Long over due

It has been a crazy month for us and without me being able to get it all down earlier I hope I can remember it all.

Well on the 3rd of November we had the care conference for Rhett. We met with 5 doctors including the cardiologist, genetic doctor, orthopedic surgeon, the pulmonologist, and the pediatrician. We also had the school district nurse, and case manager for IHC that we deal with a lot. There was a conference coordinator and us as his parents. I was thinking that we would have only talked for a half an hour since one for the doctors was available at 11 am but not available at 11:30 am. But it didn't go for only a half and hour it was a hour and a half! I was so happy that we were able to get so many thing talked about.
These doctors actually care for Rhett and want the best for him which is wonderful. They did find out that he has no signs of pulmonary hypertension while he is at rest. The pressures in his pulmonary arteries are in the normal range, the high end of normal but normal none the less. Which is great but not great at the same time. That means when ever he exercises of himself in any sort of way, example: walking up stairs, walking through the school, walking at all will elevate his pressures. More so than it would be of a normal person. He is unable to get off oxygen ever where we are at. They would like for us to be able to check him at sea level to see if he can come off of oxygen there. Well that is something to think about. I think it is time that I look into visiting my sister with Rhett and that way I will be able to check Rhett and get more info for the doctors and us. There is no reason that he turns blue even on oxygen but he does. He is still growing as far as the doctors can see, but they are going to keep a close eye on him. There is nothing more that the doctors can do for him that they are already not doing. They suggest that we keep the surgeries going and more tests so that way they can make sure everything is helping him. Which is a sign of relief so that the doctors will have more info to be able to help them with Rhett's care plan. They believe that the surgeries are helping him but I am not so sure. The prognosis of Rhett is still unknown, but there is a chance that he might be able to live with what he has for a while. I am still not sure if I believe them. Rhett has had his hearing aid fixed finally and was way excited to get it back. He is doing well in school. The PE people with the district have been out to see if that can help with Rhett's PE time. They have rigged something up for him to be able to have PE and be free to move without being tethered. He is so excited, but we are still looking at it to make sure it will not hurt him.

Nikole is doing well. She has been told that if she does he homework on time then she will be able to stay in the after school program since she loves that so much. She is still learning that throwing fits is not acceptable. Lucky for me it only happens every other day. LOL! Ok maybe less than that but still, it is frustrating. She is very smart and is shows often. She is great help when she wants to be. Lucky for me she doesn't need to see the cardiologist for another 2 year if I remember right. :) She did have 2 small cavities and had them taken care of at the dentist. She was a super brave girl and held really still and handled it better than some adults. She is getting her homework done more on time than she used to which is GREAT!!! I am so happy that she is doing that much better.

Gavin is doing great in school and even at home he is helping more. He loves playing with Dylan and it is great to see them play so nicely together. There are sometimes that he does pick a fight with his siblings but most of the time it is provoked. :( We have been working on earning game time as a reward to good behavior. Sometimes it works and other times it doesn't work. He is very smart and loves doing homework! I know can you believe it??? Well he does! He loves coming home on Monday and doing it almost all in one day and then he asks me if he had earn game time. :) LOL! Can't see where his mind is huh? We read almost every night before bed. We do read a lot during the weekend. At least a few hours every day Friday, Saturday and Sunday each. He loves going to church and being reverent and kind towards people in church which I have waited for forever. LOL! Ok not really forever but for a very long time.

Dylan is doing well and loves learning. He is signing more which is great!! It is nice to be able to communicate with him more. He has had several ear infections and is dealing with one now which makes me sad to see him suffer. We are suppose to see the ENT but heck he is all booked up for a very long time. I guess we will have to wait and see. Poor kid he seems to have a knack for getting in trouble and also to hurting himself. He is going to be 3 in a month and a half I cannot believe it!! The doctors are fighting for synagis for him. Which are shots to help prevent RSV from being very severe. I pray that the insurance will cover the shots and approve them for him. It would be a whole heck of a lot cheaper than a hospital visit.

