EDAC Evaluation: After an extended stay in the NICU, the hospital will schedule a follow up appointment called EDAC. Don't ask me what it stands for, I have enough acronyms to remember so I haven't bothered to figure this one out. I just know it's a follow-up where a nurse, dietitian, a few therapists, a doctor and a social worker come meet with us and see how things are going post-NICU. Everyone was really nice and totally enamored with Ryan. He was such a trooper through the whole thing considering he wasn't allowed to eat because of the Mic-key button procedure we were heading to next. The physical therapist and speech therapist (yes, speech therapists meet with babies, too!) sat with him on a mat on the floor and brought out a bunch of toys for him to play with. His motor skills have actually been improving a lot lately...he loves grabbing his toys and bringing them to his mouth or passing them back and forth between his hands. So, for his physical abilities, he scored at the range of a 1 month and 20 day old baby. He is just over 10 months (so 6.5 months adjusted), so that's a pretty significant delay, but we were expecting that. It also helps him to receive more early intervention support services from the Regional Center. The great news was his cognitive development. I expected this area to be about as delayed as his physical development, especially considering that we don't know how much he can see, and we know he has hearing loss in both ears, but he scored at just above 4 months old! That puts him only 2 months behind his adjusted age, which is amazing considering his handicaps. I was so proud of our little smarty pants! The doctor was very impressed by his chunky rolls and chubby cheeks. Basically, we are doing everything we can for him right now, and they want us to continue with the feeding and physical therapies and come back for another evaluation in 6 more months to see how much he improves. I feel like he hasn't really had a chance to really soar since we've been dealing with so many little "fires" since he's been discharged from the NICU, but hopefully things will settle down and we can focus our attention on his development.
Mic-key button procedure: After the EDAC, I rushed Ryan in his stroller over to CHOC to check in and prep for his procedure. They knew we had this appointment and would probably be late, but I don't think any of us realized it would make us a whole hour late. But it all worked out fine. The doctors and nurses went back and forth on where the procedure would actually be done since we were also having an audiologist come in and do the rest of the ABR hearing test while he was sedated. It was all supposed to go down in the GI lab, but they ended up using a room in the SSU (Short Stay Unit) instead. The GI portion of it really only took a few minutes. They took out his old g-tube and put the mic-key button right in the same hole. They used an endoscope to see where to place it in the stomach, so before they started I asked if he would check for Ryan's left contact lens while he was in there. I'm not even joking. That thing has been lost since this weekend and we cannot find it anywhere. I literally thought late the night before that he might have swallowed it. I told Dave, and he didn't think I was nuts, so I figured it couldn't hurt to ask! It was the first time I'd seen this very serious GI doctor laugh. He even came to me after and said, "I'm all done with my part. Oh, and there was NO contact in there!" Hahaha. But yeah, bummer. Still don't know where that stupid thing is.
ABR Hearing Test: This part of the day was a hard pill to swallow. I think I took this news even harder than when they told me we were getting admitted for the night. Basically, the director of audiology came to do Ryan's exam because when I was calling everyone on that wild goose chase to get them to do the ABR during the mic-key button procedure, she was the highest up person I could talk to, and she was the one who gave the final OK to make it happen. But then, since it was scheduled on a day that they don't normally have people doing tests at CHOC, she decided to be super nice and come over and do it herself so it would get done. Unfortunately, she did not have good news to report. After around 45 minutes to an hour, she finished the testing and found that Ryan does in fact have profound hearing loss in both ears. I asked her what that meant, and she said basically most people would label him as deaf. She tested him up to 95 decibels in both ears, the equivalent of being at a rock concert, and he did not respond. They have nodes reading his brain waves, and there are supposed to be waves and hills on the monitor, but he had a flat line. So then I asked if it was definitely his ears, or if it could be related to something in his brain because of the mild hydrocephalus. She said that was a good question, but didn't have an exact answer. She said the nerve in his ear doesn't appear to work, and his brain doesn't respond. So of course I still have a LOT of questions. Her next step was to refer us for Early Intervention (to which we've already been referred) and to get us in for an appointment to get fitted for hearing aids. But, we confirmed what we had been told was likely the case, that hearing appointments/hearing aids are not covered by insurance. There are grants available, and maybe we will be able to get some help from the regional center, but I need to look into this first before we proceed. She didn't sound very convinced that hearing aids would help him, and she told me to be prepared for him to not be able to speak normally. We are fine with all of that, really. I think it will be very fulfilling and rewarding for us to learn how to communicate as a family through sign, and I know that Ryan can still have a very happy life without hearing. I also know that he will be a candidate for the cochlear implants if the hearing aids don't work out for him, so there is still hope for him to hear. She just made it sound so final. I guess I don't know where I'm going with this other than to say we are still at the gathering information stage. Our next step will be to talk to our pediatrician for a referral to an ENT and then we will go from there.
