Last night, he was cognitively impaired. It was clear his liver was struggling and not winning the battle. He has a lung infection. The antibiotics are not breaking it up faster than his liver is quitting this time. He was worse last night than when he was admitted to the PICU in January. What he needed was to be kept on oxygen through the night and monitored carefully. However, after the week we have had, every adult in the house is covered in battle wounds and every child in the house is leary to even go near him. No one had the strength nor fortitute to battle him again even if it meant last night would be his last. We put him to bed, which is what he wanted all along so he settled and stopped raging and slept.
For the third time this year, I put my son to bed without knowing if he would still be here in the morning and then pretended to sleep while I waited for morning. Not melatonin was enough to trick my body into real sleep this time. II and I actually discussed what to do if he got up for the am IVs and found M either comatose or dead.
Morning came and he was slightly better, not a lot, but increments. He got his IVs and his morning feeding and then we put him back to bed. Since he didn't wake back up himself, we let him sleep until time for noon interventions. We knew if the new level of antibiotic was working, then we would start to see some positive changes. Conversely, if this level is still not sufficient, then we are running out of time before his liver bites the dust entirely if we cannot get the lung infection under control.
When he got up, he ran. Okay, he was trying to steal water to induce vomiting so we quickly had to redirect him to the Gatorade reward system whereby non-cooperating with treatments or inducing vomitting will result in losing Gatorade priviledges. It worked. He stepped away without drinking the water, and more importantly without puking all over the living room. We got his oral medications into him with sips of Gatorade as rewards. We had to reaccess his port and bribed with a small volume of Gatorade. II was able to reaccess solo, far better than the five people it took a mere two days ago. He is currently protesting his breathing treatments. However, with the glass of Gatorade sitting where he can see it, he is doing better. We've just offered M-crack once he starts the treatments.
This is the best I have seen him in this entire lung exacerbation. It may not last, but this is the first time we've been able to extract cooperating based solely his rewards in two weeks. It means, at least for the moment, we get a reprieve from his march into insanity that dying has created in this poor child.
I just don't know how to not throw my hands up and quit now. Conversely, I am only partially at peace at giving up on my 10 year old son. I am fully aware that fighting this is merely prolonging the inevitable. We cannot save M. We cannot stop his journey to leave this earth. Even as we have fought to convince him to work with us and to provide positive reinforcements, I look up and discover his hand down his throat to the wrist yet again. Even if we survive this crisis, within two more weeks, we will be in yet another crisis. If this were his liver leading the way, it would be such a simple answer for me. When it is his lungs that simply crash the liver, I cannot bring myself to sit by and let this child drown to death. II has begun to feel that the compassionate thing is to simply stop fighting him and allow him to go down into that dark night. I promised this child he would NOT die a death by drowning. I fell it is my maternal edict to fight the drowning at all costs.
I promised M over four years ago that I would do everything in my power to force death to come by a great sleep. I would not stand by and allow him to drown to death. That death is horrific, and I believe the raging that has escalated this week is directly in relation to the distress the slow drowning has created in M. Evenso, how many more times can I do this? How long must we stand between this child and the drowning Cystic Fibrosis fights to claim in his lungs, praying that his liver will go first and simply grant him the peaceful sleep that is the LAST dignity this child deserves to have in this world? I fear my resolve to survive this, to fight for his sleep instead of this monostrous drowning gets harder every day that passes. Today, we appear to have finally turned a corner. Yet, it will come again and again until there is no fight left in any of us and death will come, whether we are ready and whether we hvae the opportunity to choose it or not.