I need to tell Les that I am ever so grateful for her and the help that she has giving me. She is such a wonderful woman who is one of the greatest of friends. Yes I am getting to bed earlier thanks to Les!! :) I will be able to update more often thanks ot Les also! So happy!!! :D

Nikole's attack

These are the pictures that I got the morning after the attack. Nikole is feeling better but still sore. There are even more in her hair that I couldn't even get a picture of since she has so much hair. :)

A little blurry sorry.

Claw marks in the hair.

Puncture marks all over the head from the claws.

More cat scratches in the hair that are different from the first one.

Bite marks. OUCH!

This I think are bite marks and not scratch marks cine they are bigger than the scratch marks earlier. These bleed so much!

More scratches. Glad it missed her ear.

More puncture marks.

HUGE scratch marks. These were really bloody and she did say that this one spot hurt really bad, but not the worst. Missed this ear too, thankfully.

Bite marks and scratches so grateful that her eyes were not hurt.

Scratches all down this side also.

This is the one that hurt the most. A HUGE bite mark that thankfully missed her eye. This was the one that bled the most. Huge drops of blood running down her face. Thankfully didn't need stitches, since this was the one I was worried about the most.

Scratch marks on her back.

Bite marks on the left shoulder.

A nasty bite mark on her shoulder with some scratch marks too.

More bite marks and scratch marks.

Scratch marks on her tummy.

Nasty scratch marks they were kinda deep.

Lots of scratch marks on the other arm too.

Can I scream please?

Well we had a few appointments today. Ok just one and then a drop on a doctor that didn't have the results for us when I thought he would. Wow am I jumping around??? Let's just back it up a little. Rhett and Dylan had an appointment to see the orthodontist this morning and we just made it but then the orthopedic doctor wanted to see us before he left the hospital at 11 am. What!!! It was only 10 am when I found that out as I was flying to get there for the appointment at 10 am. Ok so we get there and Rhett was seen as it was nearing 10:30 am... I am totally feeling under the pressure to get upstairs to see what the orthopedic doctor has to tell us that he should have told us a week ago. Great next it will be Dylan's turn and we will miss our shot at meeting the orthopedic doctor. :( All of a sudden the orthodontist had to go into the OR for a patient that needed something from him. YEA!! That means we can run upstairs and meet the other doctor. So we head out and make a break and let them know we will be right back. So we get there and have them tell the doctor and his assistant that we are there. She comes to get us and told me that we was just about ready to walk out the door to head the the lab or where ever he was going. Yes!! That means we get to see him and get the CT results that we were suppose to get like a week ago. Can't wait to let them know that the surgeries are not helping and then see where that takes us....
Uh NOT! We found out that they got the lung volumes for both Rhett and Dylan but,...
they don't have anything to compare it to since they don't have the results from Rhett's previous CT scans.

WHAT!!! Are you kidding!!!
This is a hospital you would think that they would have something that told his lung volumes since he has been having surgeries for 6 years and CT for about 3 of those year I do believe.

Holy cow now what???

Well he is scheduled for April 1st for now but I am researching to see if I can come up with the lung volumes that seemed to have never appeared or disappeared. I did ask him,

"If we do the surgery on April and you have to revise the left side and expand the right, than we will need to get some more PFTs and have another CT done in September to see if things have changed because if they haven't..."
he answered,
"We are no helping him. He has the biggest devise so he can't get a bigger one."
BINGO! He wins the prize...



So that is the plan for now but heck I am still trying to track down some paper work so that I might be able to spare us going through the hoops. He totally agreed to my terms on the surgery but the worst part is that Rhett was there playing around and so was Dylan.

After the meeting with that doctor Rhett turns and looks at me and says, "Mom what is going to happen to me?"

Even writing this now it makes me cry. I have no answers to give him and neither does the doctors.

