When I got home from work last night Mike handed me a letter from the insurance company. I just sighed and looked at the envelope with disgust. Once I opened it and read it in detail I realized they were now denying Jude's hospice care. At first I was a little upset and then I realized this is probably a lifetime cap that Jude has hit. The average adult spends 6 months on hospice when the average pedi spends anywhere from 6 months to 3 years on hospice. So I put a call into the insurance company and reached a woman who was very kind. I could tell she hated to explain that we had indeed met Jude's cap. As I took my nightly walk I began to think of all the people both elderly and young that face terminal illnesses. The people that don't have a medicaid backup and I began to think about how stressful it must be for their families. I thought back to when Jude didn't have MDCP and how our family struggled just to make it. Tragic situations can financially ruin families and that's just a horrible fact. So although I fight tooth and nail to maintain Jude's nursing I am grateful for the medically dependent children's program in Texas today.
I haven't slept well the last few nights and I am extremely emotional today. Partly from the lack of sleep and the other part knowing it's been one year today since we brought Jude home on hospice. I looked back at my blog posts from this prior week in February and on the 4th this stood out to me. "The ICU doctor also sat down with Mike and myself and talked to us about intubation. She pointed out that Jude could be intubated to where he gets over his illness and is his smiley self again, but he may not. She said there is no judgement at the ICU and that sometimes we have to look at the facts. That sometimes dedication and love means realizing that we don't want our children living the rest of their lives in hospitals. The rest of their lives on medications, struggling, and in pain. She said the older children like Jude tend to start getting more hospital stays and they become longer with each visit. I listened to her with a heavy heart and I knew she was being as kind and as honest as possible. I knew that even if Jude gets better this time...........he has a long road ahead and that road always has the same ultimate ending. So my job is to hold his hand and walk that road with him as long as I have the honor to do so."
I remember how kind the ICU doctor was and how you could tell her words were as honest and forthcoming as they could be. I appreciate how sweet and honest she was. Then I looked back to the blog I wrote when we brought Jude home and I recalled every raw feeling I had that day. http://www.cjengo.blogspot.com/2015/02/only-love-judehardest-blog-i-have-ever.html
The last year has not been easy but it's been one full of smiles from Jude. We have been blessed with our time with him and he is such a little fighter. Mike and I have struggled with our own depression, stress, and not so great coping skills. We are thankful for Jude's nurses that take great care of him and have became extended members of our family. We aren't sure what the future holds but we are here holding Jude's hand the entire way.