Post Surgery...

2 days after returning from Cincinnati, I am finally recovering enough to write an update on Grace!  Our trip to Cincinnati was a whirlwind, and started off pretty stressful with our younger daughter Chloe (22 months) having a double ear infection the day before we left, and the night before the surgery spiking a fever of 103.3!  We thought we were definitely going to spend Wednesday with one daughter in surgery and the other in the ER!  Chloe's antibiotics finally kicked in and the fever was gone by Wednesday morning.
    The surgery was scheduled for 2 1/2 hours, but ended up taking over 4 hours!  One of the main reasons it took so long was just because Grace is so small that they had to bring in a microscope :)  We sat down with the doctor and he was very happy with how the surgery went.  He felt that Grace will end up having a "near normal" voice!  Her swallowing should improve as well...due to her bring so young, the nerve should regenerate faster than it would in an older child.  He has seen it take between 6-9 months in older kids.  Grace was only the 3rd child to receive this surgery in Cincinnati, and by far, the youngest.  When he left us, we started to get up to wait for Grace to wake up, and I finally had my meltdown.  I was so overwhelmed with everything that had happened and the realization that my little girl is having her life changed, I just sat down on the floor and cried. 
    Grace was given alot of anesthesia, morphine and fentanyl and she had a hard time waking up.  She started throwing up from all the medicine, and had me worried for a couple hours!  Then she began demanding crackers, and ate about 20 the first night :)  We could barely hear her talk-a whisper would have been an improvement!  Meanwhile, Chloe was exhausted and going crazy-she was all over Grace's hospital room, and at one point was swinging from the sink.  No, I'm not kidding...then she tried to take apart the pipes under the sink!  In the midst of all this, we got a call from the Ronald McDonald House that there was a room available!  What an answer to prayer!  We were able to cancel the hotel reservation with no fees, and Greg and Chloe stayed that night at the RM House.  I was lucky enough to get to sleep in a "chair-bed" at the hospital :) For those of you who have had the great experience of doing that, you know that a hospital night's sleep is pretty much worse than not sleeping at all!  Add to that severe back pain by the morning, with no coffe upon waking up, and you get a grouchy mama :)
   Grace was sounding better, still very hoarse and raspy, but she was drinking enough that they discharged us!  We couldn't believe we were already leaving!  We got to have a Thanksgiving meal at the Ronald McDonald House, then took the kids to the Cincinnati Zoo....where most of the animals were inside and nobody was even working...it was funny, turns out Thanksgiving is not a good day to go to the zoo :)  We still had fun, and drove home Thanksgiving night.
   Our whole family is catching up on sleep and just resting alot.  Grace is on a bit of restricted activity, oral antibiotics to prevent infection, topical antibiotics on her incision, and a reflux med for a month or so to prevent any acid from damaging the surgical area.  She's doing so well, starting to eat again, and being such a good girl not running or jumping around.  We will go see her regular ENT here in town in about a week so he can check on the incision.  It's a bigger cut than I thought it would be, and I'm really hoping she doesn't have much of a scar.

   Still in disbelief that this has actually happened, and I'm a little lost now on what to do with myself!  Much of my life this year has revolved around research, phone calls, planning, pushing....to get this surgery done.  Now?  I guess I need to do some Christmas shopping and get ready for our trip to California over Christmas!  It's almost like I'm a normal mom again :)
   I can't tell all of you enough how thankful I am for your prayers, for caring about my family, and just for all the support we've received through this journey from both old friends and new ones.  We really did have a great Thanksgiving, getting to not worry about cooking or dishes, but really just being thankful and appreciative of all that we have been given this year.

Black eyes, fevers and surgery!

We leave for Cincinnati tomorrow morning and I'm feeling pretty far from prepared!  We have had a crazy last 24 hours, with Chloe getting croup and a double ear infection-she has had a fever of high 102's since last night.  We are hoping that after 2 doses of antibiotics tonight, the fever will be gone!  Grace managed to give her poor, sick sister a black eye last night as well!  It was an accident, but a frustrating and a new experience I was NOT prepared to handle. 

