Monday, September 21, 2009

The Long Version

Last I wrote we were feeling pretty confident that Lillian would get decannulated by November. Well, I haven't written here, just because I've been trying to digest. We went back down to the pulmonary team last Monday. At that time, they determined that it was unlikely we would get everything done that needed to be in order to decannulate. PTL I had my friend with me to distract me on the drive home, but when I did get home and alone the news settled in. I really struggled on Monday and Tuesday, but come Wednesday, I thought I had a grip on it- until- during her feeding she started to cough....which led to the inevitable vomit fest. Each time I bumped the trach trying to get her shirt off, it just made her puke even more. I totally lost it. So, Wednesday afternoon, I sobbed into a towel while our wonderful DT listened and comforted.
During the session we chatted and I guess I just needed to get that out, as she worked with Lillian, the phone rang....it was the sleep disorder center...they had a cancellation for Friday and could get Lillian in. There was lots going on this weekend, including me being the guest speaker at a Women's retreat. Needless to say, God worked it all out. (as usual) She had her sleep study, which we don't know the results of yet, BUT, they were able to cap her for the second half of it. I think that alone is positive feedback!! YAY! We should hear something by Wednesday. She has also tolerated the cap here at home for 25 minutes and I only took it off because they only want us to do it for short periods of time at first. I realize, that decannulation still may not happen in our time, but at least things are headed in the right direction, seemingly.

7 comments:

  1. I was wondering where you were, I should have known, at least you ended on a positive note,Miss Lillian will remain on our special intentions list at church for as long as needed. I always have you both in my prayers, Hang in there my friend. You are incredible. Yes! you are( probably shaking your head no) Hugs!

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  2. While I must acknowledge the disappointment of no decan, I really want to say a big WOOP WOOP for the capping!! HOORAY, that is no small feat!!

    Sending hugs and prayers as always.

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  3. God is good....
    and He gifted us as we sat together. What an amazing afternoon we had!!!

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  4. The Russians say, "tishe edesh, dalshe budesh," the quieter (more slowly) you guy, the farther you get. I know it would be wonderful to have the decannulation complete right now, but there may be reasons long-term to wait. My son decannuilated himself overnight at the hospital waiting for surgery. Because the stoma closed and he kept breathing, the doc decided to let nature take its course. It's course was five spells of complete apnea requiring CPR and two cardiac arrests that accompanied the apnea. It is quite worrisome when you know that your CPR skills are the only thing between life and death for your child -- and you simply cannot trust the child to a babysitter. (I would take him in to the classroom with me when I would lecture to my university students -- and sometimes I had to stop class for CPR. It made quite an impression on my students, one of whom became a social worker as a result.) Anyway, I know it is tough to wait, but I do believe that tishe edesh, dalshe budesh. God be with you!

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  5. oh i feel for you i was tearing up reading your post. Your so amazing i hope your having a puke free day today. Your in my thoughts.

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  6. I'm sorry! God's timing is always best.....but it sure can be hard on us Mommas and our kiddos! Hang in there! HUGS!!!

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  7. Thinking of you, and hoping by now the fog is lifting. It will happen. And I predict she will be a COMPLETE jabberbox, just like her older sisters! ;)

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