I received some good advice about how to talk about everything that we have been through, and about facing our uncertain future. The advice was to stick with what you know. So I am going to list some things that we do know and don’t know. This may trigger a lot of emotions for you, so maybe have a seat.
We know that Isaac has ROHHAD (Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation). It is an extremely rare and very complex syndrome. There is no cure. He is not going to “get better” from this. We don’t know how he will respond to the treatments he is receiving. We hope they will at least keep him where he is. Meaning that we can manage his symptoms and he will not get any worse. This diagnosis is considered life threatening and life limiting. Right now Isaac’s symptoms are manageable, very complex and difficult, but still manageable. When I asked the doctors in Boston “Is this considered a terminal diagnosis?” The response was, “We don’t expect him (Isaac) to leave us in the next few months or year. But we don’t know a life expectancy. You would qualify for make-a-wish and things like that.”
This life-limiting diagnosis and the unpredictable nature of it, means we don’t know how much time we get with Isaac. Other patients with this disorder appear to develop their symptoms slower over time, whereas Isaac seems to have progressed quickly with many symptoms all at once. The doctors said this is “concerning.” Of the known ROHHAD patients, there was one who lived to their 20s.
We know that we will bring Isaac home. Probably as soon as a few weeks from now. There is a lot to happen before then. Isaac will receive an IVIG treatment on Monday. It is an infusion that takes 2 days. After that we focus on getting on the supplies, equipment and training necessary to have Isaac at home. It is extensive.
We don’t know how we are going to do all this. But we know that we will figure it out.
Isaac requires assistance with breathing via a ventilator when he is sleeping. Tom and I will receive training on how to operate the machine and care for a child with a tracheostomy. Isaac also needs around the clock care. We are praying that we are able to get nurses in our home for night shifts.
We know that our lives are not going to be the same. Our world has been shattered and we have to figure out how to put the pieces back together.
We know that we are moved by and eternally grateful for the support we have received. The cards, phone calls, messages, checks, donations, meals, gifts, prayers… thank you. The town of Tuftonboro has been donating their sick and vacation days to Tom while he is on unpaid leave. Our community is incredible.
We are thinking a move will be in our future soon. Our tiny home isn’t ideal for our families new needs. We will need to accommodate 2 more adults and Isaac’s needs. My mother will stay with us to help care for the children and hopefully we will have a nurse with us most of the time. If anyone has any leads or info for our area that would be a great help.
Our 10 year old asked the question “Why did this have to happen to him? Why couldn’t it have happened to someone bad instead?” I let her know that nobody has an answer to that question. I also told her that I do know that Isaac came to us because he needed us. He needed a family that is strong, smart, and loving. He needs us and we are the perfect family for him. And being the wise soul that she is, she understood.
Photos: Rainbow from our hospital room and Big sister reading a bedtime story.