Coming Home Soon?

After set up for the sleep study…

I love how curious he is now!

Cuddles with Vickie…

February 24th…

February 25th with NPT tube…

Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.

So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.

Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.

Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.

There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.

Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.

Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.


7 responses

  1. huether family

    OMG SHANNON, I don’t even know wht to say, no one know’s what you are gong thru or thinking, but you have to be strong and spend the awesome time with Ashton, and live each day to it’s fullest. You know that Ashton is happy and always smiling because of you. You gave that little boy the best life he could have, so no matter how long or short it is, Ashton was happy and loved and that’s all that matters. Ashton has proven doctor’s wrong before, if he’s as strong as you are he will live for years, he will be there to smile at his mommmy and daddy on the second most important day of their lives, he will be there to show you more love than you thought was possible. So i hope that you have the greatest time of your life with him, and know that you did everything you could. You are a very special person to me Shannon, and i wish i could take away your pain. I’m here for you always, I can’t wait to see more pictures of you two in all the things your going to do when he comes strong and keep smilinglove ya lots HugsMandi

    February 29, 2008 at 9:57 pm

  2. Lisa

    Shannon,I am lost for words. It is hard for me to believe that a little boy that has defied SO many odds cannot perservere through this.I look at his smiling face and think that they all must be wrong and that he will show them.They have been wrong on so many occasions…Please stay strong for him and know that you have done so much to help him.He is such an amazing guy that I refuse to believe that there isn’t more in store for him.

    March 1, 2008 at 2:39 am

  3. baby james

    Shannon, I am sorry you do not have the answers you were hoping for. I was shocked to read your thoughts, I feel the same way as the other people wrote. You are and have been such a wonderful advocate through all I wish there was something I could do for you. Please live each day to thefullest. I don’t know what else to say, I will hope for nothing but the best for you, Ashton and all. Tracy

    March 1, 2008 at 6:36 am

  4. Nathali

    Hang in there Shannon!!! We’ll be praying for you all!!!!

    March 1, 2008 at 2:27 pm

  5. Angela

    Shannon, you and Ashton have been in my thoughts constantly. I wish there was an easy answer for Ashton and you could get some certainty as far as the course of treatment.Please, keep sharing what you can and know we are here to listen and of course keep Ashton in our thoughts.Love to you guys…Angela

    March 1, 2008 at 6:03 pm

  6. Justinich Family

    Shannon, I think you are doing a great job for Ashton and like the others said he has defied the odds so many times and he is strong little guy. All those with special needs kids know that the risks are higher in so many ways for our kids. That makes each day with them even more special. Enjoy each day with Ashton, and from one scrapbooker to another takes lots of pics and scrap everything. I just love looking at my scrapbooks of my boys and reliving those moments. I hope you guys get to go home soon. Stacy from CP moms

    March 2, 2008 at 4:53 pm

  7. Sis Sarah

    ((BIG HUGS))I hope the botox helps and there willing to do the CT SCAN, while they do the botox. Sarah

    March 2, 2008 at 5:21 pm

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