Thursday, February 6, 2014

The Best Laid Plans, Often Go Awry!

When planning our current trip to Avagraces' Specialist for these procedures, many people were involved to try to make this the safest, most efficient plan to do what was needed with the least amount of hospital time as possible.  Cold and Flu season is a big deal for anyone, but for a child with major medical conditions it is a nightmare.  For Gracie, anytime she has a germ of any kind (UTI, Sinus infection, to an infected wound) she seizes more and struggles to maintain simple functions.  So doing surgery during the most virus-infected season is always risky.  But it had to happen and it had to happen when it did.
Nurse Amy!

The first person that was on the front lines of scheduling, battling insurance red tape, coordinating three separate procedure rooms and surgery teams, and making sure all of the doctors from both states are on the same page is our nurse in Neurology, Amy.  Amy is our Neurologists nurse and she is a true gem and I am so thankful for her.  Along with Amy, our pediatricians referral specialist Penny worked long hours to get tricare and medicaid to do what they needed to do.  I am SO grateful for these ladies.  From there I was in touch with another gem in the cardiologists office who not only helped me ahead of time but also got me through the eight hours that Avagrace was intubated and under the general anesthesia for the duration of her three procedures.  She literally sat with me during the heart monitor surgery and walked me through all that I needed to do with the loop recorder and with her care afterwards.

Coming into this we didn't know if we would get to all three procedures.  We knew that we would prioritize them from most important to least important but we all were confident in her ability to make it through.  After all, her more major surgery in November (the VNS removal) went better than anticipated, was done in half the anticipated time and did not require nearly as much pain meds or ICU time as we had thought that it would.  So this time, with the three procedures being typical outpatient surgeries we knew that there is not such thing as outpatient with her, but we didn't think we would stay for more than a night after surgery and we all really wanted to make it through all three procedures because this is the safest and best option for Avacake.

So, we got through all three procedures!  We had the 3T MRI, the G-button insertion, and the insertion of the loop recorder.

Unfortunately this was a lot harder on Gracie than we thought that it would be, but we are all still so grateful that so many people worked extra hard to get it all done in one long day so that she can heal and get back into therapy; instead of being operated on multiple times thus extending healing with regression, with healing, and more regression, and so on.

So, how did surgery go?  I am so glad that you asked!    It surprisingly went a little longer than anticipated which usually never happens, and while she at first came off of the vent very well and was in recovery for about an hour before her stats started to drop and the seizures started to pick up, she had a major reaction to coming off of the anesthesia and just seized like crazy and thus needed to be intubated again.  This was a first for me to witness except during surgery when all goes so smoothly.  IT WAS TERRIFYING…  Fortunately she didn't have to be on the vent very long but it was really hard to see her struggling to breathe, struggling with pain, and struggling to handle the surgery on her tummy.  Nobody really knows why this was so hard on her.  Especially when she has been so tough and other surgeries were harder than this one and yet so well.  It could have been the fact that we did three separate procedures keeping her under general anesthesia the entire time, but it could be that she has been struggling more as of late.  It could also be that her body enjoyed the help in breathing and so she was quick to be what the docs call "vent dependent."
"Dress Up" is GREAT PT/OT

After surgery and after we got her stable in breathing we had major problems with pain.  In the past she has only struggled with pain for the first day or two.  However, ever time she got to the end of the pain meds she would start to stiffen up and breathe very shallowly hence causing hyper ventilating which is one of her seizure triggers.  So her seizures were way above baseline and were very difficult because they started with low O2.  So, we had to slowly ween her off of the pain meds and get her into PT immediately.  This way she could practice moving her stomach muscles in a calm purposeful way, instead of allowing her to be stiff and rigid and scared of breathing deeply or moving her abdomen.  This was very hard at first but it quickly became a lot of fun as our girl is very competitive and wanted to meet all her goals and get her rewards!  She did amazing and although it took longer than we expected, and I miss my husband, my kids, my bed, my home etc etc etc….but this is not about me.  This is about my beautiful daughter who has proven time and time again that she is a fighter, and my hero.  She shows me everyday what it means to grab this life and make it your own!

She has recently fallen in love with photography.  She has a kodak kids digital camera and took pictures of everything and every where.  It was so precious.  She was a cheerful addition to the Ronald McDonald house, which is where we stayed several days of our stay because it was safer their than in the hospital that was especially full of kids with viruses and germs as this is definitely sick season.  So tonight on our final night int he RMDH there was a precious cheer squad that came to make dinner for the whole house.  We had some of the most delicious lasagna and Gracie got to meet a cheerleader whom also has seizures.  She has a mild form of epilepsy and mainly has seizures at night.  But she impressed Gracie so much and she was so happy to have a squad full of hugs from girls who had a heart to serve.  Lastly, before we went to bed tonight she made sure to say goodbye to every one of her "friends" that she met in the house this time, wether they talked for a moment or every day.

The two highlights from this trip for Gracie have been that she got to see the dogs that she loves that come to the RMDH for pet therapy (the handler of the Dachshund Abby remembered us from our November Surgery stay).  She loves them so much!  And, she got to take pictures of so many things that she loves.  It was so cute and so great to see her loving this new hobby!
 I wil try to share more pics on her Facebook page!  And perhaps we will do a blog with the pictures that she took, and get her perspective on what she has been through.  Thank you all!

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