Home After 88 Days!

Well our journey at the hospital has ended. We brought A home yesterday after 88 long days. I can hardly believe it. I told the docs on Thursday that I wanted to take him home and that I had enough. I just couldn’t do it anymore. Every time I tried to talk to someone I would cry. It didn’t even matter if it was about him.

He had a pretty big episode Saturday around 4pm and then again yesterday afternoon around 1pm. However I knew staying isn’t going to help and I need to try it here at home. If he needs to go back I will know. I have to say too that the discharge papers have many things in there that are not correct and things that I didn’t even know yet. Interesting. Lucky I didn’t have to sign it because there is no way that I would have.

Anyways, long story short we are home with no answers. Home hopefully for a while. A was very happy to be home last night and ended up falling asleep in his chair around 6pm. When he woke up at 7:30pm he had a pretty long episode that was pretty scary to me. I am sure hoping this isn’t going to continue. We had our nurse last night so I was able to get a good sleep.

Thanks everyone for all your thoughts throughout this ordeal. It means a lot to know so many people care.

Easter bunny…

In the car for the first time in a while on our day pass…
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Hanging out with grandma…

My awesome family!

One of his core nurses Sarah…

Sleeping in his chair…

His favorite nurse Jordana…we will really miss her!

Loving kisses from grandma…


Another favorite nurse Jen…

Excited to be home!

Sleeping in his chair last night…

14 responses

  1. The Hull Munchkins

    “Sigh” So glad to see you are home. You all need some rest from hospital stress. I’m so sorry he is still having episodes and no one knows why after 88 days! unbelievable.I hope you can enjoy quiet family time and Ashton can grow and thrive.-Patty

    April 7, 2008 at 6:02 pm

  2. Nathali

    Wow!! What a crazy experience (again!!) for all of you. Hope Ashton will do great at home. I am sure you will continue to try and find out what is going on with him, but for now, just take it easy for a few days and enjoy every minute with your two wonderful men!!

    April 7, 2008 at 7:40 pm

  3. Sarah Furlough

    So glad to see that he is home, but I am sorry that you still have no answers! I will keep you all in my prayers!

    April 7, 2008 at 8:04 pm

  4. Jennifer

    I’m glad you are home – I remember how disconnected I felt toward reality bouncing between hospital/home for many weeks and how I would go to Target to buy new clothes because I wasn’t home enough to do laundry – its not ‘real’ and it sucks.I’m sorry to hear you still don’t have answers – I think of you guys often and have been praying for the best for all of you.Were they doing a genetics work up? I was just talking to a mom in one of my Long QT groups and she ran across a boy with a rare form of mito that had quite a few of the problems Ashton has been facing. I’ll see if I can get some more answers from her and perhaps get you an email address for his mom. I’ll keep you posted.

    April 7, 2008 at 8:16 pm

  5. huether family

    awesome pictures, glad to see you home and Ashton’s big smile like usualhugsMandi

    April 7, 2008 at 9:45 pm

  6. Billie

    Love the pictures! He is such a doll, as always.I am glad to hear that you are home, but sooo bummed out that you weren’t able to get more answers.You are always in my thoughts,Billie

    April 8, 2008 at 3:04 am

  7. Vickie

    Welcome home Ashton, looking forward to seeing more of those smiles!

    April 8, 2008 at 12:37 pm

  8. Vickie

    Welcome home Ashton, looking forward to seeing more of those smiles!

    April 8, 2008 at 12:38 pm

  9. baby james

    Welcome home. I am so glad to hear that you are home. I could not imagine 88 days in the hospital and the thought that they can not diagnose and treat his episodes is just depressing. I wish you all well and think of you often. Tracy

    April 8, 2008 at 2:59 pm

  10. Shannon

    So glad that you are finally home. I hope that you are able to take a few breaths and remember how enjoy your family at home. I’m disappointed for you that you had to go home without answers though. I can’t imagine the frustration you have felt in the last 88 days. I do love seeing the pictures of happy Ashton at home! You guys are always in my thoughts.

    April 8, 2008 at 8:49 pm

  11. Lisa

    Welcome Home Ashton!!It is frustrating that after all of that time in the hospital – no one knows what is wrong.I guess at this point all you can do is enjoy his amazing smile and all of the adorable things he does.Thinking of you!

    April 8, 2008 at 8:52 pm

  12. ladydianne

    Hi Shannon and AshtonDi found a cow that does a flip for mom at loonie lizard today.How did it go at the dentist today?di and I are doing art after physio.we are going to make a beach theme picture using stickers.I’m happy that you are home.I hope to see you sooner than later!loveSean

    April 9, 2008 at 5:49 pm

  13. Emily

    Glad to hear you guys are finally home!

    April 10, 2008 at 3:29 am

  14. BusyLizzyMom

    Welcome home. It was such a long time for you guys and no real answers. When Ashton is up to going out we will have to meet with Melissa and Nathan. Elizabeth has a thing for blue eyed boys.

    April 12, 2008 at 1:48 am

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