Ramblings of a tired Mom....

What a day! I am so tired that all I really want to do is crawl into bed and sleep for a year, but here I am on the computer instead. Elaina is...well, she's being Elaina. Now that we're on the floor, we have a whole new group of doctors (and residents) working with Elaina. Not only does this have the positive aspects of new eyes seeing things that may have been overlooked, it has the negative aspects of re-doing things that have already been done. The new docs want to revise her diuretics, they think that they are the cause of her fevers. So here we go again. I gave them my input and asked them to check with the other doctors and her Cardiologist, so hopefully that happens. I had a care conference today, and it went fairly well. Elaina still needs to prove some stability/predictability in order to be moved to South Davis. I was a little bit resistant to continuing the South Davis plan initially. After all, the reason I'd looked into going there in the first place was because we weren't able to get to the floor and I wanted Elaina to be in an environment, out of the ICU, that she could prove a little stability before she comes home. (I really don't need to have her Life Flighted back.) Now that she's on the floor does she need to have another downstep? Actually, it might be a good thing. A very good point was made at the meeting today, Respiratory Season starts in a few short weeks. Primary Children's is the place that all the kids with severe respiratory illnesses (RSV, Influenza's, etc) will be admitted. They won't be admitted for treatment at South Davis, so in order to protect Elaina from these nasty bugs, South Davis is still an option if she's not stable enough for home within the next 3 weeks. The other main issue of concern was feedings. Elaina has become VERY proficient at pulling out her NJ tube. In fact, she's pulled it out 3 times this week. (Silly girl, she just doesn't understand that they have to put it right back in!) They don't have the ability to put in NJ's at South Davis, so if she pulls it out, she gets to take a fieldtrip back to PCMC to have it put back in. SO, we're thinking about doing a swallow study next week to see if she has the ability (or is strong enough) to protect her airway and maybe do NG feeds again. The problem would be giving her enough calories during the day, because it would be too dangerous to feed her at night while she's on the c-pap (it dramatically increases her risk of aspirating). We wanted to eventually get her strong enough for the Nissen and either G-tube or GJ-tube surgery, but that is still 4-6 months down the road. Now it's weighing the risk/benefits of NJ versus NG while she's still in the hospital. Even though her aspiration risk would be greater with NG feeds, if she were to be at South Davis and monitored by nurses, it would be safer than being at home with me sleeping at night. This could possibly mean keeping her at South Davis until the surgery, so another 6 months in a hospital setting. I don't know what to do. I want her to come home, but I am just one person and can't stay awake 24 hours a day. I can't afford to hire a nurse to come in at night while I sleep and my insurance won't cover it either. South Davis is an excellent facility, and their focus is really rehabilitive, so they would be able to help Elaina with her delayed developmental skills. They can work with her on the feeding issues (other than the constant hassle of replacing NJ tubes) and provide her with a better quality of life than she has at Primary Children's. So I have more big decisions to make in the upcoming days and weeks. Right now all I can do is wait for the tests to be performed and for the results to come back so that I can make the best decisions possible. I can't worry about something that hasn't happened yet (well, I could but that would be an awful waste of precious energy!) and I'm not willing to make an uninformed decision, so we'll just have to see what the next couple of weeks brings. Well, I'm going to go crawl into bed now. This whole move to the floor and big care conference stressed me out and I haven't slept well for a couple of nights. Hopefully I can get a good nights sleep tonight so that I can enjoy my weekend! Thanks as always for all your love and support.
Hugs!!!!!