13 Weeks Are Gone….

I can hardly believe that we have been here for 13 weeks. I was worried about being admitted in the beginning for a couple never imagining what was to lie ahead.

Sorry that it has been so long since I have posted but I have been pretty down lately. A had his botox done on Tuesday March 26th…9 days ago. I have to say that I very disappointed since then. There is absolutely NO change in his saliva production. Well in a good way. He has more. And ever since having the botox he has this nasty cough and a TON of chest congestion. To the point where we have needed to suction him at night so he isn’t satting in the 70s while sleeping. The doctor who did the botox said it could take up to 12days but I can’t imagine that in three days there is going to be a miraculous outcome.

His episodes also started to happen again on Sunday during his nap. Yesterday was an hour long. The doctor was in here the whole time it was going on and I thought that I was going to lose it. I am so emotionally drained. I cried so much yesterday that I still have a headache today. I was so mad and frustrated. I laid him on his bed and just yelled that I can’t do this anymore. The nurse came over and hugged me very tight and told me that it wasn’t my fault. That I was doing what I need to do. And most of all, she told me that yes, it wasn’t fair. She is awesome. I just don’t understand why everything that we do just seems to complicate things. This was not supposed to happen after botox but once again A has other plans. This wasn’t even one of the risks or rare side effects!!!

At the end of his episode yesterday I told the doctor that I wanted to leave. I just want to go home. She told me that we could go by the end of the week because she is going off service so it would work well for her. So after some thinking I have decided that I might just wait to meet this new doctor on Monday. New eyes never hurt. And I figure I have been here so long already, that what the heck will another week hurt?

Then the patient rep that embarrassed me in the team meeting way back had the nerve to come in here yesterday. I was emotional the entire day even talking and he started to get all nice with me. Telling me that he can’t believe we are still here. How he can’t imagine how hard this is on me. Then the wrong line he said….I know how you feel. Really? You have a child that has been in hospital for 13 weeks with no answers? A child that goes blue too many times a day? I don’t think so. Of course I didn’t say this to him, but I did tell him that he didn’t know how it felt. That he goes home at the end of the day and can forget about what goes on here. It felt good.

On an up note, grandma and grandpa S came down on Saturday and stayed until Monday afternoon. J and his dad went to a Leaf game so his mom and I went and saw the show We Will Rock You. We had dinner first and then met up at the Hard Rock afterwards. It was so nice to get out and have fun. Plus I got to sleep in a real bed for three nights in a row at the hotel! Social work got Jeff and I one for the Friday night and then we stayed with his parents the next two nights.

So it looks like we will be home soon. The saddest part of this for me is that we are leaving without any much needed and wanted answers. Unless of course this next doctor is Dr. House?!

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8 responses

  1. Andrea/David

    Dr.House? YEAH!!! I wish he would be real and could help you! I wish you all the best … you always in my thougts!kisses and hugs from Germanya crawling David and his Mommy Andrea

    April 3, 2008 at 11:12 am

  2. The Walsh's

    Shannon, I’m hesitant to even leave a comment, as I have absolutely NO idea what to say. I know that you’ve heard it all…But I am thinking of you, daily, and praying for a miracle. It is amazing what a new Dr. can do. He could shed some light. You just never know. Praying for you, every time I bow my head…

    April 3, 2008 at 1:09 pm

  3. huether family

    Shannon, I’m so sorry that things are not any better, and well are getting worse. You have been so strong for it all and you deserve to have a break down if you need it. The doctor’s need to see you get upset and angry, then they might see how hard this is on you and get you some answers. It’s not good to hold everything inside, or you will make yourself sick. It’s nice to hear that you got some time away and to spend with Jeff. I’m sure it will be nice to get home, but i just hope that you get some help so that you don’t have to do it alone. All in all, you are a very strong person Shannon, we both know that, you have shown more strength in the last 13 weeks that most people would not have in a lifetime. When things look like they are at their worst just remember you can get thru anything, look at what you already have overcome. They say what doesn’t kill you will make you stronger and you prove that each and every day. I’m thinking of you guys always and miss you lotsstay strong and fight for what you believeHugs Mandi

    April 3, 2008 at 2:11 pm

  4. abby

    Shannon,Big hugs from us. I don’t know what else to say. We’ve never been where you are so I cannot imagine what you are going through, but I keep hoping that somehow someone out there has some answers. At least just some puzzle parts to piece together. Ashton is such a strong brave boy and you are such a strong brave mommy but the sheer magnitude and constancy of this all is enough to wear down a rock.We’re thinking of you over here in our corner of cyberspace!

    April 3, 2008 at 5:05 pm

  5. Shannon

    Always is my thoughts. We hope a new dr. can shed some light on things for you.Thinking and praying for you.Shannon and family

    April 3, 2008 at 8:03 pm

  6. The Hull Munchkins

    I can’t imagine how desperate you must feel during Ashton’s episodes while there are no answers why they happen. I’m so sorry.We have wished for a Dr. House many times! It would be nice.Hope you all can go home soon to rest from all the hospital drama. I hope Ashton does better for you at home!-Patty

    April 3, 2008 at 8:31 pm

  7. Nathali

    this must be so frustrating for all of you. We will keep you all in our prayers!!!

    April 4, 2008 at 1:01 am

  8. Justinich Family

    As always we are thinking of you and Ashton, your family and of course the drs.

    April 6, 2008 at 8:08 pm

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