Azariahs HOME // Does he need facial reconstruction surgery?

[00:00:00]I've decided older houses are built for better cross breezes. So, this is the newest house we've ever lived in, honestly. Um, and it's built in the '7s, but I think that older houses is in like 1800s, early 1900s. They built them for cross breezes, knowing that you wouldn't have AC. Um, this house, I guess, used to have central air years ago. They saw like remnants of it, but no longer has central air in it. Um, yeah, it's warm and um we are needing to like clean up downstairs in order to get ready for redoing all that type of stuff. Anyhow, so we are going to give you an Aeriah update. He is hanging out here. I put a little sun shade right here, one that you use like for the beach over these windows here to try to get the heat just comes barreling in the slider here. So in the afternoon. So I tried to put Good job.

[00:01:07]I tried to get the um sun shade up here and then he can be good. Nice work.

[00:01:15]Um, so he's actually like moving himself back and forth and even though he can't move his body like he's crawling, he's doing those motions with like part of his body like shifting like this. Um, so anyhow, let's do an Azariah update.

[00:01:33]So, I had given an Azeriah update and then I ended up just deleting it because I gave it. So, right when we came back from our trip, he had an appointment with the people, the sleep study people who um also do BiPAP and that type of stuff. And so, we had an update from there, but then he ended up being in the hospital um like a week and a half later. Um, and so then I immediately did the hospital thing instead of doing that update. So I thought now I'd take the opportunity because it's kind of important what they were saying and kind of give you an update of all of it. So everyone now has spoken and we're trying to figure everything out. So, when I went to a sleep study um when I went to the sleep study area, this new sleep study doctor, I guess he's like a colleague of the person who really really wanted him on the BiPAP and he's like, I don't even think that he needs to be on the BiPAP. And I'm like kind of looking at him, but like waiting for him to like answer himself on why he doesn't think that way. And he's like, so I see like the way his jaw is recessed back. I feel like if we could get him a reconstructive surgery that would bring his jaw forward more that that would just open up his airway and he wouldn't need BiPAP and then later on he wouldn't need um a tracheosttomy most likely like it would like improve his chances of not needing those things.

[00:03:01]So I then spoke to his um complex care worker actually it was weird cuz a couple days later I just saw her like randomly and then that happened again.

[00:03:11]And I saw her randomly again like as she was coming to see me, which is really funny. Um, and so I spoke to her and I said, "What do you think?" Cuz they he told me to call oral surgery and talk to them about it. And she's like, "Well, I wouldn't talk to oral surgery, but yeah, like let's get him." She like took a look at him. Um, and she said, "Let's get him into cranial facial reconstruction reconstruction."

[00:03:41]um and see what they have to say about it. So, we ended up going we ended up going into the hospital because he had pneumonia. If you guys haven't seen that, I have three videos.

[00:03:53]One is when we go to the ER in Maine, then I go to the doctor's in Maine and then I end up taking him down to Boston Children's. So, and I think it's kind of funny because some people are like, "You really need to get him seen by some by someone." like it's like, okay, I've been I don't neglect my children going to the doctors. If they need to go to the doctors, then they go to the doctors. Um, and so obviously children that have more complex issues need to go to the doctors more often. Um, but that doesn't mean that every cough, sniffle, hut, chew, whatever, needs a doctor's thing. Actually, your doctors really don't want you going in for everything because it costs lot lots of people lots of money. So, um you should be able to take care of some of the basic things at home. And a lot of times I really like the portal now because or making a phone call because you can be like, "Hey, this is what's going on. Would you like for me to bring this person in?" And then you can talk to a nurse. They can give you a suggestion. you can talk to whoever and they can give you a suggestion on what they feel is best.

[00:05:05]Um, so I like that and a lot of times, you know, you don't need to go into the doctor because it's a lot of times it's just a viral infection. So anyhow, we do go to the doctor with Ezariah a lot and we go to the doctor for people with diabetes for all their diabetes appointments and all the things I've also seen on here people saying that you know children shouldn't be like that high or that low or there shouldn't be things unless you actually have a child with type 1 diabetes. Don't say a word.

[00:05:39]Don't say a word because you haven't been there. You haven't walked in your sho my shoes. You don't know the difference between type one and type two. Type two, what you do for type two and what you do for type one are two different things. And it doesn't matter what if a child eats this or that, they could react one way one day and they can react another way another day on the same thing. There are some things that hit individual children. One of my children has no problem at all eating oatmeal if it's soaked. another daughter. I give her oatmeal and I double cover her. So, I am giving her twice the amount of insulin that she should get for soaked oatmeal and she will be over 300 in less than an hour.

