Friday, July 31, 2009
Friday, July 17, 2009
One of our favorite families! It'll be interesting to see if Jerome is happy or sad that Cicily has her "necklace" back.On Tuesday July 7th (almost exactly 2 months after it was removed), Cicily had her tracheostomy re-placed. We would have liked to give Cicily a real chance to learn how to handle her secretions without a trach and without being sick. She never really was 100% healthy the whole 2 months her trach was out. However, her episodes just got too severe and her chances were running out. Now we'll have to figure out what works to thin her secretions and she'll have to have her trach capped more and figure out how to cough and breath and not get scared with it all. (Damn that lack of white matter!) It still seems that the trach will be a temporary thing in Cis' life. Chris and I are actually quite relieved that it's back. It's funny, as much fun as it was to hear Cicily's voice when she laughed, I was also happy to hear her trach laugh once again.
Maya was of course the first to get Cicily to smile again! She even got a laugh out of her. One morning we brought Cis' dog Lucy for a visit. That plus Maya won lots of smiles!
Wednesday, July 15, 2009
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.
Cicily stable in the PICU at her "home hospital"
Chris and I both thought Cicily wasn't going to make it past this episode. When Chris went to ask our neighbor to stay in the house with Maya before we left in the ambulance, Chris told him he thought this was it. At one point before the CPR I put my hand on Chris' arm and said it's ok. I was very calm with the idea that if it was Cicily's time to go then she'd at least be free of her ill-functioning body and she could go chase after some ducks with her great-grandmas. I'm incredibly happy that Cicily did not want to leave us though. She amazes me at how gracefully and joyfully she accepts her calling on this earth.