Grace has told us she is excited to go to the hospital, but we know she has other emotions that she doesn't know how to share with us.  Over the last few days, temper tantrums and disobedience have picked up as her way of expressing herself.  Greg and I attempted to sit down and talk to her tonight about the hospital, but....a rational, logical conversation with a 3 1/2 year is hard to come by :)  Our conversation went something like this:  Me: "Grace, are you scared of going to the hospital?"  Grace: "Yeah".  Me:  "What are you scared of?"  Grace: "Thunder."  Me: "Ok, are you scared of anything at the hospital?"  Grace: "Can we do Halloween again?" 

The brain travel of my child cracks me up :)  Anyways, Grace is always a perfect patient once she is actually at the hospital....we ask for prayers over her little heart and mind to feel safe and protected though.  The surgery will take place at 1:15pm on Wednesday-that's Eastern time.  It's scheduled to take 2 1/2 hours!  The recovery is not very long, surprisingly...she will stay in the hospital overnight 1-3 nights...most likely we will come home on Friday.

This is going to be an exciting Thanksgiving for our family!  3 years ago, Grace came home from the hospital the day before Thanksgiving after the aspiration pneumonia that almost took her life.  So here we are, spending that same date, 3 years later, getting a unique surgery done that will change all of our lives!  God seems to be constantly reminding us how much we have to be thankful for :) 

The surgery will consist of taking a nerve from the neck (so there will be cutting into her neck and a small scar) and placing that nerve into her left vocal cord.  The nerve can take up to 6 months to regenerate, so she will also be receiving an injection into the vocal cord with a collagen-like substance that will create an immediate effect.  The injection will wear off after a few months, right around the time the nerve regenerates.  The cord will never actually function, but it will be a tight muscle instead of floppy as it is now, allowing Grace's voice to be louder and for her swallowing to improve.  There really are no words to describe how excited we are to hear a difference in her voice over the next couple weeks!

I'm feeling pretty emotional about all these changes, and am hoping I don't have a complete crying meltdown at an inappropriate time...like when we're talking to the doctor :)  This still seems completely surreal, and I can't believe we're really leaving tomorrow.  A friend has been reminding me that I told her in January that my "New Year's Resolution" was to get Grace's vocal cord fixed...this might be the first one I've ever actually stuck to!  Apparently, medical miracles are easier to come by than dieting :)  We are so blessed to be in this position, and still stand amazed at the doors God has opened for us this last year.  I will be posting updates as I can...can't wait until Wednesday!

Time for Cincinnati!

It's hard to believe that Grace and I ACTUALLY leave tomorrow for Cincinnati Children's Hospital!  Now that it's here, there a little less excitement, and a little more "holy cow, how do I pack to entertain a 3 year old for almost a week?!" :)  Our stay will be Sunday through Thursday- an extra day was added on for a video swallow study.  On Monday Grace will be undergoing a scope (probably the hardest test for her) to watch her swallowing.  Tuesday is a Hi-Res Chest CT Scan under anesthesia, Wednesday is a Bronchoscopy under anesthesia again, and the Video Swallow Study is Thursday.  Then, theoretically, we drive home.  My biggest hope is that te doctors are convinced she is in immediate need of the reinnervation surgery, and just have us stay longer this week!  There will be some financial and logistical issues if that happens, but it would be so much better than going back in the middle of winter!

Realistically, it's a long shot for the doctors to do the surgery next week, but that's what we're hoping for!  Grace is handling the trip well so far-we've spent a lot of time talking about it, and right now, she's pretty excited about getting to jump on a bed in our hotel :)  She's such a little trooper and an easy patient-her emotions usually are expressed after a hospital visit through potty accidents, temper tantrums, separation anxiety, etc.  So Greg and I are trying to prepare ourselves for however she reacts after this visit.

As of today, I am not feeling very ready for this trip.  I've been battling a cold all week and just cannot get rid of it, I was given a steroid injection in my knee yesterday and am having some side effects from that; all around just not feeling as healthy and strong as I normally do!  I've never left Chloe for this long, and am really trying just not to think about it because it might kill me...Greg will be home with her the whole time, though, so they will have a great Daddy/Coco time :)

We're renting a car and driving to Cincinnati tomorrow afternoon with the largest suitcase on the planet, cans of Pediasure, some snacks, a portable DVD player, movies, stickers, art projects, books, toys, Mickey and Minnie stuffed animals, and a Starbucks app on my phone to ensure that I am NEVER without caffeine :)

I'm specifically asking for prayer that I would be healthy and without physical pain as of tomorrow so that I can take care of Grace 100%.  For us to travel safely (I haven't driven that far by myself since Greg and I moved from L.A. to Sacramento in 2005!), for a complete Presence of Jesus for Grace in every procedure, wisdom for the doctors, and that all odds would be defied by them doing the actual vocal cord surgery while we are there this week!  Thank you for all prayers and support-will probably just be posting updates through Facebook since I might throw my phone against a wall if I try to type a blog while battling spellcheck on my iPhone :)

Cincinnati!!!

