5 months, 3 days since diagnosis
day #47 of current hospital stay
What a day. Riker has been very grumpy today. We have a nurse we haven't had before and he doesn't know me or my baby. I hate having a new nurse when I've been in the same place for nearly 2 months. It's hard to convince them that my baby doesn't cry for no reason.
Of course, we did not have the G-tube put in today but we have it on the schedule for tomorrow at 10:45 am. We'll stop her feeds at 4am so that we're prepared for surgery whenever they are able to take us. I can't wait for that tube to be put in. She nearly pulled out her NG tube again today and actually succeeded at pulling it out most of the way. I HATE that tube.
After the tube mishap with the tube, I ended up having a falling out with her nurse. I like him - he's a gruff Scottish man who's clearly been doing this job for a long time. He's confident, efficient and knows what he's doing. He also does things differently from all the other young girls that work on the floor. Instead of ordering the normal x-ray to make sure Riker's tube wasn't in her chest, he pushed air in her tube and listened for it in her stomach. You mean she doesn't need an x-ray 3 times a day when she pulls that damn tube out? Rock on.
Afterwards, he was on his phone (it's the pager they carry with them at all times) and I said something to the nursing student he was working with. "You may not be taught this way when you train for a real job because he's kinda old school but he clearly knows what he is doing." He put his phone call on hold. "Excuse me, what did you say?" He was clearly not impressed and I had probably overstepped my boundaries. What an excellent teaching opportunity to show the student that parents don't always know what they're talking about? Anyway, I stumbled through an explanation of what I had said and blushed through my embarrassment at his obvious anger. He told me that wasn't correct and that what he was teaching was exactly how she'd be taught. (If that was the case, why have we had a dozen x-rays since we've been on this floor? That doesn't seem to be very cost effective when there is such an easy solution. There isn't an established protocol on this floor?) Then he very gruffly announced that he'd order an x-ray if that's what I wanted. I said "Obviously, I've offended you and I apologize." "You haven't offended me. If you want an x-ray, I'll order an x-ray." "Actually, I'd prefer you didn't order an x-ray." An awkward and unnecessary exchange to have with her nurse.
Then, to add to the stress, there's the problem of where to stay when all this is over. We're supposed to stay at the Ronald McDonald House upon discharge. I have so many questions. How big is it? What is in the suite? Who cleans it? How much time will we be given to move in? Does the family moving out move the same day we move in? Or is there a day between? I hate not being able to plan.
Since Riker is getting her G-tube tomorrow and we'll be discharged 2 days after that, I wanted my brother to come and help out with anything that might need doing prior to and during discharge. If we can't get into our suite early, at least we can get him a room at the RMH and we'll have a presence as a reminder that we'll be leaving the hospital soon.
So... I call today to make sure he can get a room tomorrow. You'd think that if you had a job at the RMH you might like people. You might want to work with people during the most difficult time in their lives and offer them some sort of comfort. Well, not at this house. Every time I call, I get the rudest people. They make me feel like I am asking them if I can stay at their house and like I am somehow putting them out. This is not how it is supposed to feel when I call.
Either way, there is no room at the house. None. Furthermore, they're not even sure if there will be room on Friday when we're discharged. I need to call the morning of. ugh. I really wanted Josh to come tomorrow... I've spent so much time here with no support and these last days prior to discharge are incredibly stressful. He came all the way from Phoenix to be with me and I could really use him now. The woman I spoke with actually had the nerve to tell me that there are families that need to stay there every week because they have clinic visits. I feel for them, lady, but how is that my problem? Why do I have to feel bad for asking if I stay? She could pretend to be sympathetic to my plight, too.
So, even though they say they have no room, I'll try again tomorrow. Maybe Josh can come at least a day before discharge. And hopefully we'll have a successful surgery tomorrow, too.