I am back from my trip to the Secret City. I spent a couple of nights in Oak Ridge, TN. This is the location where the root of the nuke was assembled for the beginning of the end to WWII. I could tell you what I was doing there, but I would have to kill you.
The real story is here in SC. Caden is still doing great. Sherry weathered the last two nights without any assistance from a nurse. Tuesday night was a little harder than we expected it was going to be. She found that the early morning shift that I normally take is not always a cake walk. Caden often starts stirring between 4AM and 6AM with multiple messy diapers. And believe me when I tell you that this little boy does not like a dirty diaper. I forecast potty training to be completed in less than fifteen minutes when he gets old enough to undress himself.
Anyway, back to the story. Caden is also cutting teeth which means his secretions are increased. This requires more frequent suctioning. That keeps us active throughout the night making sure he does not get gagged on his secretions. Tuesday night was so hard on Sherry that I called a sitter to come over Wednesday night after Riley went to bed. We have used this sitter for a couple years and she is great. Unfortunately she went off to college last fall and we only get to use her during college breaks. She came over a few weeks ago and met Caden. Sherry showed her how to suction Caden and she was comfortable with watching him. She came over last night to give Sherry a chance to sleep a few hours. The really cool thing is that there is a program that will help pay her. It is a respite program through Easter Seals. Sherry got a little sleep and we did not have to foot the whole bill for Caden’s care.
On the nursing front we officially have only one more nursing visit that my insurance will fund. The insurance through my employer allows for up to 60 visits per contract year when home nursing care is necessary and approved. There is still an LPN shortage. That is why it has taken us five months to use 60 visits. For example we only have a nurse scheduled for one night out of the next ten days. I spoke to the agency today that has supplied 90% of Caden’s nursing coverage in the past five months. They have recently run ads in the paper for LPNs and have got no response.
The Medicaid Waiver application process is still ongoing. Caden was denied by one agency, but the case was referred to another that can override the denial. The bottom line is this. If you have a child that requires nursing care they had better fall into one of the following categories or you will have one heck of a fight on your hands trying to get approved. The child has to (1) be on a ventilator, (2) be mentally retarded or have something related to mental retardation, OR (3) have a spinal or head injury. That is it. If you have a child requiring nursing coverage under the Medicaid system that does not fall into one of those areas, then you are almost out of luck. I did say almost. There is some degree of subjectivity in the process somewhere, but getting your application in front of the people who have the authority to review the case is ashell game. We find now that we are ending back up talking to people that we talked to months ago when we were getting misled by Caden’s first Early Interventionist. This is a VERY frustrating process. I try to shield Sherry from the logistics of dealing with all of the Medicaid and insurance red tape. I ask her to focus on making it through a day with these boys in the best way she knows how.
I know this was a lot of information, but I have not previously shared all of the dirty details on this Medicaid process or the Easter Seals funding. There are people who find their way to this web site by chance. Some are searhing for answers to their own battles with find care for their loved ones. I track postings and comments on other children’s pages who have been diagnosed with DiGeorge. I sometimes share a link back to Caden’s Page on other sites. Some people find this site by searching for things on Google like Caden, LPN shortage, DiGeorge, infant heart surgery, or even God. Anyway, now you know more on the story of our Medicaid struggles and hopefully our lessons can help others understand if they are searching of answers on how it works.