We had not heard anything about the sleep study results. At first the car seat lady called last week and said we were gonna need to use the car bed because of the results of that sleep study. I was a little crushed over that but thought I'm not even gonna pay attention to this chick untill I talk to the NP from pulmonology. Then the next day the "apnea nurse" from pulmonology called and said this sleep study was worse and we could talk to the NP about it more this week when we had our visit. The apnea nurse went over the AHI numbers (which is like putting a number on the degree of his obstruction) and they were increased by about twenty from the first sleep study done in NICU.
I was crushed. I just soo wanted this sleep study to be better. I couldn't help it. The water works started again. What does this mean for us? Surgery? What would surgery mean? I had heard that would mean a nasal intubation. I started stressing again cause his nose is so little. When we were waiting to see if Bricen was going to need distraction surgery and we were in NICU another mom let me come see her son that had just had the distraction surgery for his jaw done. He was nasally intubated. It looked horrible. And every since I've thought he can't be nasally intubated. His nose is simply too small. haha (I act like this isn't Riley that deals with 1lb babies and has equipment for babies as small as 1lb.) Once again, nurse judgement out the window, in comes mom. I was just tired. I just wanted Bricen to be better. That's all I can say about it.
I called Marty at work. He said all the right things. Sent me a text later in the day with all the right things in it. I think it was later that same night when he got home from work and I'm all calmed down he shared that he was thinking about me while at work. I'm thinking this is going to be something sweet. He says he was thinking about how I sound when I am upset and crying and then proceeds to mock me and says "I'm just so saaad". Lucky for him, I had calmed down and found this just as funny as he did. So that is the joke now, "I'm just so saad." But at that moment, seconds after that phone call, I was. Just stinkin' sad.
So we met with Speech Therapy and the NP from Pulmonology yesterday. Speech Therapy worked us in for another swallow study that same day so that we could see if Bricen was aspirating the thick. Of course, he was. Glad we hadn't continued trying the bottles twice a day for twenty mls for the last twenty days that we were suppose to be doing them. Sheesh. So our new game plan is to try droppers, about five droppers twice a days and then give the pacifier to help him get the food on down. Droppers with even thicker formula. (Of course continue NG feeds). Pulmonology says that they think his eating issues are still because of his small chin (and laryngomalacia can cause eating issues). Speech Therapy says they think it's because of him being premature. I don't know. I guess whatever the cause, the plan of treatment is the same. I'm somewhat relieved to know for sure he is aspirating thickened and have a safe treatment plan. I hated not trying the bottle like they wanted me to (I am a go by the rules kind of gal) but hated even more to risk the aspiration pneumonia.
Appt with Pulmonology Nurse Practictioner. We went over sleep study results. She says even though his AHI numbers are higher and higher than what they were in NICU and higher than his December study (when he was sick) she thinks essentially the December study and this study was the same. (Because of the way they interpret the REM sleep time in there. IDK I don't have to understand it, just need to know the results and have a game plan.) She wants to do another sleep study next week (about 3-4wks from the previous one). I hate hate hate this idea. But I'm relieved because we talked about doing it with the head of the bed up (because when flat his reflux keeps him from getting into the REM sleep they need to study). I'm also relieved because at first when the "apnea nurse" called to tell me results she said she wanted to do a repeat sleep study for 5-6hrs!! NP says probably can just do 4 hrs again.
We also talked about the car seat portion. I confessed my sin, that we had been using the upright car seat for the ride home from the sleep study and the ride to Riley that day and he seemed to do really well in it. She said he desat a little during the car seat portion of the sleep study. I am not putting a lot of trust in that portion of the sleep study results because of the screaming for 15-20min that he did before it. All I know is when I put him on his belly now in the lay down car bed (car seat) he does not seem to tolerate it. When I put him in the upright one he is happy as can be. They still suggest the belly one until we repeat the sleep study. He came home in the upright. If he didn't have the monitor on and I wasn't riding in back with him the whole time I'd never do it. But with the monitors and considering that we go to and from Dr appointments, we are sticking with the upright for now.
On a good note I guess. We talked about surgery and the malacias. She said he is not close to talking about surgery for those two things. So I guess it's good those aren't so bad, the laryngomalacia and pharyngomalacia, that we aren't talking about surgery right away. Hopefully he will grow out of it. She said usually after about four months they start to see slow improvements. Also on a good note, Bricen had started having the bad vomiting/reflux again and she pointed out (and idk why I hadn't thought of it) that he has gained weight so maybe he needs his dose of prilosec increased.
The nurse that weighed us in pulmonary (weight comes up in kilograms) said that's 8lbs. I start to stress because that is hardly any weight gain at all. I do the conversion myself and it's 8lbs 12oz. Idk if people are just too busy, careless, or just stupid. But I'm getting a little over the small stupid stuff. Gonna have to work on praying for help on letting them go. I don't wanna be the mom that chews everyone out.
Of course you love your mommy :)
On the way home from work Sunday night idk how to explain it other then I was just so ready for things to be better. I'm ready. While I'm beyond grateful I can stay home with him and for his progress I'm ready to have a healthy baby. I don't want the majority of my calls in the day to be from Riley or therapy or homehealth. I'm just ready.And with that, I think we are caught up to present day. woowho.
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