Its not that I've been avoiding you, or not wanting to fill you in on whats going on with us, specifically Olivia. Its just that (sigh) every time I do, within the next five hours whatever I told you is a lie and Olivia and the doctors have decided something else. Here's what started happening the second after I posted the last time on Monday (more or less):
Olivia's seizures have been better since getting the doses correctly, but she has been having much more trouble with the withdrawal than I expected. She is on two medications daily and they have been decreasing these doses everyday--medications that they give drug addicts to help them with the withdrawals...one day after finishing the last dose of one of these medications Olivia had significant withdrawal symptoms including shaking, yelling, sweating, high heart rate and fevers.
She is back on both of these medications still. She also had increased problems breathing again. After going back on the bipap they discovered she is having trouble pushing air back past all the soft tissue at the back of her throat because there is a narrowing of her windpipe back there. In addition to everything else, it also appears she had a cold. See what I mean? Every time she has a new symptom it could be these three things, and since the cultures take time to grow out, you know 3 days later what that one fever was for, or maybe it wasn't the illness, maybe it was just symptoms of withdrawal....
So, after all that, this is where we have landed...Olivia needs to get out of the hospital, sit up, regain strength, and start moving in the right direction. So, another surgery is needed. Olivia is having a tracheostomy afterall. Probably sometime next week, but we have to wait on the surgery schedule to say for sure. I know I was just saying we didn't ever want her to have to have a trach, but it does not appear that she will need to be ventilated through it, so there shouldn't be any tubes hooked up to it, at least during the day. It seems that this is the only way to get her out of ICU in a timely fashion, so that is what we will do. One more hole, one more scar, one more surgery. Of course there are risks and downfalls with the trach--it is not a fix all, but the opportunities for a better and easier life far outweigh the risks--which are pretty minimal.
This surgery feels different--Olivia will have a device placed in her body where everyone will see it right away. She'll "talk" different and "look" different right away to people-- to other kids. Instead of feeling sorry for her, I feel proud. Proud of what she already has and what she will teach people-- gown-ups and kids--about how being made in God's image can mean more than we immediately think. God has made my daughter incredibly bull-headed and persistant. Thank you. She has made good use of it.
Don't hate. I WILL let you know when the surgery is scheduled for as soon as we know. Updates on my 3 month old (no lie) and the ramp (being finished soon) and the CCVI Trolley Run in April (we'll ask for your money) will be posted shortly.