Saturday, February 8, 2014

Home Again, Home Again, Jiggity Jig

This is what the button looks
like from a side view before
it is inserted.
Yup, you read that correctly, we are home!  What a wonderful word that is!  We are home after a very eventful 8 days in Texas.  This might sound a bit crazy but coming home was bitter sweet.  You see, the doctors and nurses in Texas have been so integral to Gracies care.  While we have been seeing them for four years we haven't really gotten to know them or spent any great amount of time with them until this past fall.  Unfortunately they were always our second opinion.  So we would be in their office every 6 months and a few times here and there when stuff would get crazy and I needed the voice of wisdom.  But since September we have been there every single month sometimes multiple times a month.  Not only have they become like a family away from home, but they have gone above and beyond each and every time to show Gracie how much they love her and how awesome she is!  They have held my hand and helped me in the new stages of Gracies condition and they have helped me to remember that I am Gracie's best expert.  That I am fully capable of taking care of her and that I am doing what is best for her and our family by simply praying for God's peace and following that peace.  When I am in Ft. Worth I am surrounded by people who know the complexities and anomalies in Gracies conditions whatever they may be exactly.  I am surrounded by people who want to help her and do what is best for her and that will spend all day calling several different offices just to get the right things at the right times!


A Childrens Hospital
TOTALLY dedicated
to making kids smile!
But in leaving I am leaving the doctors and nurses that have helped me to get use to the new equipment and pieces of my daughters body that were not there before the surgery.  She now has a G-tube and although she has had one before it is not the same type of G-Tube.  Instead of the Mic-Key button she has the MicroVasive PEG button this go round
.

Loop Recorder and the Process 
She also has a Loop recorder above her heart that comes with two hand held devices that help to download or lock info in with a time stamp.  This will allow us to monitor her heart and watch for any abnormalities that are not consistent with seizure activity or her brain slowing down.  This is the best way to eliminate any possibilities of heart defects/malfunctions that could be secondary from her neurological issues and therefore we can help her heart.  If her heart is fine and it is stopping and going to fast and too slow and not remaining steady, then we will know that it is happening because of her irregular brain activity.  I have left my bubble of security.  Both from the hospital and the support that comes from being in the Ronald McDonald House surrounded by parents who are going through their first hospital stay with a specialist or things that are harder and far more long-term (in the hospital) than I am.  It is this mash up insta-family-ish-community that rejoices when someone gets to go home and celebrates the small miles stones like being able to sit up to the major issues like one of our friends sons was intubated for 29 or so days and then despite having the possibility of being put on ECMO he was able to go through with extubation!!  And that was miraculous!  These mama's and daddy's that were away from their babies for a nap or a meal or a shower while their children were in very serious-very long-term stays at the Ft. Worth RMDH all loved on Gracie, encouraged her, played with her, listened to her, and prayed over her when she was struggling.  We were so grateful to be in such a calm and loving community of people who get it in their own way.

But coming home, well that is home!  It is where my sweet family is.  That sweet family that God has so graciously given me even though I feel so unworthy to be the mom of FIVE kids!!  Let alone a military wife with my current revolutionary sentiments.  It was so adorable to surprise my kids and to be embraced by each at the same time, to have one melt down into a puddle of tears just because they missed me so much!  To hear them talk about how much they missed the little things that I do for them each day.  It made me feel like I was the best mom in the world and I am so grateful for the reminder that I am valuable to them!!

