Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

This Post Brought to You By Chocolate and Red Wine

on November 21, 2013

So, this week has been a very busy week. We have made some major decisions regarding Agnes. I have had a major turn of heart.

On Sunday I wrote and I was at the bottom of my reserve. Hope seemed so pointless and the prospect of continued medical care for Agnes seemed overwhelming and also pointless.

On Monday a new intensive care doctor came on rotation at the PICU, and we had a long chat with him about Agnes history and possible long-term courses of action. He was very thorough and quite lucid in his summary of what’s going on with Agnes. I was convinced by his assessment, and I appreciated that he outlined all the possible routes we could pursue at this time.

One route that Jeremy and I could choose is the Medical Intervention Path. This course of action would see Agnes on a ventilator full time, at home, and receiving therapies and treatments to maximize her potential and prolong her life. With this route, we would continue to opt for diagnostic testing in the hopes of uncovering information about her condition, and come to a fuller understanding of what treatments would benefit. If Agnes becomes ill, we would choose any available treatment to help her be well. She may continue to be in and out of the hospital. We would continue along this route until we reach a point where it seems like we are doing things to Agnes that provide little benefit, cause pain for little reward, or otherwise seem to be “unnecessary” prolonging of her life.

The other route Jeremy and I could choose at this time is the Quality of Life Path. This course of action would see Agnes weaned off the ventilator, if possible. If that is not possible, that would be The End for her and we would make sure she is comfortable and happy. We would not opt for continued diagnostic testing, unless the tests are relatively painless and quick. Agnes would receive therapies and treatments to maximize her comfort and enjoyment of her environment, but not necessarily prolong her life, nor maximize her potential. If she hates something, we would not continue doing it, if discontinuing the activity is an option. If Agnes becomes ill, we would evaluate whether treatments would “unnecessarily” prolong her life, or if it is a minor illness she could make it through with relatively little discomfort.

On Monday, Jeremy and I opted for the Medical Intervention Path. Agnes clearly benefits from being on the ventilator. She has very little reserve to fight illness: if she gets what would be a minor illness for us, it could kill her. Really. The ventilator will hopefully give her a backup so that if she gets a cold or something, she can cope and maybe not die. Or maybe not wind up in the PICU. The hope is that Agnes will only need the ventilator for short term, through the winter “respiratory season,” as they say in the hospital. In the spring, she may be able to wean off the ventilator. So Jeremy and I will give it a whirl. We hear stories all the time of special needs kids who were previously ventilator-dependent suddenly being able to wean off the vent. It could happen that way for Agnes, too. But if we don’t try it, she is guaranteed to become gravely ill and possibly die.

So, as you can imagine, this was an enormous decision to make. But you know what? I feel good about it. On Monday when we were talking with the doctor, I felt clear-minded, and the course of action we should take was obvious to me. Of course Jeremy and I are nervous about bringing Agnes home on a ventilator, but we both know it is the right thing to do. I know my turn of heart was because of all the prayers you all sent up for me and my family. I can’t thank you enough.

That is not to say that now we all feel just relieved and thrilled and light-hearted, of course not. It is still a daily struggle to cope with stress and the overwhelming burden of caring for a gravely ill child. Hence the wine and chocolate I am currently enjoying. I do feel relieved that the decision is made, but coming to terms with the reality of it will take time. We have only just begun our caregiver training for the ventilator that Agnes will use at home. There is a lot to know. And Agnes is still more or less recovering from the surgical procedures she had earlier in the week, so we haven’t really seen how she is awake and alert while on the ventilator. What if she hates it? She has had a few episodes over the past couple days where she has become extremely agitated and upset, and morphine was the only thing that finally calmed her. We think it is because she is still in pain and ouchy from her surgeries, but what if it is because she hates the ventilator?

Even though the ventilator is meant to give her time and to support her breathing, it is not a guarantee of health. She may still end up back in the hospital, gravely ill. Or she may still have a pulmonary hypertensive episode that is so bad it leads to cardiac arrest. That is a possibility for her in her condition. There is too much going on with her for there to be any clear answers. I think I would be devastated if–in the end, for all the trouble we are going through with the ventilator–it doesn’t actually make a difference.

But, we’ll see. Agnes could be coming home during the first week of December if she tolerates the ventilator, and we get home care nurses organized, and we complete our training, and we make the necessary electrical modifications in our home. There is a lot to do to get ready for bringing home a kid on life support machines.

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One response to “This Post Brought to You By Chocolate and Red Wine

  1. JeneaSwainston says:

    Wow! You have a busy time ahead of you! Loads of prayers continue for your peace of mind with this decision and for Agnes to tolerate the needed treatments. Love you all, Aunt Jenea

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