Out of the hospital...

For about three weeks now.

Day 1 Sorry for the lack of updates.

When she was released, Sunshine wasn't feeling or looking especially fantastic. We were worried. But she NEEDED out of the hospital. Being trapped in one small room where everyone had to suit up to come in, not being allowed to go to the playroom or outside like the other kids, like she was spreading the plague. She had to suit up herself if she needed to go get tests done, and she had to take the back route, away from the public. It wasn't really working out. Really worried. This couldn't be her new baseline. RIGHT??? But they released us while she still had some cough left and it was still a bit "juicy." Keep the vest treatments up, keep the extra inhaled meds up, make sure everything is as close to perfect as we can. 1 week later, we were still concerned. So, we called in, set up an appointment, and took her back. MommyT was a little more than "a bit" concerned because she started having back problems within a few days of Sunshine's release. Back problems that made it impossible to cook, clean, and I certainly could not drive; UncleT took MommyM and Sunshine to the appointment. They were gone for the (typical, really) four+ hours for a clinic visit. It felt like forever. I was a little convinced that they were re-admitting her. But Everyone got home in the evening, Sunshine is growing ANOTHER bacteria (a new form of Staph, YUCK!!!), so she gets a new form (for us) of antibiotic. We are also to start hyper-tonic saline in the mornings instead of pulmozyme which is now in the evenings. Sunshine has learned how to do effective "huff coughs" and breathe through the mouthpiece of the nebulizer, but she still needs the fishy to hold the nebbie up (basically, it make her feel like she's still little and frees up her hands). And she needs the nose pincher to keep her from wasting the meds. Leave it to MommyT to figure out how to make this happen. RT got the supplies and figured how to stack things. This week, I feel like she sounds somewhat better. Not her 100% but not a PFT in the 40%s. Unfortunately, I feel like this is the Sunshine we had three years ago. SUPER regression from Hell. Smart mouthed, playing with her toes, throwing tantrums, yelling, back talking, screaming, refusing to do schoolwork (which is an issue because teachers are crawling so far up our rears I think they're going to start tasting... unfortunate things soon), not sleeping, wanting to be a boy (only a big deal because she had (of her own volition) started to embrace her girlishness before this hospital stay, It seems to be a trend: *I think* the better (health, security, safety, family) she feels, the more she actually doesn't mind being a girl); as she got sicker, she has had more gender dysphoria. Jabbing at the computer screens, throwing things (especially pens/pencil, especially at people), hands in her pants, YELLING, and she smells.........RADical. Both girls smell though. I think they sweat something like I would approximate to the week old diaper of a 15 month old who has been drinking mostly spoiled milk. Yay.