Where do I begin. I have been Tommy's sole caregiver since he was born. The only time I have left him is if he has been hospitalized and even then it was for the shortest time I could manage. My only "vacation" from him has been my monthly grocery shopping trip to Walmart when my husband keeps him in the van (and me with a walkie talkie just in case). I've been trying to get respite f~o~r~e~v~e~r! I am told again and again that a respite worker can watch him but for liability reasons, they can't feed him, give him medicine or suction his trach. I can work around the feeding schedule, but to not be able to suction his trach could potentially kill him. The trach is his only airway.
I've contacted the Governor office, I've contacted Medicaid, I've made quite a bit of noise on Tommy's behalf. How can I be a good mom/nurse/caregiver on little to no sleep? I finally convinced my Early Interventionist to apply for the Medicaid Waiver program. If we could get to the top of the list, it would qualify us for skilled nursing in the home and I can use my time to clean house, teach the boys, or just rest. Right now none of those are an option. As a matter of fact, it's 1 o'clock in the morning and I am still awake trying to get laundry done, and if I'm lucky, I can sneak in a shower! It's going on a week and I am killing plants when I walk past, but I have nobody to watch Tommy. As a matter of fact, I'm watching him now, on the video monitor. We put a camera in his room. At any time, he could start having an asthma attack and I have to be there to clear his airway. I will have to shower with the door open and be quick about it...if I get to it.
So that is the background. Two months ago, we finally got our EI to file for the Medicaid Waiver list. We were placed at number 920. Then the case manager for the nursing agency met Tommy, called up our EI and here it is, two weeks later and I got a letter in the mail today that we have been reclassified as a critical case. Tommy got bumped straight to the top of the list and is now sitting at number 2. We're going to get full time nurses and respite now. What a huge relief! Now to nail down qualified nurses, but that is going to have to be dealt with another day. For now, I am going to revel in my victory!