[00:06:32]It's just different. So unless you actually know, unless you've actually been there, it's probably not the best to comment on things like that. I have, you know, friends that have different children with different disabilities, seizures and, you know, cerebopal paly and down syndrome and those types of things. So, if I've not been through their like specific thing, yes, there's general things that, you know, we can relate to, but if I haven't been through that specific need, I'll just say, "Hey, how can I be praying for you?"

[00:07:05]>> You know, come here, buds. Okay. So, he ends up in the ER and oh, another thing a lot of people are saying not to hit his back so hard. Um, he actually is supposed to he's supposed to have like it's gonna sound like this. My hand's actually like this. A lot of times you can't see it, but I always keep my thumb like this. It's actually a form of chest therapy, and it sounds louder because of the way that I do, but this right here is actually a type of therapy that loosens up the mucus on a child's lungs.

[00:07:41]Um, and I know this one from my other son because we used to use it over and over again. And two, um, I'm at the doctors all the time and we're doing this all the time. Actually, we do such a good job with it a lot of times. The nurse is like, I don't even need to do it. You're doing great. Thank you. That helps me out a lot. So, um, yeah. And also like in here, chest. Yeah, that's just part of what you're supposed to be doing as a mom, as a nurse. I think there's plenty of nurses on here that are going to be like, "Okay, whatever." Um, so yeah, this is what you do. His pneumonia is gone. His lungs cl sounded really clear.

[00:08:27]He has no fever left. He's a little grumpy cuz he wants to go nai and doesn't really know if he wants to go nite. Um, we're trying to figure out what we want to do as far as his house.

[00:08:38]It's really warm. A little too warm for him. And our windows are too small for the air conditioner that we have. So, I've been researching different like standup air conditioner units. So, I just need to find one that's actually good because a lot of times they can grow mold like inside the air conditioner unit um for the standup ones more rapidly than a window box one. So, I'm just trying to read reviews and try to figure out um what's going to be best for us. So, we need to find something there. We could go in the basement. The basement is a lot cooler, but right now we actually don't have any furniture down there because we brought the furniture upstairs to get ready to empty out the basement so that we can um get it repaired. So, that's where we're at. So he let's see. He's feeling better. I don't want to say he's as good as new, but he is pretty well. He's all pretty good, aren't you? So he is pretty good. He's pretty good. Yeah, she's feeling better. So as far as the facial reconstruction, the good thing was is we were in the hospital and because we were in the hospital, I asked the complex care team. I said, "Do you think that we can cuz when you're in the hospital on a normal floor, then you will still be followed by your complex care team. It's usually, I don't know, maybe like four people or so. Um, and they are able to talk to all the places around. So, some cool things happened while we were there was that they um reached out to Cranial Facial and Cranial Facial came in and took pictures of him from all different views. And now we have a followup appointment in just a couple weeks to see how what they think what they think if they think that he should go undergo reconstructive surgery when that would be um what that all looks like. So yeah, uh the complex scare also said if you can get him on by um that's great, but we also understand that we need to like actually get him onto a um schedule as far as sleeping well before we like really dive into that deeply. And they saw for themselves that he is not desing overnight when he feels well. The last night he did not desat at all. So they understand that he's holding his numbers like I was saying at home. So they said that that made that them a lot more reassured. Um so uh what else? So we'll have that.

[00:11:20]Um I can't remember. I don't think I did. So we also had the team come out from um early intervention. They actually finally got approved for the eye coordinator to come out as well. We have been fighting for this for over six months now. But he's going to start eye therapy, which is so cool. She was supposed to come um last Tuesday, which was the day that I actually ended up taking him into the hospital. So then it's going to be tomorrow. Um so we've met her. We've met her, but um she's going to bring out a bunch of stuff tomorrow, which I'm pretty excited about, honestly. um because it's something that I can do.

[00:12:00]Like I don't know how to help him right now. I don't understand how his brain is thinking and I don't know how to help him as far as like helping him to be able to see. And there's I guess there's so many different things that we can be doing, but we just don't know how to be doing it. So, she'll bring tools and um give tips and everything on how to help him. So, I'm really excited about that.

[00:12:25]Um what else?

[00:12:28]Oh, when we were there, um his G tube site looked yucky, which it honestly it looks yucky quite a bit. I brought it up to um GI quite a few times and they're like, "Oh, it's just granulation tissue." It's never really healed. Like, so it's not granulation tissue, it's just like never healed. And so during this stay, they said, "Let's try this cream." And so it's already looking better. It already looks like >> it's not healed, but it's already looking better than it had been before.