After 4 LONG months of insurance red tape, we finally have scheduled the dates for Grace's initial evaluation at Cincinnati Children's Hospital!  Grace and I will be there from October 3-5...still a ways away, but oh well.  She'll be getting some hi-res xrays, a bronchoscopy and probably a dozen other tests during those few days.  The bronchoscopy will be the hardest since she's had two really bad reactions to anesthesia in the last year. 

I've been trying to just take one step at a time in this whole process....but I can't stay at one step for very long!  So of course, as soon as we got the dates, I started thinking "HOW are we going to pay for all this?"  We'll have at least 3 trips to CCH over the next few months, and the cost of travel, hotels and food is going to add up!  We've been talking about doing a fundraiser, or using my parents' non profit organization for donations...but I've still been a bit stressed about how we're getting there!  For those of you who don't know, Greg lost his job back in January, and has been doing some touring jobs with a band, but things are pretty tight for us!  We even sold our second car a few weeks ago, so driving to Ohio to save money is out unless we buy another car in the next month.

Today, I received a phone call from someone at CCH, letting me know that Grace's insurance has travel benefits!  WHAT?!  Apparently, they will pay for a hotel, and reimburse for food and mileage (and sometimes flights if convinced of the necessity).  Could there be better news than this?  I'm still so blown away by all the puzzle pieces coming together in this!  I also found out that the ENT doctor assigned to her case, the one who will be treating and operating on Grace, is the Director of the ENT Dept, Chair on the ENT Board, and the Director of the Aero Digestive Clinic!  He's led the medical field in developing techniques and equipment for children with obstructive airways.  So essentially, we have one of the BEST (literally voted Best in the country for several years) doctors possible treating Grace!

I'm so excited for Grace's future, and the possibility that she will have a louder voice and be able to drink normal liquids again!  I'm definitely nervous about upcoming procedures and surgeries, and we may also have a tonsillectomy in the next few months.  But, as always, she will be covered in prayer and come through better than anyone expected :)

My little girl still amazes me and yes, STILL, bring tears to my eyes on occasion when I sit and watch who she is today.  The child who said 2 words last July?  Now she DOES NOT STOP TALKING.  When I find myself getting annoyed by the incessant, rambling conversation of a 3 year old, I remind myself what I would have given for this just last year!  Grace continues to be the kindest (except for occasionally biting her sister:), most gentle (again, 95%) and sensitive 3 year old.  If I'm in a bad mood, or upset, she is upset and acts out, and is very clingy.  I think that someday her sensitivity will transform into a compassion and deep empathy for others.

Chloe, Grace and I are headed out to California in a couple weeks for some fun times with my family and our friends...I can't wait for everyone to see how much Grace and Chloe have changed since last December!

Bad Day....GOOD News

So, as many of you know, Grace had a brain MRI scheduled for this morning at Vanderbilt.  The MRI is sort of to check on her, but mostly to rule out something called a Chiari Malformation, which can cause swallowing/aspiration issues.  Since her aspiration has increased,, we now know there is something else at least partially responsible for it besides her vocal cord.  Grace's ENT doesn't think she has any kind of a neurological disease, but needed to check to be sure.

Anyways, after getting up before 7:00 (not my style) and treating myself to a ridiculously expensive Starbucks to handle the morning, Grace and I arrived at Vandy at 8:00am.  She was doing great until the IV had to be put in...and she managed to KICK the IV out as soon as it was in :)  So, we started waiting to go back, and then various techs, nurses, doctors started coming by to discuss the fact that Grace has a small staple and coil in her heart from having the PDA ligaiton when she was 8 days old.  Now, I knew about the staple, but I have never heard/been told about a coil.  I'm pretty on top of Grace's medical history, so I was a bit surprised!  I informed a nurse from anesthesiology last week about the staple and she told me it would most likely be fine.  What she DIDN'T do that she was supposed to, was make sure the implant record was in the system, or get it ordered from California.  If those implants are made of metal, the MRI can heat them up in her body, as well as be a magnet to them!  So it's obviously EXTREMELY important that we know what kind of material the implants are made of!  I decided to wait to see if we could get the record quickly from Sutter Memorial in CA, since the IV was already in.  Grace was a little trooper, and we had an awesome nurse (who happened to be a friend of a friend).  Grace kept herself busy by coloring with marker on the hospital sheets and herself...the lesson learned today is that "washable" marker is not nearly as "washable" as they claim :)

