Walker is sick again. About a week ago , his seizures started increasing at night again. Andy and I braced for what might be another crazy leg in our journey.. We have been taking turns staying up/ sleeping with Walker since we got home from the hospital in August. He has been waking more since he was in constant status and it makes it difficult to get sleep.. More difficult for one of us..uh hum.. I mean, I am a lighter sleepier then my counterpart.. Right?
But truly the past year we have not gotten much sleep.. and before that.. we had two children. It’s like reverting to having a baby again up through the night except that the room is on fire and your child is not breathing and there is saliva filling the room..Lol. but really..I have tried everything to make this work..
I recently shared on Facebook that we need help through the night . Walker is on the MCC waiver and we have 100 plus hours a week to use to help care for him .. We are currently using about 20-30 hours a week through Pediatria. The help that we have is from asking our friends if they want to get hired with company and do a shift.. There are not any RN’s available to care for him outside of our realm.. It’s crazy but several other companies don’t have them available either. (what are other moms doing???) We have had two of our favorite PICU nurses, my cousin who is an ICU nurse, a dear friend who is a retired RN , and another RN friend who picks up a shift once a week. THat’s 5 different nurses that help us on a weekly basis .I have sweet friends who aren’t nurses that have come to help us in the past for several hours a night.. That is how we have survived.. Before August, we had one nurse for 8 hours a week. Andy and I have realized that we need more help. It is a difficult thing to swallow that you can not care for your own child. The realities of Walker’s sickness is that we need others to help.
Putting the SOS out there will hopefully yield us a nurse that can pick up one or two nightly shifts a week to help us get some strength to keep going. I was incredibly humbled at the sharing of our SOS and how people are rallying to get us the care that Walker needs. Truth be told, we would be in the hospital again right now if it wasn’t for the help we’ve had. Walker stops breathing, goes extremely tense, moves his arms and head rapidly and chokes on saliva.. He has had these seizures on and off for the past year. But when he catches a cold, which is what has hospitalized us the past three times this year, his brain just can’t handle it. Rescue meds don’t work very well and if we went to the hospital, Walker would be in a coma and most likely not recover.
When we came home in August from our last visit, he was in status and on hospice. He recovered.. and that is our hope now.. That he will recover but we are going to keep him home and search for help. Please pray that this cycle can break. Please pray that we find a good fit for our family as far as night nursing goes. (Do you know how bizarre it to have someone in your home while you sleep?) We need someone who loves him and cares for him in a manner that can only be found in the way Jesus loves us. If you haven’t followed us in the past, please catch up on his story at our caring bridge page.