Thank you for your prayers and much needed advice. Your emails really do help. I am writing in part to clarify our needs.
We’ve been asked what is happening with the night time nursing help. Hank’s insurance is expected to continue nursing care until May 16th when we will have used up the 60 visits that is provided in a contract year. We are going to request an “extension†from the insurance but we are having difficulty getting the case supervisor or medical director’s name and number. We really wanted to make our case to them for 2 reasons: the case manager assigned to Caden was unable to approve the extension and because the approval has to go through one or both of the people mentioned above. I pray that we are able to get the information soon, we are able to communicate effectively and compassionately, and that the powers that be are open minded. An extension is some temporary help until we have a more permanent solution like the Medicaid Waiver.
The Waiver has been a confusing, frustrating process shrouded in secrecy. The Waiver is best described as an extension to regular Medicaid that provides services like in home nursing care which are not covered by the standard Medicaid insurance. Much time has been spent trying to figure out who to talk to and what steps need to be completed to get a Waiver. Getting the Medicaid Waiver for Caden will be a very subjective process since he doesn’t fit into the 3 main categories for immediate nursing care (mental retardation, on a ventilator, spinal/brain injuries). He does partially qualify for the Dept. Disabilities and Special Needs (DDSN) until age three. The category Caden was placed is “at risk/high risk,†thus the subjective area. We finally got to speak to a human being in Columbia about the Waiver and it looks like there are 96 people on the “critical†list waiting for a slot to open up. People are moved off the list when someone no longer needs the Waiver thus freeing up the funds for someone else to receive care. The estimate is a 6 month wait if Caden is accepted.
As ironic as it may be, our biggest problem right now is finding the nurses not the funds since Hank’s insurance has not yet run out! I have called all the nursing agencies I could find and ALL have a LPN shortage. Our primary nurse is leaving the agency this week and so far we only have 1 nurse and 1 night a week covered (including the week Hank travels!). This leaves Hank and I to try and split the nights. Then Hank has to go to work in the morning as I am getting with Riley and Caden. The only way we can figure is for Hank to go to bed right after dinner while I stay up with Caden so that he can get 6 hours of sleep and I can get him up and go to bed. I’m not looking forward to this schedule because Riley and I will see very little of Hank. We are already exhausted even with 8 hours of sleep at night. The stress really drains us! I can’t imagine how it will be with less sleep. Due to the shortage of LPNs the nursing agency we use has not been able to find us anyone to orient to Caden’s case in the past month. They ran an ad in this weekend’s paper that we are praying will bring in nurses. I have spent hours calling nursing agencies and talking with different people at MUSC to get the word out that we are in need of a nurse. My next try is going to be the nursing schools and to continue to give out our name and number to nurses we meet. If you know any LPN (or RN willing to take LPN pay) that wants some extra hours please give them our phone number or email us with their contact information. We so appreciate it!
Thanks for your time in reading this long message! May God bless you.
Sherry