I often wondered how mailmen could go "postal"- I mean, everyone has bad days once in a while, but to go postal? Well, folks, I'm officially there! I am sick and tired of being in this hospital. Yesterday we were told that we would be going home today (Wednesday), so long as the chest xray and blood results came back. So, being optimistic, we packed, and cleaned the Ronald McDonald House Room- Felix moved our stuff out... and here we are- still @ the hospital! UGH!! The nurse came in with a weird expression on her face, so I simply asked if we were going home. She deflected to the doctor... that means no, obviously.
Apparently, her chest xray looks fabulous (I didn't expect any less!) and her blood results were great too, but they're worried about the withdrawal factor. To that I say- SERIOUSLY?!? SERIOUSLY!?! I've been telling them for the past week that I thought much of Grace's symptoms were withdrawal related.... Whatever! Here's the story... Grace was on loads of meds (dex, ketamine, fentanyl, vercet, morphine, etc.) and we went home using ativan and methadone. Using the original weaning schedule, we would have completely stopped all meds yesterday. Instead, upon admission they increased her meds from 1x per day to 4x per day, and still stopped her meds- 3 days early!! Of course she's in withdrawal! So, I've got a cranky kid on my hands, but once she gets ativan- Gracie's back! Last night in the middle of the night we hit a rough patch- Grace couldn't make it 2 more hours (she gets it every 6 hours, as needed) so we had to use an alternate medication... that was @ 1 am. Because of that med, we're not going home today. Do you think they told me that this morning? Nope... early day? Nope.... noon! After I'd spent all morning packing!! We'll still be back in a few weeks for her cardiac cath procedure, so this really is quickly becoming our 2nd home. Felix and I joke that we should make an offer on a room @ the Ronald McDonald House and just move into it...
She's back on methadone now 1x per day and the ativan 3x per day. She's currently doing the can-can in bed, giggling and smiling. So great to see my baby back! We did an EKHO here today so that we can have a post-op baseline, and now it seems as though we can postpone the cath a bit longer (maybe a month or more?).
Someone sent me an interesting article today about PTSD that follows families from the NICU. I think any parent that spends a good portion of time in the hospital can relate- check it out:
Grace is back on oxygen, occasionally. She'll need to be on while sleeping and when grunting. Since the hospital can't monitor us 24x7 (isn't that their job? I'm just sayin'....) they're keeping it on her full-time now.
All in all, this hospital stay has been a 5 out of 10 at best. I don't feel like we accomplished much out of this stay, other than accumulating a few more diagnosis'. I did have great friends and family that kept me sane and sustained during this stay. Mark & Kelly brought me lunch, snacks, a case of Dt. Coke (my vice!), 2 cases of water, and offered to mow our lawn. Joy and Jerry brought us paradise bakery- a yummy salad, a few sandwiches, cookies, drinks.. it was fab! Tiff Deacon brought us a rotisserie chicken for dinner, some snacks, fruit, drink mixes- life saver! By the way, the drink mixes went awesome with Mark & Kelly's water cases. :) Maren and Deborah are helping us transition home with more Paradise. The BEST friends ever! Mom & Pam have brought loads of clothes, washed loads of laundry, have done Starbucks runs, candy bar runs.... the list goes on and on. I can't believe it's been 5+ weeks since we really have been home, save for our 4 day mini-trip back to Surprise.
YAWN! What a day... hopefully home tomorrow! XOXO