Day 4 -- Hangin' In There

Jordan is doing well, but still in the hospital. She is back to "baseline" on everything except seizures & secretions. Okay, that's a lot, I guess. We increased her Tranxene for the seizures today. She had 14 in one hour this afternoon while I was holding her, and some of them I think may have been clonic seizures, which are new for her. I'm still not sure, though, but she was definitely having a lot of myoclonics & tonics.

The Robinul is helping with the secretions. She's having longer and longer periods between doses, and handling it okay for the most part. She's also handling her full-strength feeds, (Compleat + water), finally. And her snot isn't yellow, so the Rocefin on Sunday night must have done its job. Her cough is much better than it was on Tuesday (it was deep & very painful-looking), so things are improving. We were hoping she would be discharged today, but her discharge orders state that she must have home nursing to leave the hospital, so we're stuck until that gets sorted out. I REALLY want out of there, but at the same time, it's a bit of a relief to still have the support the nurses offer while she's in the hospital. When the Robinul wears off and the secretions increase, I can spend an hour or two suctioning her every minute, sometimes more frequently. It also means that she has a pulse-ox to watch her O2 saturations, and oxygen on hand in case she needs a little extra. She didn't use either of those for most of the night last night or before noon today, but in the afternoon we were back to blow-by OOOOOs for a few hours.

We are finding the support in the hospital to be wonderful, despite the fact that we hate having her there! Doctors, nurses, and social workers are writing letters and making calls to our insurance company & to state agencies to help us get some home nursing care in place. They all expect it to be a long fall & winter (i.e. cold & flu season), and with the right services in place perhaps we can reduce the number of trips or maybe even avoid the hospital all together over the next half-year. Perhaps I'm being naive, but I can dream, can't I?

Avery & I are going to have a mommy/daughter day AT the hospital tomorrow. We have an evaluation early in the morning, so we'll all be there, but then she'll get to play hookie from school & stay into the afternoon. I talked to a child life specialist today who is going to make up a bag of goodies for her, and make sure the play room is all ready for her tomorrow. There's also an outside playground right on the 3rd floor, a large garden area in the courtyard, and plenty of ice cream and pastries at the cafe & cafeteria.

I'm getting better about being away from Jordan and the hospital while she's there. This is the first time in her 20 months of visits that I've left without a fight, stayed away for more than a few hours, and now, tonight, left her there without a parent (previously when I was gone Devon was there, per my demand). It's tough!

I know that I have to keep the big picture in mind, but it is hard: Avery misses me, and Jordan doesn't. Jordan is getting care from others and I don't have to be there to watch her sleep & get suctioned. I trust the nurses at this point to feed & medicate her according to her schedule, and to respond to her coughs, screams, and beeping equipment. Jordan is in good hands, even though they aren't mine. . . .

However, Avery needs me here to be her mommy. We're camping in the back yard again tonight -- she's decided she wants to do this "all the nights" -- except when it rains and snows -- she loves the adventure and the one-on-one time with me when we come out here to go to bed.

But even though I've made such strides, and everyone is encouraging me to do so, I'm still being eaten away by not being there. I remember when Jordan was about 3 months old and we spent the night there after her g-tube was placed. We shared a room with a girl who had just had heart surgery, and her parents were gone for a few days. I don't know why, but I do know that I felt so sorry for that girl, in the hospital all alone. Now I feel like Jordan is that girl, and I'm ashamed of it. What's a parent to do??? I just feel so guilty & torn either way, it's a no win situation. But in the end it comes down to this: Avery misses me and Jordan doesn't. So, here I am in the tent in the back yard, loving every minute of it HERE, and trying my best to let go of things THERE.

Now, off for some restful sleep (I hope), to lead us into a successful day with evaluations, meetings, & planning to get Jordan out of the hospital and home. A little home nursing help for our family wouldn't be bad either. That's what I'll be dreaming about tonight.