How do you inform you child that the doctors can do nothing to help him continue to live and he will die? In my gut I have felt this way since October and now the doctors are finally starting to catch up with me. But there is nothing I can do until we can prove that the surgeries are not helping. So I feel like I have about 6 months to come up with a good way of letting him know and then just living life to the fullest.



After that meeting we headed back downstairs to have Dylan's appointment with the orthodontist and that came out as ok, nothing that he can do now but in 1 1/2 years he wants to start expanding Dylan's jaw.

My sweet boys! You go through so much to help the medical professional learn. I love you both with all my heart and as I pray to find peace and knowledge I know that there are many other there that love you too.

A new week

Well this is a new week and a scary on at that. Sent Rhett back to school and man I am nervous! The thing is he is on 4 liters and refuses to take his concentrator so he has to have his oxygen changed as soon as it runs out. Oh the stresses! I am so worried... he had a very hard night last night and still woke up early but then fell back asleep just like I did. LOL! Ok so because his machine is beeping all night it keeps me awake. So of course I don't get a lot of sleep and neither does he. What a life! We are both not sleeping but I know that if he doesn't wear the mask that he is suppose to wear at night the doctor said he would end up with a trach and on a respirator. Just the thought makes me cry! What can I do as a mom to help him. I did explain it to him but he is moving around so much in his sleep that it is making me crazy. Thinking of moving for better air quality but the doctor told me that the altitude would make it harder for him to breathe. So should I make him stay in the worst air in the nation or try to get us to a safer place to breathe? hummm... The choices. I feel so torn.

The teacher called to let me know that he had changed the oxygen and it helped me not stress so much, but with these bad nights that he has had lately I can't help but stress even if it is a little. Last night was really hard his machine just keep beeping at me and I am so seriously about ready to put an ax in his dumb machine and get a new one. Holy cow I can hear the machine in my room from his room and that is listening to a movie too. It wasn't that loud but each time I hear that machine I just wonder what is going on with him. He woke up at 3 am and decided he was finished wearing his bypap and put his oxygen back on which I was grateful for. Oh well at least he had his oxygen on. It is hard whenever we go any place we are carrying around tanks of oxygen since he doesn't like his concentrator anymore. Oh that reminds me I need to check on a different one. Oh the things I have to do...

Nikole has been crying every night because she misses Rosa. We dropped Rosa off at a friends house on Thursday the 7th and Nikole misses her so much. I miss her too since she would cuddle with me after all the kids were in bed. She asks everyday if she can go see Rosa and usually it is night so I have to tell her no but I hope it can become a usual stop to see Rosa since the doctors told me that the cat cannot come home. Oh heck! The things that my children are missing out on. I wish I had a room that wasn't part of the venting for the house and was shut off or even another house that was Nikole could have her cat there and take care of her and play with her every day and the dander wouldn't bother Rhett at all. That would be the most amazing thing ever! I just now have to think of to get her this birthday for taking a birthday present away from her. If you have any idea I am so open for ideas.

Gavin is doing so well and is expressing himself more nicely and with words then he use to. He is growing up so quickly. :( Make me so sad because I miss my babies! He did a sharing time with his class today and loved every moment! He was so happy to share what his family does with his class and they asked great questions and was very polite toward him. It was so cute to walk into his class and seeing all the kids doing the chicken dance and then isty bitsy spider and then head shoulder knees and toes. Kids can be so cute when they are all playing and having fun. So glad that he loves to go to school and has some friends there too. :) He loves telling me about his day and for that I am grateful that way I know what he is learning.

Dylan is waking up way too early like Rhett but then I get to put him down for a nap at 9 to 10 am. It is great! :) He was trying to sign a few more signs today and I understood him! I know I am shocked! But it isn't a bad shock. He loves playing and getting attention. I just love his smile! He looks so much like Rhett did when Rhett was little. But he is growing up and I miss having a baby! :( Not a good thing. I am grateful that he is starting to want to communicate more. We will see what we can get done tomorrow since he likes to be a big helper and that isn't a bad thing it is just cute to see him help mommy. :)