Yep, its daddy again, and its been a little while since I have written you anything because mommy and I have either been bombarded with doctors and specialists or trying our best to wrap our brains around what the doctors call "the bigger picture". I know mommy updated you on how you have been doing and all the things that you went through the other day (it was quite the laundry list of procedures) but I think maybe its time to talk about the other stuff we have been talking about the last few days as well. It isn't bad stuff per say but we have had to take a lot in and adjust our outlook on quite a number of things in the last seven days, and not all of those adjustments have come easy. In fact, most of them have been everything short of physically painful. But don't get too bogged down, there are a few good things coming at the end too.
So lets get to the meat of the quandary at hand right now. No beating around the bush or putting it politely, you have been through enough that we want you to know exactly what has been going on. Over the course of the last seven days your mommy and I have had to sit down and take a long hard look at "the bigger picture", or in slightly more terrifying terms, "quality of life". Not just for you either, for us and the rest of our family as well. Now this is really only terrifying because of the fact that the context in which it is normally used is terrifying. When people, or little boys, are happy and healthy they have a quality of life. Some good, some bad, most somewhere in the middle, but it is a quality of life none the less. Most of the time when people talk about quality of life though, they refer to someone who is in bad shape, or someone who has a grim future ahead of them. Sounds scary right? Well the conversations we have had over the last week have been about some grim things, but more about weighing those grim things against the possibilities for good things as well.
As I am sure you can imagine this hasn't been an easy set of conversations, mostly because the doctors don't seem to have their crystal balls working quite right and can't predict the future. Sometimes we forget that forecasting future events isn't a class offered in medical school and we get frustrated about answers like "we just don't know that yet" or "we will just have to wait and see how he does". But the bottom line has been that neither we nor your doctors know exactly what lies ahead for the three of us. Here is what they do know:
1) your little heart is as strong as they could have ever hoped it would be and maybe even stronger
2) your little lungs, despite some earlier concerns, are strong and working just like they should as well
3) your little brain is showing us all the signs it should be showing for a little boy your age
4) you have a lot of challenges you have to face yet
5) you will have to work really hard to get past all those challenges
6) mommy and daddy will have to work really hard along side you to help you get past all those challenges
7) because of your CHARGE diagnosis there is just no way to tell how well you are going to do until you have a little bit more time to show us
Those sound kind of vague don't they? Well that is what mommy and I thought as well. We weren't very satisfied with those answers when we got them, even though every doctor told us the same thing. We wanted their crystal balls to work but no matter how many times we asked the answers were the same. Facing the unknown is scary, facing the unknown with the chance for bad things happening just as much (if not more) than good things is absolutely terrifying. But that was, and is, the reality of our situation. The statistics aren't good for little boys with your specific set of problems. The information is daunting. The images are saddening. The "bigger picture" looked pretty bleak.
The doctors told us you were going to need a trach. The doctors told us you were going to possibly need a vent at home. The doctors told us there was no way to know how long you would need either of them. They told us you were going to need up to sixteen hours of nursing support after you left the hospital, that you would need special machines and mommy and daddy would need all kinds of training. They said that you would need someone to watch you every minute of the day as long as the trach is in. We wouldn't be able to take you anywhere in the car unless both of us (or another trained adult) were there. You weren't going to be able to talk for an undetermined amount of time, maybe ever. You were not going to be able to eat, again for an indefinite amount of time. When were we going to be able to take you to see Gigi and Grandad Rooster? When would we hear your little voice? When would mommy and I ever be able to have some alone time without worrying ourselves to death about you? Would you go to school? Would mommy be able to work ever again? Would you be able to play with other little boys and girls? All of those things scared us for a lot of reasons, for you and for us. But the only other option was to tell you goodbye.... The little bit of light that we had been holding on to so tightly was going out right before our eyes.
