I wrote out a VERY long post about everything I have forgotten to update on here (because I forgot to post, there's been lots going on) and somehow even after I saved it, my post magically disappeared into Blog-land. So let me try this again..
In February we got the official go ahead to begin weaning Gavin off of his CPAP during the day. We met with his pulmonologist and he said that Gavin's breathing looked great and that he believed Gavin was ready to be weaned off of his respiratory support. We started at 15 minutes twice a day and every 3-4 days increased his time off by 15 minutes. So first few days were 15mins-2xs/day, then 30mins-2xs/day, and so on. Once we got to 2hours twice a day and did this for 3-4 days with no issues, we got the okay to keep him off the CPAP all the time during the day! And after 4 days of him being fine off of the CPAP, we could take the pulse ox off of his foot and only spot check him every once in a while. Gavin did absolutely amazing with his wean, no issues whatsoever! And he is now off all day and is only on the CPAP while he is asleep at night.
Gavin had his first Day Med pamidronate infusion from March 4th-6th! It was much more fun than NICU infusions! We got to spend time with the other OI parents that were in Day Medicine with their little ones, and we even got to spend time with a cute little guy names Isaiah who has the SAME EXACT genetic mutation that Gavin has! (A little background: From what I have heard, there are around 10,000 different mutations that can lead to a person having OI. There are many different "types" of OI and Gavin has type III. But not everyone with type III has the same mutation. When we got the amniocentesis done, our results said that only 2 other people had ever been diagnosed with his specific mutation. Well, as it turns out there was another little boy born around the time that we got our amnio results that had the same EXACT mutation. So that means that Gavin and Isaiah represent half of the known cases of their mutation. And they are about 4 months apart in age. AND they live about an hour from us. CRAZY, right?!?) Gavin's pam infusion went great! The nurse got Gavin's IV in on the first try and it worked for all three days of the infusion. A lot of times children with OI have trouble getting IVs in and working because of their anatomy, and even if you get it in the first day it isn't guaranteed to work for the entire time you need it. So many children get a port placed into their chest to make getting infusions and blood draws easier. This is something we are considering getting for Gavin, but it depends on how easily the IV continues to work. 
Bottle feeding has been a bit of a slow process, but progress is being made. He was for the longest time only drinking about a half of an ounce, but the last 4 days or so he has been averaging an ounce with every bottle. It may not seem like much, but because Gavin has OI, his total amount per bottle is 98mL's, or a little over 3oz. We are hoping that soon Gavin will be taking enough by bottle that we can get rid of the NG tube all together! Speaking of the NG tube, Gavin has discovered his face and therefore his tube as well. And he has become a pro at sneakily pulling his NG tube out the minute I walk away! Daddy and I have become experts at putting the NG tube back in because of all the practice he has given us!
Gavin is transitioned from his car bed to an actual car seat! We waited until the physical therapist was here to help us, but we put him in it and he was so comfortable he fell asleep within minutes! His heart rate, breathing rate, and oxygen levels all stayed perfect while he was in there, so daddy and I decided it was okay to switch, and he has been doing great in the car seat ever since!!
A few other fun things: Gavin is smiling and cooing, he is now switched to cloth diapers now that I feel comfortable moving him around, and big sister Ayla loves her little brother to pieces!Now for an update on Ayla: She is now 2.5 years old and this is SUCH a fun age! She is speaking in sentences now, she is able to express to us how she is feeling, can describe objects to us, and is saying new words all the time! It's just an amazing thing as a parent to watch your child flourish! I LOVE it! She is so active and loves to play, and she can't wait until it gets warm enough to go outside! She loves everything Disney (of course including the new movie Frozen) and she loves to sing and song from any Disney movie. She has decided that she no longer needs to sleep, which leads to one tired mommy, but I just can't get enough of her!
So tomorrow night we are heading to DuPont to get a sleep study done for Gavin. I am hoping that the sleep study will show only good things and that we will get the okay to wean him off the CPAP at night!
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