Today up at the hospital visiting Max I was talking to one of his kidney doctors who has known us since their NICU days and he made a joke about me always wanting a crystal ball and for him to predict the future for me. It’s true that I always want to know what does this mean for future? What does the future hold? To some extent that is just human nature, we want answers regarding what lies ahead, and to some extent it is related to my Type A cannot handle surprises need to be prepared personality. About half way through a TV season or book, I’m googling the ending because I cannot handle waiting!
And then part of it is having a fragile chronically ill child. When you deal with life or death issues and have for years, those future questions just seem that much bigger and more urgent. Instead of my wondering how Max will do in school or what sport he will be good at, I’m wondering will he ever go to school? Will his breathing get worse or become stable? How long will he be with us? And what will that time look like? Will he ever get better or will he stay in and out of the hospital? Those are the questions I want to ask the crystal ball. Those are the questions I ask God. Those are the questions Al and I discuss regularly.
But as I thought more and more about this idea of a crystal ball or more generally answers about the future, I realized that sometimes the things we do not know yet protect us. I was imagining that first day at our downtown hospital three years ago when they sat us down and told us that with congenital nephrotic syndrome, they would need central lines for daily IV infusions for months in the hospital and then dialysis for months at home and then ultimately a transplant. Well, many transplants over their lives…
Imagine if… the doctor had been able to add: oh and they will both lose a lot of their hearing. And after you make the big plunge to dialysis Addie will go into heart failure. And then she will have a big complication and end up on hemodialysis instead going to the hospital 5 days a week. And then you will find out that Max has severe brain damage and go on a many month long quest to work out why, only to never truly know. You will transplant them both but Max will have a scary RSV infection afterwards and then have an episode of rejection within 6 months. You’ll think you have finally got the hang of things and feel all optimistic for an uneventful year when Max unexpectedly nearly goes into a coma at home and you then spend the next two months realizing he needs substantial breathing support to stay stable.
I can only imagine if they had told me that. I guess I would have had a heart attack? Or cried so many tears I dehydrated myself? I certainly know I would have felt so defeated I would not have had the strength I needed to cope back then. I already felt like we knew too much. It already felt daunting. The fact that there was no crystal ball and we couldn’t have known half of what was to come- that was absolutely a blessing.
The saying Ignorance is Bliss has some merit to it (although do not tell my students I said so!). We had absolutely no idea when I was pregnant what was coming and I was such a happy giant pregnant lady. I’m grateful for that time I spent dreaming and being excited. And I’m thankful that I have realized things in stages, as I have been ready to face a little bit more. God knows I cannot handle everything at once so it’s his blessing that the extent of what Max has to go through has been revealed in stages.
So, here we are with a new unknown… what we do know right now is that Max has something called ‘nocturnal hypercapnic respiratory failure’… which means that due to his low muscle tone and atypical brain functioning when he sleeps he is not able to breathe effectively enough to keep his carbon dioxide levels down. This is what caused November’s drama and we continued to watch him afterwards and saw the same pattern heading to that same point. Thankfully we got it under control before it got that serious this time. He seems to get enough support by using a bipap machine at night or during naps, any time he is asleep. The machine seems to make his breaths more successful and are keeping his blood levels in a safe range. So, he will come home with this machine and we will set it up anytime he sleeps.
Beyond that, there is lots we do not know like why this happened now? Will it ever get better? Will in continue to get worse? Will it be enough if he gets a cold or pneumonia? Will he need to be trached in the future? If so, when? And how would he handle that?
Those are the answers we do not have. And you know, I think I am okay with that. Because we know what we do need to do for Max right now and that is what we need to know. And we will figure out what this new ‘new normal’ looks like for our family and we’ll figure out how to be happy and enjoy the babies with where we are now. And that really is about all we have the strength or energy for so better not to borrow future problems anyway.
Here's the other thing: I was driving to the hospital this weekend and I thought ‘man three years and I’m still making this drive. Visiting this place I have spent so many days, lived through so many hard times. I cannot believe this is still such a big part of my life.’ And I thought those things with a moment of self pity and it’s not fair. And then I thought about my sweet babies born with a life threatening condition. I thought about all the scary things they have been through. I thought about that ambulance ride in November. And I remembered there is something far far worse than still making lots of trips to the hospital.
I expect these hospital stays will just be part of Max’s life. I would love to be wrong but I expect every couple of months we’ll be going back for something. This breathing machine is going to be part of Max’s life. The doctors and nurses are part of Max’s life. And we will miss all of those things so much if a time comes when we don’t have Max. We will wish we could drive to the hospital, we will long for doctors who tease us for our neurotic tendencies, we will think the house is silent without the machines beeping. If I could look into a crystal ball, I’d be far more afraid of not seeing the hospitals and equipment than I ever could be of seeing it.
So, we count it as a privilege to take care of this sweet boy. We are grateful to walk in the hospital room and see his infectious smile. We will rejoice when this bacteria clears up and we can have him home. We will gladly set up his breathing machine, suction him as needed and welcome his nurses into our home. Because we’re lucky to still have Max, to be able to continue to take care of him and to be blessed by his precious smile and sweet spirit. If we had known what all we would go through with him, we would have thought it’d be impossible, but he is worth being strong for. He is a joy to endure these things with. And we have been able to smile through far more than we would have known.
So don’t worry Doc, I don’t need that crystal ball after all. Although, I would really like to know how this season of Grey’s Anatomy will end…