By 12:30, we were both done, though. Grace hadn't been able to have anything to eat or drink since last night, and I was starving and exhausted.  We decided to call it quits, in spite of the IV being in and rescheduled for next Wednesday at 10:00.  I cried when Grace cried while the nurse took out the IV, and have felt horrible for subjecting her to that unnecessarily.  So, we have the MRI rescheduled, but we actually don't know if it will really take place until the implant record is received....I can handle alot, but medical incompetency is not one of them! 

In the midst of all this craziness, I received the phone call that we've been waiting on for weeks....Grace has been APPROVED to go to Cincinnati Children's Hospital!!!  There are a couple logistics to get done over the next week, but we should be able to schedule a date in a week or so!  I'm so excited, and thankful for all the prayers that went over that insurance approval!  I can't believe it's really happening and that at somepoint in the next few months, Grace will be able to get the surgery on her vocal cord that will literally change her life.

I know this is long, but I just have to add in, that my husband is so amazing and sarificial.  Today, Greg took care of Chloe while we were gone, brought me Mexical food from my favorite restaurant when I got home, continued taking care of the kids while I rested and took a nap, then let me go to the gym by myself, made dinner, and even vacuumed the house...all while being unbelievably kind and sweet to me.  He is the best partner I could ever ask for!

Ok, so bottom line is: crappy day, but FANTASTIC news!!!

Prayers for Insurance!

Just got the news that our ENT has FINALLY sent his letter of medical necessity to the insurance handling person at Cincinnati Children's Hospital!  It only took him 7 weeks to write it :)  The next step is for the insurance company to review the letters from Grace's ENT and pediatrician and decide if there is enough medical necessity to warrant her leaving the state for treatment.  I'm told this process is 4-5 weeks...please be praying that every person who comes across these letters at the insurance company, every person involved in making this decision, would be moved by Grace's name and conditions, and see the need to approve the treatment at Cincinnati Children's Hospital! 

This is the biggest hurdle of the whole process, so here we go! 

And more good news!

Today I got a phone call from Cincinnati Children's Hospital to discuss the insurance situation for Grace.  I was under the impression that her current insurance (through the state) wouldn't pay for out of state coverage.  Found out today that they often will!  Basically we get one shot at convincing them to pay for her treatment at CCH-we need her pediatrician and her current ENT to write letters to the insurance, advising them that all treatment in Tennessee has been exhausted and she needs further care in Cincinnati.  These letters have to be exactly what the insurance is looking for, or they will deny her coverage.  As it is, the insurance only approves about 50% of the cases submitted!

We had previously been excited about finding some private (albeit very expensive) insurance for Grace through Greg joining the Musician's Union, but we would have had to raise about $10,000 for out of pockets expenses!  Now we don't need to raise money, just prayer!  As everyone knows, that's the easy part for us :)   We are VERY used to raising up prayer for our little girl and seeing statistics overcome!  Numbers like 50% mean nothing to us-ironically, that was the number given to us the night Grace was born, her chance of survival.

I am in disbelief at the way this is coming together so easily and at costs so much less than we had anticipated so far!  We need LOTS of prayer over this insurance!  First, that the doctors would be willing to write the letters.  Especially her current ENT, Dr. Wootten-we haven't discussed this with him yet, an I am a little nervous too since it essentially tells him we don't trust him (which I do as much as I can trust a doctor but he doesn't have an answer), so it's a bit awkward.  Second, that the letters would be written correctly, and third, that all would go smoothly at the insurance company-whoever reads the letters would be moved with compassion for Grace and see the medical necessity for her treatment in Cincinnati.

This process will take 4-5 weeks, so I am going to go ahead and schedule Grace's first visit for about 6 or 7 weeks from now!  In the meantime, my little girl will turn 3 years old next month!