The Hiccup: All of that sounds well and good, so why in the world did we end up in the CVICU, right? Well, during the time Ryan was sedated, they had him hooked up to an EKG. I'm not sure if that's standard protocol or if they decided to hook him up based on his monitor readings for his sats/heart rate/blood pressure. The EKG was abnormal because he had an ST depression (I had a VERY crash course in cardiology today, so please forgive me if this doesn't make sense. I'm not quite sure I understand it all myself). Once they saw that, they ordered an echo because he has a history of heart issues with the pulmonary hypertension. The echo looked completely normal, but being the overly cautious doctors they are, they couldn't just ignore the fact that this EKG was abnormal. So they did one more and it was still not quite right. That's when they told me the news that we'd be spending one night at CHOC. They were hunting for a room for us, and I was really thankful we got to be in the CVICU rather than the PICU where there are sick kids with RSV, but man, it was very humbling to be in that unit. Actually, I have to say, it's humbling to spend this much time in a hospital at all. I could write pages about the things I have seen that have made me realize how truly blessed we our to have our two little miracles. It almost makes me forget that Ryan has so many issues because honestly, I've seen way too many families standing outside of hospital rooms crying onto each others' shoulders. I see that, and I instantly feel so much gratitude and relief, and it's like all his little issues just disappear because at least he is alive. Anyways, they checked us into the CVICU, Dave brought Dani to the "hosibal" and we switched off so he could see Ryan and I could take her out to dinner (the hospital is on lock down for flu season and isn't allowing anyone inside besides patients and their parents). Then I went back to switch again and spend the night. They did another EKG and it looked better. I thought for sure we'd be able to make it to our 10:15am feeding therapy appointment the next morning. Then when we woke up, they did another EKG. This one showed the same ST depressions that they saw yesterday when he was sedated. So, that bought us some more hospital time. They needed to draw blood and run labs to check his troponin levels. If they were elevated, that would be a sign of something more serious. If they were mid-range, we'd have to stay longer so they could do another lab the next day to see if they were trending up or down. If they were low (they are supposed to be 0.3 or lower), then we could go home. The labs finally came back after lunch and his level was 0.2, so that was great news!! Of course, then they couldn't let us go until they talked to the cardiologist, and they told me they wanted to get one more EKG to be sure, etc. but thankfully our cardiologist knew how much we wanted to get out of there, so she came by and said we could skip the last EKG and just follow up with her in 2 weeks. I packed up so quickly, they didn't make me wait for the volunteer, they had a nurse walk us down instead. Of course, in my haste I forgot to get some of the frozen breast milk we had there plus the disc of the head ultrasound I had walked over to radiology to add to Ryan's records so they'd all be in one place. But, it's ok. Dave's bringing him back there tomorrow for our second attempt and his first feeding therapy session.
Sorry that got so long, but there was lots to update. There's more I still need to share about the neurosurgeon and some other things I learned about cardio, but I need to head to bed. Thank you all for the prayers you sent Ryan's way the past few days (and always). Tonight I'm asking for prayers to be sent to the families still at CHOC. I actually feel guilty when I get to walk my baby out of that unit and go home. We definitely had our fill of hospital time, but I guess it makes you more sympathetic to those who aren't able to bring their little miracles home yet. My prayers are with them and their families.
1 comment:
Prayers to your family and also those at CHOC. Hope all of the little miracles get to go home healthy and happy! Love to you, Aunt Linda
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