Rhett gave me a huge stress factor last night. He has been telling me that he doesn't feel good but couldn't tell me what was bothering him other than a headache. I told him to go to bed and it was like me telling him over and over again. He keeps telling me that he couldn't sleep. Yeah how many kids say they can't sleep in the month of December? lol Well between me and my husband we kept telling him that he needed to go to bed and put on his by-pap. Well he finally did and went to sleep. (On a side note a little about his by-pap it is a full mask that puts about 4 to 8 liters of air into his airway to keep it open. There is a little adapter that his oxygen is able to connect to that way he is never with out his oxygen. At this time he is on 1.5 to 1.75 liters of oxygen.) Well he slept most of the night and I was getting things done like my laundry. lol Well around 2:30am he came out of his room and told me that he was hot, well after feeling his head his belly and his arms I came to the conclusion that he was cool to the touch meaning he didn't have a fever. So I sent him back to bed and and told him to put his by-pap back on and so he did. As I was sitting here trying to figure out why he was not feeling good I decided to check his sats and found out that with his by-pap on and the oxygen his sats were at 92 and dropping. His heart rate was 130! Holy heck what is going on with his little boy?!?! Ok since his sats were dropping rather quickly I decide that I would raise his oxygen. I turned it from 1.5/1.75 liters to 5 liters, and for anyone that doesn't know that is A LOT of oxygen. So he was wearing his by-pap(blowing 4 to 8 liters) and his oxygen(blowing 5 liters). I am sure you can do that math but heck if you can't I will just inform you that that is so much air and oxygen that he was basically breathing straight oxygen. Ok so after I run back to check his machine and he was slowly starting to bring his sats up. After about 15 minutes his sats started to stabilize at 96! WHAT!! 96!! That is so not high enough since he is breathing that much oxygen. CRAP!! His heart rate was still quite high at 119. OK so a normal heart rate would be between 80 and 90, and an infant heart rate is 130. lol At least it has come down a little. I sat there thinking about everything that had happened in that 45 minutes, and almost broke down. How I wish I could cry and get something out of my system, but no if I do that then I am not sure if I could stop crying. I was sitting there thinking that if he dropped again I would have to call 911 since there is nothing more that I could do. I had to prop up his bed and everything. Finally he slept and was sating at 97 and his heart rate was finally at 87!!! YEAH!!! No 911 call unless he bottomed out again. I tried to get tired but all that adrenalin was still racing through my body and it took a while for it to all get out. I wasn't able to sleep until almost 4am! Oh man I have to get up at 6 to get everyone ready for the day. :( This really sucks! Well Nikole woke me up at 8 am that is the time school starts!! Oh crap!! Well since my husband didn't have to work, of course he didn't get up until he wanted to. So I threw a coat on and my boots and luck for me Nikole was already dressed so I raced her to school and then came back home to get all the other boys ready for the day. I told Rhett that there was no way he was going to school today because of his oxygen issues. He really didn't want to miss today just because it was a Christmas party day. Oh well health first! I called the doctors office right before the doctor would be there and let the nurse know what had happened and asked her to relay to the doctor everything that way they could tell me what he wanted me to do. Well the doctor told me that I needed to come in today and have Rhett checked out. Ok well I wasn't going to make an appointment and then wait all day that would be dumb! So I just took him about a hour after they called me and told me to bring him in, they just worked him in. LOL It is great having my kids because most of the time I can usually just walk in and they will work my kids in since the boys need to be seen when they need to been seen. Well he sounded fine according to the doctor and so he wanted to take an x-ray and that came out crystal clear. FINALLY!! The doctor is understanding that the PFT says that his lungs haven't grown in 3 years, and he is finally getting the info and realizing that not all of Rhett's breathing problems are asthma. YEAH!! I have been praying that someone would come out of denial soon, because I hate being the only one not in denial. Well he said that he would contact the pulmonologist and the cardiologist and have to have a meeting with all of them in the same room to determine what needs to be done for Rhett and the best things for him. Oh the drama!!! Now that doctor wants me to keep giving him breathing treatments even though Rhett looked at me this morning and said "You know mom, this doesn't help." surprise that he knows his body and knows that he is not having asthma problems. As always he and Dylan are medical mysteries.
Well Nikole went to school and had to sit out on fun Friday since she didn't behave very well the day before. She was not happy and told me she had a very bad day. Well of course you did but who's fault is that? lol She needs to learn to behave in class at all times, not just when she wants to. She has been crying often recently because kids in her class have been calling her names and making fun of her. Oh this is making me so mad! But when I talk to the teacher she told me that she would keep an eye on things and try to help remedy the problem but one thing is that Nikole still acts different and so the kids make fun of her. So I am trying to teach her that she has to change her actions that way the kids won't make fun of her for that reason. I feel bad and I wish there was more I can do to help her more. If things don't get better I just might go in an tell these kids that they had better knock it off. I can only take so much and I know that Nikole is going through a lot having to deal with things of this nature on a kid scale and I know that there are no other kids at that school having to deal with anything like what my family is going through. Thing have got to be so hard on Nikole, Rhett is like her best play mate ever!! I have pictures of them playing together and being the best siblings to each other. Before we moved into our house we lived at a duplex where there were no other kids to play with so they only had each other. Here is one that I love and will treasure forever!
They were watching Claymation Christmas, and enjoying each other. I really hope that she will be ok and I pray every day for my little girl, she is so very special to me! I am crying as I write because I know that she is having a hard time and there is NOTHING I can do to help her. :( Her and Rhett have almost always been buddies, through good times and bad. I love you Nikole!!
Gavin refused to take his antibiotics and hadn't completely recovered from strep so he didn't even go to school this whole week. Man how I wanted to just send him, but I was a good parent and kept him home when he was feeling sick, so that way no one else got sick. But he will be going back starting in January. He can't be sick for too much longer. lol I some times think that he wants to be but after staying home being bored he misses school, guess that shows him. :)
Dylan is a walking machine, and getting better everyday. Recently he has tried to run. LOL!! He is just so dang cute! I love the fact that he is so small and can be wearing about 6 month cloths and be walking around in them, it makes him look so cute since baby clothes are way cute anyway. He has also given a shot to jumping, that is so funny because he will move his body up but his feet stay planted on the floor. He will do it again and again because I think he thinks he is actually jumping and it is so funny to watch. We are still trying to get him to communicate with us and it can be so very hard at times. I sure hope he starts picking it up soon. It would be nice to be able to talk to him and have him talk to us. :)
As for myself and my husband we are still doing everything we can for our kids. Working on stuff here and there. Trying to figure out things before too late. Just living from day to day not knowing anything and that really sucks. It would be nice to not be the only one facing what we are facing head on but maybe this is the only way that he can keep going. I hope that he will be able to face it and know that it hurts but also know that the Lord is very aware of what is going on and will provide comfort when called upon.
I wish you all a very Merry Christmas and a Happy Holidays!! Don't forget the reason for the season.
No comments:
Post a Comment