long as she's not eating she needs to stay. And of course he said whatever cardiology wants to do in that realm is fine as far as keeping her longer. But, since she's not eating, she's still here for a time.

Mike, Mom, and the kids made it home without any mishaps yesterday. Unfortunately, last night he called me pretty late (I was asleep, but I think it was around 11:15?) and said that his key to our van (remember we borrowed my mom's van for the trip) was in HIS car... which is here in St. Pete for me. He looked around and found a spare and was relieved. Until this morning. I guess technology wasn't high on his list today because the key has a chip in it and the spare doesn't start the engine. So he has no car.

Luckily, they didn't move the carseats out of my mom's van and she is on her way over now to bring Mike her van. Kristopher's going to a friend's house this morning, Micah to my mom, and Mike's mom is watching Brianna at our house. At lunch time Mike's going to bring Kristopher home and he'll stay with grandma the rest of the day. Mike has school tonight so it'll be a long day for him and the kids too.

THANKS MOM AND MIKE! I hate not being there to help but I know Mike can take care of things. THANK YOU to GRANDMA and KERRY also for helping out with the kids today!


  1. Meredith will she sucks on ice lollies - ice pops? I find mine will always have one of those when poorly? Have you tried a syringe to get a little of something she likes into her mouth to remind her how she likes the taste? Probably naive suggestions but I hope they help

    sarah and immy from the UK

  2. Braska has the same no-hunger thing... she could go all day without being fed and she wouldn't show the first sign or complaint. I hope Emma gets a mind to eat very soon!

  3. Is it possible that her heart rate has always dropped like this at night? (not sure if you've tracked her overnight hr prior?) Given her condition - perhaps this is her norm? (My son's HR and blood oxygen drop at night with his sleep apnea - a strange normal for him and they don't want to do surgery yet) Of course the no eating thing is another problem all together... sending well wishing thoughts your way...

    Sarah - from NY
    (been a lurker following your amazing journey... thought I'd post for once :-)