We are well overdue for an update on Ava Grace's port wine stain (PWS) and today seems like the perfect day to update since she had her second treatment yesterday!
(Toy bag waiting for Ava Grace when we arrived in Cincinnati)
We have really been round and round with the insurance company in the months between her last treatment and today. Although they do not require pre-approval, they denied to pay for Ava Grace's first surgery. Actually, they paid everyone except for our plastic surgeon. We appealed and they continued to deny. Basically their policy states that until she is having painful symptoms and negative side effects from her PWS, surgery is considered cosmetic. So, until she is suffering from painful nodules, bleeding spots, and impaired vision (among other painful and life changing symptoms), Cigna won't help her. There are many problems with this - the big one being that by the time a PWS patient has reached that point, laser removal is no longer nearly as effective!
(Pre-op appointment...
blood pressure - check
heart rate - check
gold fish - double check!)
After the disturbing news and ensuing back and forth with Cigna, we were very discouraged and looking at having to save, beg, borrow, and fund raise to pay for her remaining treatments out of pocket. That was until, a friend of ours approached Chris at work and suggested he contact the Shriner's hospital in Cincinnati.
(View of downtown Cincinnati from our hotel room)
I didn't know anything about the Shriners or what they do, but I placed that call. I still am in awe of the conversation that followed. It was a 3 minute phone call. The gentleman on the other end of the line introduced himself. He asked for Ava Grace's name and birthday and for my name and Chris' names and our birth dates. He asked me to share with him why I was calling. I stated that Ava Grace had a PWS and that insurance was not going to cover her treatment. He then said that they have doctors that would love to help us and cover all of her treatment for free. That was it. No qualifications. No forms or applications. Just this: You have a child with medical needs and we have a doctor that can help. done.
(leaving for surgery: 6:00 AM)
The Shriners have 22 hospitals across the country, specializing in different things. We had to go to Cincinnati to their hospital there. They are a burn center, but they also treat kids with PWS, cleft lip and palate, and other reconstructive/plastic surgery type needs. We went in January for our pre-op assessment and to meet our surgeon and schedule our first treatment with them. We were told at that time that they will take care of all of Ava Grace's needs related to her PWS for free. They will track her development and any follow-up treatment will be taken care of by them until she reaches age 21. We were, again, in awe. To add to the incredible services the Shriners are providing, we were told that accommodations are also taken care of and if we need transpiration, they will drive us there as well.
(Morning of surgery - outside of our hospital room)
That brings us to this past weekend. Chris stayed back to take care of Lily and Ava Grace, my dad, and I headed to Cincinnati on Sunday. We went for a pre-op evaluation and they showed us around! That place is nothing short of magical, with playrooms and libraries and family areas. Each child gets a VERY large room for them and their family. They had toys waiting for her to play with and keep. It was great! They checked her out and prepared us for how the next morning would go and gave us instructions for getting her ready in the morning.
I think the hardest part, by far, was not eating! She couldn't have anything after midnight - and this girl really enjoys breakfast! They had a room reserved for us at the Radison overlooking the river. We tried to get a good night's rest and then headed back to the hospital bright and early Monday morning for surgery.
We had to be there at 6:30, but surgery wasn't until 8:30, so it was quite a task keeping her distracted from her hunger. They had her little hospital gown and toys ready for her when we arrived. She spent a lot of time playing and visiting with the nurses and her Papaw. Every nurse on the floor spent time in our room or hanging around our door - Ava Grace was a HUGE hit and they all just went on and on about how cute she was and how they couldn't believe she was walking so well and so verbal at such a young age! You know this Mama was proud!
She finally got too hungry to care about toys and exploring, so the nurses took her for a walk and passed her around the nursing station and as one of them was holding her, she fell asleep! It was great! The doctor came to get us and she was already taking a nap, so we walked with her to the operating room doors, kissed her on her sweet sleeping face, and walked away. (That's the hard part!)
Thankfully, the procedure doesn't take long and they only put her under with a mask for a short a time as possible. Less than 20 minutes later we were being paged. The recovery nurse called to tell us that she woke up immediately and was straight up mad and she needed her mama! We met her back in our room and gave her some juice and yogurt!
(playing before surgery)
(after surgery, eating yogurt)
We hung around for a little bit to make sure she was fully alert and was walking and jabbering normally. She seemed back to herself and checked out great, so we were allowed to leave around 10:30.
Our nurses were wonderful! Actually everyone there was wonderful - it was such a positive experience. Ava Grace did so great! Dr. Kitzmiller felt like he got good results and no over-lasering, so no blisters!
Everyone always asks if it hurts. It doesn't hurt during the procedure because she is asleep and she gets a mega-dose of tylenol before to help with pain after. For 24 hours, the lasered area feels like a mild sunburn. After that, no pain at all!
Here she is this morning! Her usual happy self, rip-roaring and ready to go!
We will return to Cincinnati in June for her third treatment. I am already looking forward to another great experience. My new charity of choice - the Shriners and the incredible work they do to provide for the needs of children!
