Ups and Downs

Annie is 2 1/2 weeks post-op and has been doing remarkably well this past week.  She surprised us by no longer needing her prescription pain meds after about 2 weeks post-op!  We have learned that recovery from this spinal fusion has been SO much easier than her kneecap removal surgery recovery earlier this year!  We are so grateful that Annie isn't requiring any braces and isn't in a position where she'll develop more pressure sores like she did with her kneecap removal recovery.  We are still getting used to moving her without her back curling up--she stays stiff and rigid like a board now with those rods in her back.  But generally, I'd say Annie is almost back to her usual self since surgery.

However, this kid just can't catch a break.  Although her surgical recovery is going very well, about a week ago Annie developed an upper respiratory tract infection that is continuing to linger.  Last Sunday she began vomiting, so we naturally suspected a UTI--the most common reason she vomits.  We had her checked out the next day but everything came back negative.

With all the congestion and phlegm in Annie's throat, we now believe she was vomiting because she was gagging and choking on so much congestion that she couldn't clear on her own.  We are back to keeping Annie's suction machine by her constantly and that has helped with the vomiting.  She is often unable to have a productive cough on her own, so when she does start to cough, we run to help her out with the suction machine. 

Annie's seizure activity has also increased the last few days.  She is no longer on the valium for muscle spasms in her back, so we expected a slight increase in seizures as we stopped the valium.  The type of seizures she's been having lately are her giggling seizures, where she'll just giggle and giggle for no reason.  They are bittersweet--it's so fun to watch her smile and hear her adorable laugh, but we know that it's only a seizure causing it.  This morning one of her giggling seizures turned into a grand mal seizure, so that wasn't fun at all, but it stopped pretty quickly on it's own without the use of rescue meds.

To say we are exhausted would be an understatement.  Annie slept pretty well when she was on heavy pain meds and we would typically only be up with her once or twice in the night to give more meds and change her position.  However, since she's been sick over the last week, she seems to cough all night, and continues to require suctioning regularly throughout the night.  By about 4:00am most mornings Justin decides to just stay up with her and sit with her in her room.  A couple nights the congestion has been so bad that we've had to get Annie up in her chair just so she can breathe better.  That has seemed to help her, and she's enjoyed watching TV in those early morning hours, but it has left us feeling beat! 

Overall, we are thrilled with the results of Annie's surgery and how quickly she is recovering from such a major surgery with such extreme blood loss.  We feel so blessed that the surgery ended up happening at a time when other obligations were at a minimum and we have this Christmas break to try to rest at home and take things easy.  Heavenly Father is definitely guiding our family and sending so many blessings.  We have so much to be thankful for!

We continue to be amazed by the outpouring of love we have received!  Several people continue to ask about Annie on a regular basis which means a lot to us. Several teachers at Annie's school have brought us home-cooked meals as well as gift cards for take-out meals!  People from our church have also helped to bring in meals and watch Molly and Lexie for us.  Even a friend in Texas wanted to bring us a meal, but is obviously too far away, so she sent us a restaurant gift card!  We are so touched by all the kindness we have received.  We have such generous and thoughtful friends who are truly helping to lighten our load!  It's so helpful to not have to worry about meals when we are so exhausted!  Thank you to everyone who is helping us and has continued to keep Annie in your prayers!  We are so thankful for all of you!