That is what we thought anyway. Then we started thinking about some of the things the doctors were saying and we realized that we had been missing something. They told us that there could be some really bad repercussions of you getting this trach and that there was a chance you could not do very well at all going forward. But what they ever so cautiously told us was that all the signs you had been showing were pointing to the fact that you weren't headed down that path. Instead you have been telling us (in all the little ways you can right now) that there is every chance you could be playing with friends and going to school and talking and eating and running and even going to visit Gigi. They couldn't predict the future but they could tell us that right now the signals you are sending paint a pretty good picture for the three of us. That picture will never be what we thought it would be and it will never be "normal" (but we have learned normal is relative to a degree we had never before comprehended) but it can very well be a very good picture, maybe a great picture.
But, even though we had this realization, mommy and daddy were still apprehensive about letting the doctors put in the trach. We both felt terrible about it and were sick about it all week long. We decided it was the best decision for you but we were still so uneasy. Then we received a gift. The kind of gift that comes without warning and without asking (like the good kind of Christmas gift we talked about before). After I wrote your note about catching up we received comments and stories from other families who had been in our shoes. They told us to hold on to hope because they had been in our shoes, they had faced the same scary scenario, and they had come out on the other side. We saw pictures of some beautiful little CHARGErs (I think that is what mommy called them?) who went though this and come out on the other side doing better than expected. I'm sure you saw but you also received a note from your little buddy Ronan, and he told you he was pulling for you too. It was these notes that carried us through Tuesday. They helped us see that even though things might be gloomy now they also might be bright and sunny one day as well.
So we held on to each other tight and we walked down with you to the operating room and there stood your ENT surgeon and right before we kissed you good luck he told us just how hopeful he was for you and your future. Mommy and I were still nervous but we felt better and better and better. When you came back from surgery you looked like... well you looked like you had just had a bunch of surgeries. But you rested all night and when we came in that next day you will never guess who we met.
So keep on sleeping, keep on healing, and keep on looking as cute as you do. Your mommy and I are so proud of you for yet again showing us that you can handle anything, even if we can't. You are going to just keep showing us more and more I think. Maybe this is the first step to something, maybe its the opening of a door, just enough to let us see the light making things brighter.
We sure do love you Connor, with all of our hearts.
- Daddy
5 comments:
Well written once again. First, I wanted to say you are all three are amazing! Second, that picture of Connor is great. Even his coloring looks awesome. Third, any training you need me to go through (even if its for the company, or to have another family member trained) I will. I've been through Childrens Trac CPR class before and will do it again. Love you guys and so proud of you.
So happy to hear that things went well with the trach! Connor is such a cutie and is such a strong fighter!!! Keep fighting hard little Connor!!!
Tons of tears streaming down my face! Oh I remember those conversations with doctors so well. We were told our Evie was blind and deaf and would never do much of anything and here we are 20 months later with a girl that can BOTH hear AND see and jumps around like a little froggie after her sister.
As far as nursing goes, we actually went home with no nursing care. It's not a path I would particularly recommend (they couldn't find anyone in our area), but it was doable. Evie did not have a vent though, so that complicates things, I'm sure. We found a nurse when Evie was 7ish months and she's amazing. She comes 4 days a week, 9 hrs/day and gives us the help we need so that I can play with our older daughter or run errands. It's not what I imagined having two little girls would be like, but we've settled into this normal. Basically, if you get nursing help, that's great, but know that as you get comfortable with his care, you can always decrease those hours to what suits your family best.
And he looks AMAZING! What a beautiful little boy you have! Oh I am just so happy for you all! We'll keep praying that things continue to go smoothly, he can get off the vent, and you can go home as soon as possible!
I cannot get over how great he looks in that picture! Great job this week Connor, you've been through so much. One thing I've learned about our CHARGErs is that they always do far more than any doctors expect.
As tears flow down my face he looks amazing! And although he looks uncomfortable, I guarantee he is much more comfortable with this then all that stuff taped to that pretty little face. Good luck to all three of you and I can't tell you how much I enjoy your updates.
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