Wednesday, August 22, 2012

Home Sweet Home

Well, we've done it. With the help of our family, we're all moved into our new home. We still have to wrap up things at the old house, but that's mostly cleaning and a bit of yard work. We have a long to-do list here at the new house, but things are going so smoothly. I want to send a HUGE thank you to our family, that helped us move (one load, yeah!), brought us eats, treats, and have continued to help us with unpacking and such. We haven't gotten around to taking pictures yet, but we won't forget to share them with all of you.

The house is amazing. It's definitely the nicest home I've ever lived in, that's for sure. We're calling it our "early retirement" since taking out our retirement money helped us afford it. Oh well - it's what our family needs. Harper has already been asking when Norah gets to come home to the new house. I just hug and squeeze him, and tell him that someday she'll come home. She'll have her own room. She'll have everything she needs here. It won't be easy to care for her with her medical needs, but we're willing to do whatever it takes.

Yesterday we found out that Norah is going to need glasses. Nearsightedness is related to her condition. We have to go to the opthamologist every three months to make sure her retinas are intact. Her retinas looked good, but he did say that she had mild myopia (nearsightedness), and will require glasses when it's age-appropriate. Our appointment took seemingly forever. We were there for hours, mostly waiting. You would think that they would allow a trach/vented patient to be bumped to the front of the line. We had battery life, oxygen tanks, and respiratory fragility/virus susceptibility to worry about, but that didn't seem to speed us through the appointment like it does at other clinics. As a result, Norah hit her new record on the home vent: four hours.

With the excitement of moving as well as Norah's success on transports (with the home ventilator, photo left), I eagerly asked South Davis when they thought she'd be able to go home for a few hours for a day trip. Exciting, right? Wrong. They don't think insurance will allow us to take her home. They think if she's well enough to go home, even for a few hours, she should be well enough to move from LTAC (Long Term Acute Care, with a better nurse to patient ratio of like 1:4) to skilled nursing (where the ratio is something like 1:8). I was pretty much crushed. I wanted to cry. I didn't. I think I'm just too tired of crying so often throughout the last year. I'm still going to hold on to hope that she will be able to come home for a day trip, insurance be damned. I want to show Norah her room. I want to cuddle her in the rocking chair, play on the carpeted floor, have family snuggle time in mommy and daddy's bed, and let her take a nap in her own crib. I want to sit her in the grass in the yard, and show her the flowers and the dragonflies. I want a little taste of normalcy, even if it's only for a short time. Sigh. Patience was never my strong suit, but I'm working on it.





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