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Sunday, January 16, 2011

You better fasten your seatbelts its going to be a bumpy night.......

So I apologize profusely for not writing and updating as much as I used to. The longer this whole thing drags on the less I want to write about it. I feel so repetitive and things change so quickly that if I update one day, the next is usually 180 degrees different.

Anyway, I have also been having some huge issues with the hospital, I wont go into detail at all but that has unbelievably compounded our stress levels to the point where I almost think that I am more stressed out in the last month and a half than in the previous 8 months due to the fact that I have had to deal with a lot of other issues besides just dealing with going back and forth to the hospital and being with my son. Enough said.

I have been extremely adamant about the training of the trach as I do not want Chad and my training to uphold Thurs tons release(they wont release him until we are signed off on all training) so yesterday was the first time that I was able to change Thurs tons trach. When he is at home we will only have to do it once a week, and of course during emergency situations(lets hope those are few and far between.....the trach can get occluded or clogged as it is very very tiny and he could suffocate very quickly unless you change it out pronto...happy happy joy joy) So Chad and I have to change it at the hospital 3 times each and you cant change it but every 3 days so you don't irritate his poor little windpipe, so you do the math, that is at the very least 18 days. Anyway, he is no where near ready to go home or stable enough but just want to make sure we get all of that in. It went very smoothly and quite frankly it is actually very easy. It does take time to set everything up and it will most of the time take two people because Thurston has no neck and he wiggles alot, but the actual trach change really takes about 1 second. So that is going smoothly so far and I hope we can get all of this out of the way quickly.

As far as Thurs tons stability, he finally is OK, as a matter of fact, the doctor told us that he had an overload of patients and Thurston was the healthiest so he would be the one to move back to the Intermediate care never thought I would ever hear those two words together ever, Thurston and healthiest one. Don't worry, I am not disillusioned by my sons illness. He is still a very sick little man. I am now very aware that he could still possibly die from this illness.......its something that just comes along with a kid in his shoes, who has been in the hospital this long and who is still on an unbelievable amount of cocktails and oxygen and support. Once he no longer needs oxygen and he gets the trach out will be the day when I can finally feel that he has somewhat joined the rest of the preemie world and be may be only more suceptible to illness than other kids etc. I kind of doubt he will ever join the real real real world. I fear that too much has happened to him and that unfortunately alot of this will haunt him for the rest of his life, but I hope we can get to a point where life will be comfortable and enjoyable for him. He has been puffing out quite a bit lately, retaining a lot of fluid, alot more than even right after the surgery, I might be able to post a picture later but my poor boy looks like the stay puff marshmallow. They are now tweaking a lot of things this week in hopes of transferring him from the hospital vent to the home vent and then we will be trained on all of that. Then they have to keep him on the home vent for a while to tweak that and see where he lands. In the mean time Chad and I will be training away, trying to get it all in so he can finally come home. Could be another month, no one knows it all depends on Thurston.

Yesterday was pretty exciting. Right after we did the trach change we were on our way home where Viola was being watched by our wonderful friends Janet and Jim who came out for a second time to help us again...they are just pure and utter angels!!!!!! So we get a call telling us Viola had vomited all over the place and she had a slight fever. So far we were not too worried until we got a second call telling us her fever had risen to 105.6. We were driving in the rain, through heavy traffic, and no where near home. I did not even hesitate, call 911. She had also complained of a headache and I was terrified as to what that might mean. So I called 911 and they came to the house and we were able to get there before they took her to the hospital. They asked us where we wanted to go and said pretty much anywhere we went most likely they would send us too Dell. You know what Universe. When I told you that I really really really wanted my whole family under one roof for once, that is not exactly what I meant. Anyway, the weird thing was when we got there I thought I had recognized the EMT people....lo and behold they were the same ones that transported Thurston on Thanksgiving day. One of those top 10 lists of how you know you have a very very very sick start to know the entire medical personnel throughout Austin Texas. Anyway, when we got there there was no way I could go see Thurston because of Violas illness and vomit all over me. Ain't no way I was going to expose him to all of that, that's the last thing that poor kiddo needs. So even at the hospital we were still separated. UGH. I did manage to get a pumping in and give him a nice dose of antibodies hopefully that protected him.
Anyway, after all the tests etc it was decided that she just had a virus and they sent us home. Its funny Chad and I were talking about had this happened to Viola pre-Thurston we would have thought it was the end of the world. We would have thought that was the worst thing that could have ever happened to us or our family hahahahahahahahhaaaaaaaaa. I wish. Throw any flu our way, I dare you. Give us a broken leg or arm, I laugh in your face hahahahaha. What we thought was so horrible at one point, now just seems like a mere drop in the bucket. My son has a horrible life threatening illness, and yes there are some things that definitely could be worse I know, but now spending 5 hours in the hospital emergency room was like a spa treatment in the grand scheme of what we have been through. You never know how good you have it etc. al.

Anyway, sorry for the long delay and because my husband is in charge of the camera and loading of videos, I cannot post any stay puff pictures but hopefully I can as soon as that is all done. Thank you again for all of your continued support and prayers. I hope all of you are doing well and healthy safe and warm. I knew this beautiful older lady that I served in my restaurant in my waitress days who always used to tell me the one simplicity of life.....Everything is always alright as long as you have your health.......she was 100 percent dead on right. Cant wait for that to be true for my son. It seems that its just taking too long poor little guy.


  1. We are all praying for the day my dear daughter. Love you all.

  2. Wow sis...always makes me teary eyed and laughter filled perusing your writinginginging...stay puff!!! I think that's a stick to me name ;)
    love you guys very much always enjoy reading these, sorrow needs laughter sweetie... through all this there are smiles,..makes everything worthwhile:)))
    LU>>> DDLL

  3. thinking about twinny and your family!!!! xoxox -Irene