The Latest Hurdle

We took Abby back to JHH last night because she had a fever, bloody trach secretions, lots of secretions in her nose and mouth, and had been exposed to the flu. I called to talk to a Pediatric Pulminologist after we got the bloody secretions. Thankfully, I spoke to one who had seen Abby as an inpatient and she definitely wanted us to bring her in. Unfortunately, they had changed shifts by the time we got there and we saw someone who'd never seen Abby. They sent us home thinking we were paranoid, overreacting parents. I'm hoping they are right.

Nothing has changed, but nothing has gotten worse either. I'm not overly confident in the trach culture that was done, so I may get another one done at the pediatrician's office if things don't improve over the next few days. (Obviously, it's right back to JHH we go if things worsen!)

We got home about 1:30 a.m. last night and went to bed around 2:30, only to be up bright and early for work with no naps in sight today, and a night nurse not coming until midnight tonight. AND, I just found out that we might not have nursing during the day time tomorrow. BUT, it's much better than no nursing at night!!

On a positive note, we have made some nursing changes and are very pleased with the way things are going. We now have two wonderful day nurses who read books to Abby, play with her, sing, and strive to keep her awake and active. They truly make her their focus. We're really happy now and much less stressed! Now if we could just get some sleep...

Comments

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head. It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!! (Note the Lysol wipes in that last picture. They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun! They played lots of their own music, with some classic rock mixed in for the adults. There were also quite a few jokes and references to Baltimore, which was kind of fun. The whole night centered around this robot named Rock-o-Matic, or "Rocko." This is Mover Scott, and he wears Wobble Goggles that help him see new ideas. Caleb and Abby have a pair of goggles too. :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap. The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers Caleb did his share of singing and dancing too. He knows m...

Life as a Leach

Search This Blog