In the moment of panic brought on by a drowning child we have been unable to stop the drowning for two weeks, we were prepared to admit him to the hospital. The doctor assured us there was almost nothing more he could add in the hospital and if it is still our desire to keep M home, the he can and will do everything at home that he would do at the hospital.
As II spoke to the doctor, M exprssed his desires in a way he has never been able to do in the past. He begged me no more hospitals. Please don't make him go to the hospital. He doesn't want to go to the hospital. For II and I, this is as far as we can go.
We have begun aggressive comfort measures for our son. We cannot and will not permit him to drown to death unless we have tried every possible avenue to stop it. Even if that means we stop supporting the liver so that we can make choices that are extremely harmful to the liver, it is acceptable when those same measures can and will stop the drowning.
Last night, we changed course. We set aside standing our ground, as M's primary CF doctor for so many years has taught us. We gave ground to this disease, and have choosen to sit and comfort our son. After watching him have no cognition of his bowels anymore, we are moving him to diapers with chucks underneath to keep the messes contained. We are borrowing button-up shirts from brothers so clothing changes are easy for him to tolerate. We picked up supplies late last night.
We have begun an aggressive course of steriods to allow M to breath comfortably. We will continue the IV antibiotics, again because it helps him breath. We retired his pnuematic vest, set down the treatments that are done to clear the gunk out of his lungs and will continue only with those that allow his lungs to function, as painlessly as possible. We have converted the corner of the living room to M's area. Never again will he go to his bedroom. I will not sleep at night wondering if he will be awake in the morning or not.
Most of last night, I laid down next to M on his beanbag chair. I held his hands, I stroked his head, I comforted him, I reminded him I was here. He slept holding onto me. At 5am, II, who slept on the couch, traded places to help my hurting body stretch and to take his turn to hold and comfort M. Two children refused to leave M through the night, so they camped out with us.
This morning, I have begun to teach the vision of end stage Hospice to my children. After years of pushing M to do for himself, we do FOR him now. We don't let go of him. We don't assume he can do anything. We comfort him. We hold him. We support him when he wants to walk. He is awake and he is playing the iPad this morning. He needs help. If there is a wrong button to press, he WILL press it and will shut down every game he attempts to do for himself. Thus, siblings will take turns simply helping him now. No one person can carry this burden alone. We must all support M and eaach other.
I have a call into Hospice. Their grief counselor is coming sometime today to work with his siblings. Several know and realize this is the beginning of the end, and they are weepy. Their hearts are breaking, understandably. They need to process. I have also begun to explain that they MUST take care of themselves as well. Death will not come when we dictate it should or must. It will come when it is time. So long as M is holding on, and is comfortable, we MUST continue to care for our own needs, individually and as a family. We cannot start a death watch that isn't time yet. We don't get to choose this. Death will choose it's own time to take M.
What is certain is that we are at the beginning of the end. When the last moments come, we cannot say for certain. It will be soon. It will be far too soon. It just isn't this very moment that I write. I don't know how much longer M has. His body is ravaged. His liver is nearly gone. His lungs cannot continue this fight.