[00:13:02]So, I'm really thankful for that.

[00:13:04]>> I know. What you want to do? Oh, you feel the breeze.

[00:13:08]>> You feel the >> We could bring a fan up here.

[00:13:16]>> Oh no. Oh no.

[00:13:20]>> He doesn't know what to do with himself.

[00:13:21]He's like, "Get away from me. Wait, mama. I want you. Get away from me.

[00:13:27]Oh, buddy. You know, we could go sit downstairs for a little bit if you want.

[00:13:37]>> Maybe. I know. I know. So, anyway, that's kind of where we're at. I'm excited tomorrow for the eye therapy.

[00:13:44]Um, then we have like four or five appointments this month. our complex care lady. She just graduated and got her master's degree. So, she can't take us anymore because she can't take people that are out of state in the new division that she's at. So, a little disappointed. We've been together forever. Um, but she said that she found like a really good fellow, which will be good. Um, yeah, it's just it's hard to change. Um, nutrition, nutrition, nutrition. So, he's doing okay as far as nut nutrition goes. We're almost having to switch everything because what happened at the hospital is we got into the hospital and >> nutrition. So, he is eating the same like he was doing before when we got into the hospital. So, we got in and we didn't know that we were staying, but we had enough bottles for like that day and the next partial day. Um, but then they ended up taking them off feeds anyway and then putting them on I IV fluid overnight. Now, they do not cover the formula that we have and they normally do not even cover the prescription formula that he gets, but apparently somebody had like donated a bunch of the type of formula that he gets. So, it was just the bubs, the goats milk formula, like infant formula that we didn't have. So, we were trying to decide like how can we stretch this a little bit further because they thought that we'd be able to go home. And then they're like, "No, we really need to." He was desing a little bit overnight. Let's like push it another day. And I was like, "Okay, now guys, this is horrible." [gasps] We didn't even I didn't even like I had nothing there. Like I'm like I need to make a bag full of stuff so at least I can get changed. I was in the same clothes for three days. Anyway, that's what I did.

[00:15:40]So, I was debating if I needed to go back home, get formula, bring it back.

[00:15:47]Um, and then my friend who you probably remember um the really sweet lady that was um donating breast milk for all that time, um she had an appointment with her son and she was like, "Oh." And I was like, "Oh, let's like." So, we she ca she came and we met up and that was really cool. Um, her son's getting so big. He's so cute. Oh my goodness. Oh my goodness, he is adorable. Anyway, so we got to meet up and chat for a little bit, which was really nice. Um, and she's like, "Oh, you could let me see." She's like, "You could not Uber Door Dash. You can Door Dash formula from Target." And I was like, she's like, "Hold on, let me do it for you." And she just door dashed me in two hours later. The Bubs was at the hospital. I didn't realize you could do that. I never ordered anything. I lived there for 7 months and I never ordered anything. She ordered stuff there all the time and just went to like pick it up. I never did. So, I guess if you ever stuck, you can Door Dash formula to the hospital. She's like, "Yeah, you can door dash whatever you want. You just like go down and meet the guy." And I'm like, "Oh, okay. Now I know. Now I know." But I actually did tell like the staff and stuff that in case there was a situation with other people because I guess more people are using the goats milk formula and it's been very successful. And I don't know [laughter] one of the nutritionists or whatever that was in the NICU, she's actually moved on. So she was down there then to there and she says, "Yeah, I've actually said, you know, I had a family who used this and it worked." She's like, "And it worked for them." So, I really hope that maybe that um maybe the goats milk formula companies can work with the hospitals to be able to get that as something that's covered like within the hospital system for families that need it. That would really be awesome if that could happen. Um but I'm glad that other families have been blessed just by trying out the goats milk. I think it's becoming more like aware. A lot of people are becoming more aware of the fact that goat milk is a lot easier to digest than the regular milk. So, that said, that is about it. So, we're kind of just steady. I have not weighed him.

[00:18:06]I don't want to weigh him actually probably for like two weeks. When he goes back to the other doctors, then we'll see how much he weighs. But, I mean, he was sick. He was and he was vomiting quite a bit and yeah, so I want to just make sure that everything's the best with him and then see where we're at. Anyway, I hope you guys have a blessed and wonderful day and this was a good update for Azariah. I'm so glad that he's home. It's so nerve-wracking with a condition and stuff like this.

[00:18:33]It's like you never know. You never know with any child like they get sick and they might never come out of the hospital, right? And so to be able to just be driving back home to come home was just like, "Oh, we're going home, bud.