Palliative Care: The Hospital Again

J3, my youngest, has been turning purple and breathing heavily. His pulse/ox has dropped about ten points. We took him in to see the cardiologist and my fears were realized. Although he is a year younger than we originally discussed, it was time to process with the third round of surgeries. Did we know it was coming? Yes. Were we ready for it? No. Do I wish we could postpone it until this summer? Yes. Do I think we will be able to? No.

            I start school again in a little over three weeks. My older two boys go back to school in a few days. We are terrified. Why we? Because my husband is by my side. This time I am determined to remember this. At the mere mention of returning to the hospital I break down into tears. Why? Because every time we go in with him, there is a chance that we will not walk out with him.

            His first surgery is on Jan. 5^th. It is a heart catheterization, which will tell us exactly how things are going and determine how soon we need to do surgery. Personally, I would prefer now. I would chose to get it over with rather than have it hanging over our heads and the semester. I might miss a week or so of school but it is better than missing during midterms or finals.

            I realize that this sounds selfish, but this disrupts the lives of my other two boys as well who have to live without their parents, but at the same time continue their educations like nothing is wrong. Of course, that is asking too much. I understand that they will act out and they will have earned that right to voice their disapproval with the situation they have zero control over. This disrupts my mother’s life who will drop everything so that she can come down here to care for the children in my absence. The life of my father will change when he can no longer come home to his wife. And it disrupts my husband’s life who has to balance work and the hospital, being by my side as well as our son, but also needing to collect a wage to feed and house everyone.

            We are not ready for this, but we will be packed for more than just a day trip if necessary.

            I wrote that to be released on Jan. 4^th, but I got side tracked by the sheer number of things that needed to be dealt with. I have zero plans to hash out all the details. However, the end product … was a continuation of where we already are.

            The heart cath went great. J3 is doing better than we expected. They are supposed to discuss his case either today or next Monday and schedule his Fontan procedure. Are we nervous? Of course. But once again I have reached the peace that comes with “God’s will be done”. I hope I get a long life with my son and I will love to give all the happy go lucky news, but the facts are:

1)      J3s heart is unbalanced. One side works twice as hard as the other. It will give out and he will need a heart transplant. The doctors told us this at the start of everything. If we are lucky we will get ten to twenty years before this happens.

2)      The Fontan will fail. This we did not know. There are some indicators to watch for but even the doctors do not know why or when it will fail. It could fail within the next six months or it could fail twenty years from now.

3)      We are blessed to have him in our lives and while he is fighting we will fight with him. We will give him the best life we can and as his is a very happy boy I can only assume we are succeeding.

This is yet another aspect of our lives. I am preparing for school. The older two boys will continue school. My husband continues to work. And for those moments when we can come together and etch out meaningful time together we do.