Sorry it has taken me so long to post! Normally I try to blog while Faith is in surgery (on Wednesday, May 22nd) but it actually was such a quick surgery I ended up using the time to get lunch and calling my parents. Then I was busy in the hospital taking care of her for the first night, then we left and went to a hotel (waiting to get back into the Ronald McDonald House) and we've just been keeping very busy until today.
So, let me back up to the beginning of our trip - we left early Monday morning - Fred and Anthony drove us to the airport at 8am and we caught an 11:30 flight to Dayton. I have to say, getting through security was a pain this time around. Faith actually had to be frisked (they called it modified becasue they don't touch kids private areas if they can get approval not to) because her RED (halo device) set off the metal detector. Lesson learned - ask for a wheelchair in the future, then they would have rolled her through a separate gate and only checked her hands with a swab test afterwards.
Lately Faith's food has been a lot more difficult to bring through security - ever since I've been carrying her homemade blended formula with us I am used to them scanning that in a machine that can scan clear bottles. But, starting the day of the Boston Marathon bombing, when we were flying home from Kansas City, they've started giving me a hard time about her pre-packaged formula that comes in boxes (like kid's juice boxes). I've taken this stuff through security many other times with no questions but the past 4 flights I've been on since that day it's been a problem - so now I have to be frisked or let them open one of the containers (which I have no way to reseal). I really don't care about being frisked, I don't find it all that big of a deal, but it's just a hassle and for something that is obviously marked children's formula? Really? It's stupid.
Anyway, we landed in Dayton and the hosptial shuttle picked us up and drove us to the Ronald McDonald house. We got there in time for dinner and then we watched a movie in our room. On Tuesday we went to the zoo. I borrowed our neighbor's stroller (thank you so much Becca!!) which has been so great to have while we been here and perfect for the zoo. I am able to put Faith suction machine in the bottom of it and Faith can easily get in and out of it, when she feels like walking. She really enjoyed the zoo and we took our time, spending as long as we wanted. We saw the Cheetah show where they run the cheetahs and enjoyed some other favorites like the Polar Bear swimming.
That night was a particularly difficult night - Faith has been off all pain medications for 2 or so weeks now and I ended up forgetting to bring any pain medication with us. I thought of it once or twice, that I needed to bring it, but I never got around to pulling it out of the cabinet and packing it. Ugh. So, for the first time in weeks, Faith started crying and signing that her jaw was hurting. I didn't know what I was going to do. Here I am in the Ronald McDonald House, not at home, with no tylenol or anything else and it was after 10pm at that point. No car to go anywhere and no one to watch Faith while I went anyway. I was pretty sure it was just anxiety about the surgery that was upsetting her, but still some tylenol or the Oxycodone they gave her for pain would have been really helpful in calming her down and helping her to fall asleep. I told her the only thing we could do was actually go to the hospital (across the street) to which she said yes. Oh great - the night before surgery and she wants me to take her to the hospital for some tylenol. Well, I really didn't want to spend the night in the ER, so I had to tell her a couple of times let's just wait and see. Finally I thought of at least turning her pins backward at least one turn to release some of the tension. That seemed to help enough for her to fall asleep. Whew!
The next morning she seemed much better. Her surgery was scheduled for the afternoon, so we had time in the morning to get checked out of the Ronald McDonald House and go to the hospital for her x-rays and visit the gift shop (again!!!). Then we went to check in for her surgery and they sent us back for the pre-check stuff and to talk with the surgeons before the surgery. We met the ENT surgeon who was scheduled to do her tonsillectomy and I was able to ask a question about whether removing the adenoids could affect her speech (thanks to Mama Bear - Sandi on my jaw distraction group for making me aware that this could be a problem) so he told me they can do it where they leave a "bumper" behind so kids can still close off the roof of their mouth for speaking. That made me feel comfortable. Then Dr. Gordon came in to discuss his part and get consent, but as soon as he looked at Faith he said he didn't think she needs the chin advancement. He said her growth from the distraction looked great and that he would just remove the RED device for them to do her tonsillectomy and depending on whether the bone was hard enough he might leave it off and we would be completely done! That was such a big change of plans! I didn't want to get my hopes up though cause it was still just a possibility and not definite.
So then it was time to take her back to the OR. We have been giving her Versed (sp?) the past couple surgeries and it really calms her down a lot. It is an amnesiac, so they actually relax and forget going into surgery. I got to start the anesthia again - connecting it to her trach and then waiting for her to go under and give her a final kiss. After that I checked into the waiting room, gave them my cell phone number and went to get some food. I came back and called my parents and then they were calling me back already for an update. I figured Dr. Willging was done with the tonsillectomy but Dr. Gordon walked in instead. He said he took the RED device off for them to do her tonsillectomy and he looked at her jaw to see how soft or solid her bone was. He said it was still pretty soft so we could either wire her jaw shut or put the RED device back on for another week. I opted for keeping RED device on. Then Dr. Willging joined us and said her tonsillectomy and adnoidectomy went smoothly and that he only shaved her tonsils instead of removing them enitrely because he didn't want to get close to the area where Dr. Gordon made his jaw cuts. So that meant she would probably heal faster and a little less pain and less chance of bleeding. He said what Dr. Gordon had done with her jaw was really great and it was easy for him to get into the back of her mouth to do his work. That is SUCH a huge statement for a kid who was born with no room to even breathe!!
So then Dr. Gordon went back to put the RED device back on and a few minutes later I was called back to see her. She looked much more peaceful coming out of this surgery than her last one. We spent the night in the hospital and other than her needing frequent suctioning, everything was pretty straightforward. I talked with the ENT the next moring about her being decannulated in the future and he explained their process to me (slightly different than what I've heard from other families). After she has had time to completely heal from surgery (1-2 months) we would bring her in for a 48 hour observation while her trach is capped and then if that goes well they schedule a decanulation trial where we come in for a night and they take her trach out and see how she does overnight. And if that goes well then it's done - she just goes home without a trach! How crazy would that be? As crazy awesome as it would be, we can't rush into it. I'm pretty confident we can get her capped this summer, but I think we should take it slow from there, actually let her get sick and see how she handles a cold while capped (having a trach sometimes spoils us as we are so used to being able to suction everything out). I know there have been other families and one in particular where they were able to decanuulate their child only to have an emergency situation happen and the child had to be retrached again. And it's much harder emotionally to go back to a trach than it is to live with it longer.
Well, once again I've written too much and now it's very late and I need to go to sleep! Thank you all for reading my long winded posts.
I keep saying I will post pictures soon - hopefully tomorrow!
Robin
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