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!

Travelling, Holidays and Upcoming Stuff

Well, we made our first trip back home a couple weeks ago!  It was so great to see everyone, and watch Grace and Chloe with their grandparents and uncle.  We had a few unexpected events, with Chloe getting a fever and ear infection on our first day in CA!  5 days later, Grace started coughing and getting a fever.  Last Friday, I ended up in the ER with Grace having a temp of 104.5 and rapid breathing!  It was pretty scary, and.  I was thankful for a close friend meeting me at the hospital to keep me company.  The doctors thought Grace had pneumonia intially and told me to plan on staying overnight!  I think I had a little bit of PTSD at that point!  Amazingly, Grace did not have pneumonia, and they sent us home with antibiotics and steroids.  Sadly, she was still sicker than she's been since she was in the hospital 2 years ago, and we spent our last days in CA just hanging out at home.  When we got home, Grace was diagnosed (by her own pediatrician) with a cold, an upper respiratory infection AND double ear infections!  Really hoping and praying this isn't how we're spending our winter!

We celebrated Christmas with my family in CA, and we'll be having a nice, quiet day with the girls on Dec. 25th.  We have (probably too many) presents to give, and I can barely wait until next Saturday to watch the girls get their Fisher Price kitchen from Gammie and Papa, and for Grace to open her 32 inch Minnie Mouse!  Chloe, I think, will be most excited about the wrapping paper :)

Since Grace's last bronchoscopy was cancelled due to RSV, it's now rescheduled for January 10th, 2011!  Since then, Grace has become part of Vanderbilt's C.A.D.E.T. clinic.  I have no idea what it stands for, but we met with her ENT dr, a GI dr, a pulmonologist and a swallow specialist about a few weeks ago.  It was a LONG appointment, answering alot of questions about Grace!  The doctors all meet and come up with a plan, and they will all be involved in her next bronchoscopy.  During that, the doctors will basically be testing for any hidden infections in her throat, lungs, GI area, etc.  That process will take about 90 minutes.  There is also some concern regarding Grace's swallowing, so she is having a Video Swallow Study (similar to what she used to have with the g-tube in) this next Wednesday at 12:45pm Central Time.  We would appreciated prayers that they find no evidence of aspiration or any other swallowing issues!

Will post an update on Wednesday!

Change of Plans

Well, we won't be having the bronchoscopy this week after all!  Grace got sick on Sunday, and then she had a red mark on her arm, so I decided to run her into the pediatrician yesterday.  Turns out the red mark was a burn-no idea how she got it!  But she sounded so congested in her chest, the doctor tested Grace for RSV, and she was positive!  Chloe most likely also has it,but only has symptoms of a cold.  RSV is basically a viral infection that can attack the respiratory system.  Grace is actually doing great and already seems to be getting better today, but we are having to reschedule the bronch :(  We're stuck at home for a few days since the girls are contagious...Chloe is very strong and healthy so she seems okay, and Grace is barely coughing at all now.  So we'll wait, and hope and pray we can manage to get to the second bronchoscopy without Grace getting sick again!

Next step

It's been a few weeks (maybe a month?) since Grace's bronchoscopy, and while she got very sick and sounded terrible after the last one, we've seen great results!  Grace is now able to run around like any normal 2 year old without getting tired!  And she can run run run for HOURS without getting tired or even wanting a nap...not exactly the result I wanted :)  So it's been pretty great to see what a big difference removing the cyst has made! 

She's been getting steroids through an inhaler to reduce the inflammation in her vocal cords.  Next will be another bronchoscopy this coming Thursday to understand what is going on with her vocal cords.  Since Grace had a cold last time, the ENT wasn't sure if they were red and swollen due to that, or allergies, or something else.  So we could definitely use prayer for Grace to stay HEALTHY this week!  The ENT will also be checking to make sure the cyst isn't growing back at all. 

Grace had a really hard time coming out of the anesthesia last time, and she was in pain to the point she needed morphine.  I'm glad I know what to expect this time, but am hoping she will not have as hard of a time with it.  Looking forward to getting some answers and a plan for her vocal cords-she's such a smart, fun, creative little girl, and I just really want for Grace to be able to express herself vocally more than she can.

The Results

Grace did really well with the bronchoscopy...except for the waking up and trying to rip her IV out ;)  The procedure took a bit longer than expected because Dr. Wootten found a cyst that he didn't expect.  The cyst was on Grace's trachea, and most likely cause by the ventilator tubes from when she was a baby, and has been growing since.  He was able to remove the cyst today and feels that we are going to see a big difference in her breathing!  Her vocal cords were very red and inflamed, but that could be due to her having a cold right now.  He prescribed a steroid that should reduce the swelling.  He thinks that we may even hear a difference in her voice now!  Dr. Wootten feels that he still doesn't have a definitive reason for her vocal cords not opening all the way, and wants to see Grace back in the OR in 3 weeks :(  He needs to make sure the cyst doesn't grow back, and to be able to look at her cords without her being sick.  He did say that her left vocal cord isn't moving as much as it should, but it's not enough for surgery at this point.  So-we're VERY happy that a major cause of the restricted airway appears ot have just been a cyst!  Once again, a doctor was surprised by what he found in Grace :)  We're not done yet, but I think we're definitely on a good track.  Next will be to get another bronchoscopy in 3 weeks, then possibly allergy testing to see if that's causing the inflammation also, and Grace may end up getting seen by a whole team of doctors that specialize in airway issues.

Grace did great, and drove a little car around the hospital before going back with the nurse...she was so fascinated by the stethoscope, she didn't even look back at us!  She's pretty dopey still, but happily watching Curious George now.  Thank you for all prayers and support this morning...will now need prayers that the cyst doesn't grow back, and that Grace IS NOT sick for the next bronchoscopy!