On my drive home I drove past a beautiful cemetery that is where my sweet niece-by-choice was buried just a few weeks ago.  In her very short time on this earth I learned more about love, life, and death than I have ever learned in my 31 years.  It made me realize some of the things that I want to do if I do have to face this challenge with Avagrace.  It also made me realize how lucky I am to have such wonderful best friends and how lucky I was to be able to be there with them during such a private intimate time!  But most importantly it made me realize how close heaven really is and that I have babies in heaven of my own playing with Sweet Gabriella, Princess Ellie-Kate who will forever teach me the meaning of communication and the power of overcoming all obstacles to command center stage and have her crowed turned to putty in her hands (I would let her pull every hair out of my head just to hear her giggle and then hug me before doing it again), Corbin on of the happiest babies I have ever had the pleasure of snuggling and although I only got to hold him once it will be a moment etched in my mind forever, Roland the very first sweet baby funeral I ever attended to my life long friend and big sister for a few years who said this very wise word the day of the funeral "everybody always wants their baby to stay a baby forever, well now I will have my baby forever in heaven!"  {Amen, what is heaven if not with babies!!}, and then there is India this beautiful young lady who was so beautiful that I must say it twice, she was so bright, artistic, and the jewel of her mother's eye and although I never got to meet her, I followed her life very closely on Facebook(stalker..what?).  Her mom is such a positive person and a great encouragement and I have loved to watch the way that she and her girl loved each other so deeply.  And really there are so many more kiddos that this blog could be a roll call.  And that is because I have chosen to love and open up my world to the special needs community and to be involved whenever I can to help and love on others.  Why you ask?  Well for two reasons.  First, I am selfish.  I love it and if I am able to bring someone something to brighten their day then I am on fire!  I often wish that I could win the lottery (that I don't play) for my family of course but for many many many others!  The second reason is because I want to honor My Savior who has loved me, protected me, and given far more to me than I would ever deserve.  But even though I know the facts about the Bible and I believe in the truths…I never really grasped those truths until I was able to be there for Gabriella's birth and then passing.  To hold her and kiss her sweet face.  To love on her and her parents and her brothers and then her sister at the funeral.  This is when I saw how beautiful and peaceful such a horribly sad thing can be.  Nobody wants to say goodbye to a loved one, and absolutely no person in our culture would want to see a child suffer or die.  Yet through being present during Gabriella's short life, I learned more about life than I have ever learned before.  I have learned to rekindle my hope (which use to be a word that I have a love/hate relationship with, I can't tell you how many times I have argued with my Father in Heaven over "what in the world is the point of Hope!")  Well I will say this.  To me, HOPE is not about Hopes within this life, it is that we DO HAVE HOPE because WE DO HAVE HEAVEN and we do get to go and be with HIM there!  And that is why my Hope is in the Lord!  And to think that I did not know that, I mean REALLY KNOW THAT until I met Gabriella!  

Coming home and knowing that I have so many loved ones here in Oklahoma made me feel so connected to this state and to the quick trip to Texas that it has made me question the trip to Colorado in many new ways.  The challenges of finding new doctors that like/love/care enough to treat your child like an individual and not a chart or a paycheck is harder than you think.  This doesn't mean I am backing out…I am just sharing my heart right now and how I hope so deeply that Oklahoma and the FEDS legalize this for the entire country!  If any president could do it, IT WOULD SURELY BE HE.

But, if we do have to go back to Texas again soon, at least we know we will meet some new friends like the ones that we have met this time!  Thank you for loving my daughter!  You gave her such cheer and aided in her healing so much!








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.

www.facebook.com/avacake  Thank you all!






Wednesday, February 5, 2014

Another Installment of "I Was Going to Share This, BUT…"

So tonight I finally have internet.  Man, I hope I didn't just jinx it ;-)  I was going to finish the blog about what the heck we have been doing all this week and why a "quick trip" never is a "quick trip" aka why "outpatient" is NEVER "outpatient."  BUT, I have something way more important to share.

Over the course of this week I have experienced the first time to watch your child be intubated while not under anesthesia for surgery.  And do I think it is scarier than watching their heart stop in front of you?  I continue to believe that it is all relative.  Both are pretty damn scary!  But, something that I watched and reveled in is this week is the power that we have as parents to teach and develop our children without even trying to.  I know that as little ones our children are always watching and listening to us, but for some reason I was never smacked in the face with a moment of distinct mimicry with my older kids as I was with my toddlers.

This week there was a commercial that was funny because it had a pun in it.  I love puns.  They are so punny.  ;-)  It was obviously not something that Avagrace would understand.  But still the second or third time the commercial came on TV she cracked up as if on cue.  One time she laughed and I didn't and she looked at me confused and said "why didn't you laugh." Is it not funny anymore.  I told her that I just wasn't paying attention.  But how important this moment was.

Our girl learns and succeeds and overcomes and adapts because she enjoys following in the footsteps of the persons that are so important to her.  She has always been one to watch and learn.  She has always wanted to be able to do what she sees others doing even if she does it differently.  Her skills in adaptation are absolutely why she is so amazing at being able to move forward when her precious body is fighting her progress.  And MOST importantly, we as parents and role models and support systems should watch how we look at things, what we laugh at, how we talk when things are not going our way, how we handle stress disappointment, sadness, but also joy and excitement.

Many of you are probably thinking duh!  But it never really stops does it?  I am always looking to my elders for encouragement and examples.  I have long been praying for a Titus 2 to come in to my life.  I have even gotten to the point of praying over it and reaching out to specific people.  But God's timing is always perfect and having this reminder, that I am shaping the lives of my children.  Wether they are chronologically and developmentally the same age or not.  Wether they are young or grown.  You are always going to seek human relationships and good company.

As a parent, I pray that I will always be that good company for my children and that the things that I dislike so much about myself, I pray that God can help me to overcome those pits so that my children will not fall into those pits as well!