Only a month away from being caught up! Yay. January has been a series of follow up testing and appointments. I take lots of random pics of Bricen. Pretty much, if it's an outfit he hasn't worn yet I take a picture of him. We have already packed away what seems like a lot of clothes. We don't go anywhere but Dr appointments. I realized the other day that he was going to have a lot of clothes that he will have grown out of and has never gotten to wear if I don't start dressing this kid in some actual outfits while here at the house. Sleepers just seem so much easier., even for Dr appointments. They keep him warmer because pants legs aren't coming up and until recently zippers were rough because of him laying down in the car seat. This was on the way to a follow up appointment. January 3rd. Very mismatched but still so cute, if I do say so myself :)
Bricen loves watching TV. I already feel like the bad mom that lets the kid watch too much TV. But if it makes people feel better Bricen doesn't do anything for a long period of time.
Between tube changes. I honestly do think his chin has grown.
This was before the swallow study. We failed the thin liquids. Didn't really get to try thickened because by then he was so hungry and ticked he wouldn't even try the bottle. I was more than disappointed. I thought because he was doing so well with the pacifier we would have good results. Once again, wrong. :) They tell me they are totally different. Despite not really getting to see if he was aspirating thickened, speech therapy wanted us to try up to 20ml of thickened twice a day.
Although I didn't feel comfortable we probably did this a total of four times in a month. The first couple times he was just ticked because he couldn't get anything out of the nipple. He worked for about 15min and got three mls. I tried the Y cut nipples and at least he was able to get something out but there at the end he would cough and gag, etc. I ended up telling her that he was gagging and coughing and we just didn't feel comfy doing it until we were able to get another swallow study.
This is a bad picture quality but it does a good job at showing how he hyper extends that neck in order to open his airway. This is one thing that OT/PT is going to work with us on. We still want him to be able to breathe, but want him to be able to hold his head right once that airway is corrected or gets better.
Just seeing if he was big enough yet to wear the onsies. Of course, we had to be fair and check on both Purdue and IU. Bricen hates it when I try clothes on him but how else are we going to know if he is big enough to wear certain things yet?
This was towards the beginning of January. The hand is a blur because he moves his hands and legs pretty much non stop now.
This was also the night before the sleep study. I had been praying like crazy that he would just sleep for this study so we could get some quality results. I was trying to keep him awake a lot that night but of course of all nights he wanted to sleep. Stinker.
Jan 17th, day of sleep study and bronch. We just hate sleep studies. Bricen did sleep for this one.
This was the first time I have been disappointed in Riley staff. Everyone so far had been great. Even the NICU nurse that looked like she was there for the Miss America pageant every stinkin' shift she worked (come on nurses, everyone has a hair up day every once in awhile) that I tried to hate but couldn't cause she was so stinkin' nice. (Give me a break I had just had a baby, highlights had grown out, wearing sweatpants most days, etc etc) :) :) This staff was ridiculous. They kept making a big deal because the rail of the crib wasn't up. In my world I went off on her. Brianna says I was too nice. I think it's the most upset I've ever been with a stranger. By the time I got done telling her how I felt I was shaking from head to toe. I don't even remember what all I said I was so frustrated and talking so fast.
Keep in mind how horrible the last sleep study was so we had some anxiety built up before this one. We had just had the bronch done and told he does have the laryngomalacia and pharyngomalacia so my mind is on that. Just thinking what that means to us, for us, etc etc. Bricen is having a hard time falling asleep and staying asleep (although ten times better than the previous one-Thank God) so I have the rail down patting his bottom, etc. They kept coming and putting it back up saying it was "hospital policy". I said Ok, but if I need to get to my son I'm putting it back down. And I did.
About the third time she came in to put it up I'd had enough. I just let her know that this was the third sleep study we have had and each time about three people work with him during them. That makes a total of six previous people that have not had a problem with this rail being down while I was standing by it yet they were making a fuss about it and if they wanted my son to sleep for his sleep study I was going to need to be able to get to him to comfort him. I was nice and said I realized she was following her "hospital policy" (because she'd told us ten flippin' times) but this was ridiculous and someone was going to hear about it. I ended with saying "It is a rail" about three times. Funny thing is, as she was leaving I was already feeling bad (tough as nails haha)and I thanked her as she was leaving. Brianna and I had a good laugh over that later. I'm sure you can all figure out what I'd like her to do with her "hospital policy".
Then it was time for the car seat portion of the sleep study. The CO2 sensor had come off. And it took these girls a good 15-20min to get it figured out and positioned just right. The whole time Bricen is screaming. Probably not going to get quality results after that now are we? No. Maybe they should study those hospital policies a little less and spend more time figuring out how to trouble shoot their equipment. And when the gal went out to get someone (who I assume had more experience) to help she said she thought he was trying to "wean them" on their own. Then there was the fact that he had to go from his back to his belly (instead of back to side so that we are making a smaller move and hopefully stay asleep) even though they couldn't give me a medical reason why. I could go on and on but I just don't want to. We will just say it was a whole lotta ridiculousness and at my son's expense. And unfortunately it's not the last time we will be there. I'm gonna try to put it behind us and move on. Mostly because it still ticks me off to talk about it. 
No comments:
Post a Comment