(This post is late - the counseling was two weeks ago, but I want to include it here for those who may follow on this path - then I'll update on what's happened since then)
Our appointment with Dr. Cutler on Oct 2nd was our final outpatient visit before the scheduled transplant admission on Oct 11. Since Pat, our transplant nurse-coordinator, had gone over much of the logistics before we met with him, he focused on the consents and medical details. In doing so, he walked us through the consent form paragraph by paragraph, underlining or marking things as we went.
Bottom line: it's SCARY. He had previously discussed some of the risks, such as hepatic occlusive disease, with us. And of course infectious risk seems obvious. I understood before this (thanks to some other moms' blogs and photos) that Ryan would lose serious weight, and I've been trying to get him to beef up a bit so that he has more fat to fuel him and his body won't digest his muscle when he can't eat.
The standard plan is for TWO central lines (IVs placed into the large veins through the chest wall) so that they can not only give him IV fluids, blood products and medications, but also nutrition. That TPN (total parenteral nutrition - giving all the necessary nutrition by vein) is standard drove home to me that they expect all patients to be unable to eat for a significant period of time.
I think the subject that gave Ryan the most pause after he realized what was being asked was the one regarding his acceptance or refusal of life support measures. The doctor asked whether he wanted breathing tubes, etc. Ryan's initial reaction was that he'd rather not have them. The doctor replied that of course no one wants them and these aren't used unless necessary. Ryan repeated that he'd rather not have them. I unstantly recognized that we were talking life support.
I spoke up and said that my feelings were that in my opinion it boiled down to whether we were prolonging living with a reasonable chance of recovery or prolonging dying. And that in a 23 year old, I would expect a "full court press" unless it was apparent that there was little hope of him recovering. At that point Ryan realized what was being asked and agreed that he would authorize whatever the doctors deemed necessary. Ryan has not signed a living will or assigned a health care proxy (one from NY wouldn't be valid in MA anyway). Dr. Cutler said that in MA the person to make those decisions was first: the spouse, second: the children, and third: the parents.
Ryan signed the consents.
The ride home was somber. The reality of what lies ahead and been driven home - of necessity, since patients need to have their doctors speak frankly with them.
The weather was gray, and so was our mood.
Until this point, we had been sailing forward toward this future, happy to have survived to this point. Once again: what choice do we have? Going boldly where we never wanted to go. Facing possibilities of many life-threatening complications, plus almost certainly thyroid failure and cataracts, all with the necessary confidence that the medical professionals with God's help will pull him through.
---Barb
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