WHAT!!!!

Took Rhett to the post op appointment and met with the surgeon and ask questions. Rhett's big question was why am I still numb on the left side of his abdomen. :) It is really bothering him, anyways the doctors response was "I don't know." What!!!! Why can't you know that? You were the one that cut him open...

So my questions were a little more involved.

"Why was this surgery more aggressive then the surgeries before?"

"We are trying to get lung volume and if we don't get it we will stop doing the surgeries. Are you all signed up for the next surgery. Make sure you do that."

In my mind I was like you are never touching my kid again.

Talked it out with my husband and we are both going to try to get all the important doctors together and decide if it is a good idea to do more surgeries or just to stop and the affect that it would have on his life and what we should probably do as a family to help all of us get through this year and maybe even next year.

He has healed well even though this last surgery was really hard on his little body.

The doctor is think about being as aggressive or even more so the next surgery so I am really not liking the idea as you can probably tell.

Nikole really wants to go to summer school and I am not sure if I want her there, but not having to worry about her for half the day for a month sounds pretty good and it would be nice if she were able to play with her friends and stuff.

Rhett would love to do that but can I trust them with his oxygen needs and all that other medical needs that he has? Still pondering that one.

No idea

It is the end of a week and almost the end of a month. The kids are well... I can say that now we will see what happens in 6 months. Things are going ok, but something weird happened to me this week that I forgot about until now and I was like I better write this down.

I was walking with my family (I don't even remember the place that I was at) all of a sudden it was like life slowed way down it seemed like I needed to remember this moment forever. It was also kind of like deja vu from my childhood. I couldn't believe it! I need to remember that very moment for some unknown reason. I pray that I have the ability to do so.

Thank you Angel's Hand Foundation for the wonderful Saturday the 17th of April!!! We all went to the zoo and we had a great time thanks to them. Now we can go back every single day we want for a whole year. So very grateful for the fun things that we are able to do with great people knowing that my kids are going to have a great time. If you want more info on their foundation you can access it online at... http://www.angelshands.org/ They are wonderful!!!

They take kids that are special needs with rare diseases and their families and do fun things with the families to help them deal with everyday life. They are such an amazing group that we have been with for going on 3 years maybe.

Harry Potter

Nikole started reading the books by request! I know I was so excited since she is only in 2nd grade. Reading a 4th grade level is amazing!!! There are a few words that she gets stuck on but for the most part she understands it and is really enjoying the books. She is almost through the 2nd book and she didn't even start that long ago! I am really proud of her for having that drive to be able to read and understand all that at this young age.

Gavin has been doing so well in school and the teachers think that he is doing great!! He know how to write all his letters and numbers in his name and phone number. He can even recite all the numbers when mixed up and all the letters. WHAT A SMARTY! Just in this last 2 months he has improved so very much that the teachers and us are so proud of him. One more month of school!

Dylan is trying so hard to communicate with us. He is looking for signs to things that he wants and will still try to say it too. :) He is so funny and he knows it. He was getting Gavin to play a game with him making a noise by plugging their noses and making throat noises. Cracked both of them up! I will have to see if I can get it on camera.

Rhett is now back on the oxygen tanks and is pulling them around. It is so funny that the nurse at the school needs a doctors note that says that the oxygen tanks will still work even though they are laying down. :) He is having trouble sleeping but there is really nothing that I can do about that at the moment. We will be seeing the doctor to follow up with his surgery this next week and I am not looking forward to that. I have to get some appointments set up to see some doctors this summer to check on things but heck proof is needed. Rhett is testing very well at the moment and I just pray that it continues to stay that way.

First day of school

Well Rhett went to school today and we will see how things goes. He is unable to haul around his concentrator because it is so heavy. I informed the teacher that he is going to have to have someone haul it for him and he was like and if he has to go to the bathroom?? Oh please help him have a good half day back from surgery.

Babysitter

So on Saturday I needed a babysitter so I could help my husband put swamp coolers on top of our duplex. Heck trying to get 2 of those on the roof is hard work! Lots of pain. Then we had to cut and bend and try with all of our might to get them to fit. Yes they finally did fit and everything is looking good, all except for hooking it up to the electrical and motor etc... But heck they are standing in the places that they are suppose to be on.

Less is a great friend and I was so very grateful that she was willing and able to watch the kids for about a hour. The kids were great for her and I am so happy that they were good. I did ask Nikole to help with Dylan if he needed help while I was on the roof helping.

Katrina was also such a wonderful help watching the kids for 2 hours so I could help finish putting the swamp coolers up in their spots. As I was there doing that I got some sun on my face and man it is hot and hurts a little. Not too much that is ok not a problem. The kids did have fun playing with their cousins for a few hours. :)

Thank you ladies that means a lot that you were both willing and able to help me by watching the kids so I could help on the roof of the duplex and not having to worry about the kids.

After the bandages

We were able to take off the bandages and this is how he is looking today.


