I finally have some good news. It has been a crazy time getting to this point though. We were scheduled for a second opinion with a Dr. here in Ft. Worth on June 8th that happened to share an office with the surgeon who did Lucy’s first surgery. The office called me the day before to discuss insurance. Since Lucy had been there before they had her info in the system and could see that she had qualified for medicaid when we went to the hospital for the CT scan back in March. Apparently, Medicaid has different companies you can be signed up under and we were signed up under the worst one. On top of denying part of the CT scan, I’ve been told most doctors don’t accept Amerigroup anymore. So the office called me to inform me that they don’t accept Amerigroup…no big deal we will pay you cash. We are used to this as we have never had insurance and pay all of our medical bills up front. The office calls back an hour later to inform me that they got a call from corporate and they legally can not even see Lucy in their office or take our money because she is on Amerigroup. I burst into tears on the phone with this poor lady saying “You can’t take my money? My daughter needs to see this doctor!” She was as shocked as I was.
After getting through the grief that Lucy may not be able to see the best doctor for her because we were on government “aid” and trying to figure out if I should take the month needed to switch to a plan they do accept taking the risk that some other doctor we need to see might not accept this new plan, I decided to start the process to cancel the coverage. My grief passed and moved to anger at the ridiculousness of the situation and that people must go through this every day. People who don’t have the money to pay out of pocket or the knowledge to know they can do it a different way, suffer the consequences of not being allowed to weigh all the options and choose the right path for themselves or their child. I figure God has a reason He allowed this to happen. Perhaps personal experience in the “system” will help me to defend my small government ideals.
So, in the meantime, I scheduled an appointment with Dr. B in Dallas at the International Craniofacial Institute. Since we were canceling the Medicaid coverage we were able to be self-pay patients. We are blessed that for the time being we will be allowed to be “self-pay”. In the near future this may not be a legal option for anyone once this newly passed healthcare debacle is implemented.
On to the good news. Our appointment was last Wednesday. We met with the Dr. and informed him of all the details. He promptly said, he doesn’t agree with removing the jaw or doing the rib bone graft. He said this will not fix the problem and cause more problems. The real issue is the fibroses tissue. To deal with this Lucy needs to undergo extensive physical therapy. If she had the rib graft it is very likely that it will fibrosis right away and have the same issue. He said her joint is functional and has a good percentage of motion. We need to increase this percentage. Dr. Barcelo recommends for her age, since she would not be able to cooperate in extensive, painful physical therapy, to put her to sleep and inject a steroid to help break up the fibrosis and then manually stretch open her jaw while she is under. This will be a day procedure and she will go home with pain medication. The next step will be to under go physical therapy and use an OraStretch Press several times a day.
They will reevaluate her after 2-3 months of therapy to see if she may need to be put to sleep again for more manual stretching. Then we will wait until she is 5 or 6 and see if that side of her jaw is growing. If not, at that point she will need to have surgery to perform distraction osteogenesis (breaking the bone and separating with pins to encourage it to grow back together lengthening it).
She may need more orthodontics or surgery when she goes through a major growth spurt near the teen years as well. I am very hopeful that she may need nothing more that this first procedure. We have been very diligent in supporting her body with many natural supplements, specifically many that help to balance the bones, ligaments and muscles. She is a champ at taking anything asked of her. She calls one of the supplements we give her the “disgusting acidophilus” except she actually says “acilofilis”. Since she can’t swallow a pill we have to put several things in applesauce or yogurt. Regardless of the yuckiness of it she takes it without fussing!
Needless to say all of this was very relieving to hear. I’m not positive this is the route we will take. We need to pray about it and discern if we need to get another opinion before we make a final decision. In hindsight, I can see how the road blocks we encountered (MRI scheduling mix up that we ended up canceling, not being able to get into the Dr. in Ft. Worth, etc) were all part of God’s plan to lead us to this Dr., especially the MRI. That would have been a completely unnecessary risk for us to take, putting her to sleep for several hours just to take pictures, whereas this procedure to start the process of fixing the problem will probably be much less time under and we will be working towards an end.
Thanks again for all of your prayers and support. I hope that you will continue to pray for Lucy, us and all of the people involved in her care. I will update as soon as I have some more specifics on what we will do next.
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