Thanks for the encouraging comments. As to those that asked about a private room, there aren't any on this floor. All rooms have 2 beds but for about 15 hours we did have one to ourselves! I hear our roommate is going home, and then she was in pain again, so now I don't know. I hope she is able to- both for her sake and ours :) By the way, I was concerned that she might have something that could be contracted, and if she did start throwing up I planned to talk with the nurse about my fear for Emma to catch anything since they didn't know what was going on with her. Well, she has e.coli in the form of a UTI. So that is good to know that it's not something Emma (or I) might get. I hope for her sake AND ours that she is able to go home today! (I'd like to sleep tonight :) ).
Emma had her echo this morning (for those not in the heart-world, this is an ultrasound of the heart). They bring the machine right into the room and do it bedside. They sedated her with oral meds before it and she laid really still although she didn't go to sleep. She tried to grab at the tech a few times but was really good overall. The tech started to shut down and then decided to turn the machine back on and get a few more measurements so that they could estimate the size patches that Dr. Q will need to do her heart repair. I asked. WoW! One opening is a little over 9mm and the other is just over 11mm! That's about 1cm each! That's huge compared to the size of her heart. I wish I knew what Brianna's patches were. I've always thought that Emma's must not be as large as Brianna's were because she is doing so well, but that just seems so big to me that I don't know. Granted Brianna had an additional ASD and VSD so maybe that's part of it. Emma has a PFO and a PDA still, but those are both "small" and "tiny"- yes, those are the charted "medical definitions!"
After the echo Emma and I sat for a bit together then I laid her down and we gave her some benadryl. Her rash has filled in more on her chest (almost a solid covering not as splotchy) and also has moved around to one side- on her side under her arm and up her back on her shoulder blade. She went to sleep after that and slept through having the holter monitor put on. The tech said she was told Emma was 5 so she brought big leads. Um, well, she IS five... She made it work. For those, again, not in the heart world, a holter monitor is about the size of an electronic planner and has about 5 or 6 wires coming out of it. Those are a few feet long and have little ends on them with sticky patches to stick on to the person's chest. These are the same as leads that are used to monitor a person while at the hospital or an EKG. Those leads are stuck onto Emma's chest. She'll wear them for 24 hours (actually, it'll be about 22 so the doctor can read it before lunch) and the little box records every beat of the heart in that time. It will record her waking hours and her sleeping hours. It is a much more accurate read than just the heart rate which is from one single little probe on her toe. That's all we've had to go by so far.
So... tomorrow the doctor will get the little box back and will look over what it shows. He'll decide whether there's anything going on that's unusual (well, outside of the fact that she's got this huge unrepaired heart defect...) and he'll see if anything needs to be done after seeing that. Brianna had this when she was here after her open heart because she was having episodes of tachycardia- fast heartrate (170/180). It was just a fluke and she was fine. They looked over the monitor and didn't find anything disconcerning. We hope that they'll see what they would expect to see with her condition (or... maybe... just a little bit BETTER??) and things will continue as planned.
After a morning of pokes, prods, sedation, and, well, benadryl (gee, we could have saved the sedation if we'd just given the benadryl earlier!), Emma is now sleeping well and has slept through the past 2 "official people" to enter the room and prod her. I also ran down to Walgreens and to the cafeteria for food.
Walgreens-- they must have been informed that we're on the naughty list and that they should mess with us a bit too? That's about how I feel right now anyway. On Friday Mike put in the prescription and they told him it would take a day to fill, so we could pick it up after 3 the next day. We forgot. That's ok though, because when Mike got home on Sun night there was a message on our machine that said "I'm sorry, we're not open tomorrow, so your order won't be able to be picked up on Saturday. We are closed for the weekend." Um... ok... weird. While waiting for the cardiologist yesterday I wasn't able to leave and go pick up the prescription, so today I walked down to get it. It's not there. It's not in the bin AND it's not in the computer. I explained that my husband had brought it in on Friday and since they weren't open for the weekend I came to get it now. Oh... it's YOU! I love being "It's You".
They had stored her prescriptions instead of filling them. WHY you ask? That doesn't really make any sense. Well, they saw that they were from the hospital and thought maybe I'd want to have them filled elsewhere so they didn't fill them. So they weren't ready. So I left my kid and walked 3 blocks for nothing. They finally decided to go ahead and fill it now (weird that that took a discussion, I know). It would be ready in 20 minutes. I said I'd be back later-or tomorrow, but I'd be picking it up. Don't store it in the computer, I want it before I leave for home! I guess I'll need another walk before 5 or tomorrow.
Now I think I'll take a nap, which probably means that Emma's about to wake up. That seems to be the way it works, doesn't it?
Sorry not such a wonderfully postive post. I'm tired. It has been a good day overall and Emma is feeling ok even though she hasn't eaten still.