This one is of his right side. I am not sure how well that bruise looks to you but I did take another picture because it looks too dark to me.

This next one is of the left side where they had to revise the entire device.

There is a close up of his right side where they only expanded it.

Here is the picture of the bruise that I think looks better since you can see it better.

Then there is his whole back where you can see both of the incisions. There is where the drain was that they had to drain all the fluid from around the lungs.

Finally Pictures of Easter and Surgery

Here is a few pictures from our Easter party in the hospital. The kids had fun and were able to enjoy each other and candy and toys at the same time. :)

Dylan was the first one who was picking up the eggs and was really excited to start cleaning up the room since there was a whole bunch of eggs everywhere.

Nikole was great to help pick up eggs and enjoyed looking and finding a brush in her basket.

Finding eggs everywhere!

It is a good thing that Rhett had Gavin and Nikole to help find all the eggs that were all over the room. They had a ton of fun but I really wished Rhett would have gotten up and helped.

How excited and fun to see so many eggs and guess what there are candy inside. :)

These next pictures are of his bandages and how he is looking now. We did take the bandages off and the steri strips are still there thank goodness!

This is a huge bruise that he has never had before. The doctor said that it was from stretching and possible bleeding from the VEPTR pushing against the wall of his chest.

So Frustrated a rant

So what should I do when I fell like doctors are going too far?

After this surgery that Rhett had I am very frustrated to see how much pain he is in.
The doctor said that he was very aggressive and it is my son that is suffering.
Don't they understand that I have to see him every day.
I ache each time I see him since I think they went to far, of course I put everything on the line.
He is so bruised and battered.
He had a huge drain and it really hurt and there is still a hole where they took it out.
Yes they did bandage it but it was HUGE!
He has 5 bandages on his back and is not eating very much,
not drinking very much,
not moving very much,
not taking pain meds as much as he should.
I want to cry wondering what I did to my baby!

His shoulders have risen to the point that for me it looks like he doesn't have much of a neck like he used to. It almost looks like he is shrugging a little.
He looks like he is hunched over to me which is very sad for me to see him not stand up straight.

What have I done?
How can I change what I did?
How much more does he have to go through?
Is he mad at me for putting him through this surgery?
Do I really know best?
How can any mother do this to their child?

Can you tell I have a lot on my mind?
What would you have done in my shoes?
I would love some feedback...

I will post pictures tomorrow when I am more awake.

Home again

Rhett is finally home! He is still in quite a bit of pain but there is nothing I can do about that at the moment. Before we left we were able to meet Braydon and his mom. Braydon also has VEPTR's so it was really nice for Rhett to meet him and be able to know that he isn't alone. We found out that Rhett has had fewer surgeries than Braydon but is followed by more doctors. :) He was sure excited to find that out.

Nikole was so excited to see Rhett that she grabbed him and I had to remind her to be gentle. :) Then the whole way home from grandma's and grandpa's she was jumping around because she was so happy to have Rhett home.

Gavin was so happy to have mommy home and so was Dylan. They were throwing themselves all over me and playing with each other over me too. It was great to get so many hugs and kisses. :)

Mr. Mom

Rhett is recovering.
He has been not taking pain medicine when he is in pain.
He waits until it hurts so bad and then plays catch up.
Oh Boy!
He is just trying to suck it up and not worry about it too much.

My little man tells me he cannot feel about half of his abdomen and I am wondering why the heck he is having that problem since he has never had that before. I was told that they might have pinched a nerve and to talk to the surgeon. Can you guess what I am going to be doing tomorrow when the doctors come for a visit?
So now I am very unsure how the heck he is doing. :( Not happy about that.

Miss Nikole had a great day at school and I was able to talk to her while.
She said that when sees Rhett again she is going to give him a big hug. :)
What a sweetie!
She loves her brothers very much!

Gavin was excited to report that he had a great day on Thursday at school!
Super proud of him!!!
He went to a friends house and then they took him to school for me.
Thank you so much Shalane!!!
Hie friends were so excited to see him and play with him before school.
That means he got his 'big reward' of playing four sword with daddy because he was good at school for 4 days in a row!!! YEAH!!!

Dylan is doing great with daddy! So happy that he is a daddy's boy!
Hope that tomorrow is as good as today.

Daddy has been hanging with the 2 youngest boys today.
Nikole yesterday called him Mr. Mom. :) LOL
Well that is what he is at the moment and he said everything is going good.
Now I just pray that I can come home to a pretty clean house.
If that happens he would be Mr. Mom. LOL!

Surgery

Rhett is in surgery right now! He is doing good as far as we know. They brought his hearing aids and oxygen cannula to us just recent and said he is ok. The doctor said it will be around a 3 hour surgery and man sometimes those 3 hours are the longest in my life.

Nikole, Gavin and Dylan all stayed with grandma and grandpa last night. So excited for a sleep over. Nikole went to school with grandma, Gavin went to play with a class mate before school and Dylan is hanging out with grandpa.