Today has been quite a busy day already, both for you and for mommy and daddy. Now you actually haven't been awake for most of it but you have been rather active. Mommy told you yesterday about your lung not looking so good and even though that was frustrating for us (and for you too I'm sure) it sounded like things were getting better last night and you might be ready to get that breathing tube out today. You worked hard yesterday trying to make some progress and it looked like you were gaining some good ground.
So as usual the doctors wanted an x-ray this morning and it didn't have any good news to share with us. Your right lung was completely collapsed again. The doctors were shocked because you were doing so well and mommy and daddy were pretty depressed about it because we thought we were past all of that nonsense. But we are not there yet, we still have some work to do. So the doctors ordered another bronch for you today, this time to open that lung up and get you back on track. No time to look around, just get in, get clean, get open, get out. And that is just what they did. They pulled some "giant gunky stuff" out of your little right lung but it is open again and you are getting some good full breaths finally. Sorry we had to go through that buddy, but hopefully that will be the last one.
Early this morning your daddy had to go talk to some people about maybe getting back to doing something productive with his time. Now that isn't to say that our time together here isn't productive but unfortunately there is no one that is willing to compensate me for that time and the fact of the matter is eventually we will have to get back to normal things like paying bills and trying to find a place to live that isn't Children's Hospital. Your mommy was here with you though, and she talked to all the doctors to make sure they had things straight and you were getting back on track. Apparently she does a pretty good job of keeping up with things because one of the doctors said they should just hire your mommy. I don't think she will stay here once you are gone though, no matter how much she loves helping little kiddos like you.
Once the doctors decided what to do it was just a matter of logistics before you were going to be zonked again. They had to get a new tube for you, get the doctors who were going to do the bronch ready, and then they had to get you all doped up and sleepy so that you wouldn't throw any fits while they were trying to clean out that lung. Lucky for us mommy was able to snap a pretty cute picture of you before you went back to sleep town though...
Once the doctors had you all situated mommy and daddy went to meet another one of our heroes, and one of yours too (even if you don't know it yet). A little boy on the other side of the United States came to Cincinnati to visit some of the wonderful doctors here (some of them are the same ones you see) and talk about his journey with CHARGE. His mommy and daddy were nice enough to agree to meet with us and let us meet him too. His name is Ronan and he is a big part of the reason daddy was able to get through some of those tough nights here at the hospital when you were first born.
Ronan is another little guy who is going through a lot of stuff and fighting his way through his diagnosis and surprising everyone along the way. He has CHARGE too and he is a little bit older than you but in some of his baby pictures you two look like you could be brothers. His parents have a blog kind of like yours, except theirs is a bit more informative where as mommy and I tend to ramble on about things, and on that blog is a little video that is pictures of him as he has gone through these first sixteen months of his life. That video is one of the most beautiful things we have ever seen and one of these days you will get to see it too. The first night after we found out about your possible CHARGE diagnosis daddy was sitting all alone in your room in the dark, scared of the unknown and searching the internet for answers when I found Ronan's picture. My heart jumped out of my chest because the first one I saw looked just like you. And as I watched that video I knew that we could make it, we could fight too. Ronan and his parents helped to show us what is possible and for that they will always be our heroes.
And now here we are back in the room, waiting on the doctors and listening to one of your favorite nurses tell us stories about lizards and fish. You are resting and getting ready for your big chance to get the tube out, and this time I know we will get it done. So sleep tight little man, get ready for another big push and when things feel a bit overwhelming just think about your hero Ronan because I know he will be pulling for you too.
Mommy and Daddy love you Connor.
- Daddy
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