Bumps...

Hey Bubba,

Before we get to anything else I am going to start off and just say I'm sorry. You know why, and in case you forgot I'll tell you again in a minute but I had to say sorry before going any further.

So we learned a lot the last couple of days, and we still have some questions about a few things. We have now learned how to clean and care for your trach, we have learned how to clean and care for your g-tube, we have learned how to cath you, and we have learned how to suction your trach. Maybe that doesn't sound like all that much learning, and maybe to a person who has any background in the medical world at all it wouldn't be. But for your daddy that is a lot of learning. However, I do love to learn so that part isn't too bad. When it comes to the "doing" part I am not nearly as ready to go as I may appear.

I have been trying really hard to remember that these things we are learning to do right now aren't forever and they are things that you will need when you finally do get out of this hospital. Keeping that in mind has gotten me through cath'ing you (which to be honest I never thought I would be able to do after watching the first one) and it has gotten me through cleaning your g-tube (here again I thought I would toss my cookies if I ever had to do anything with that tube) and it got me through suctioning your trach (this was probably the easiest but that was because I had the help of your respiratory therapist). Today though, we ran into a problem.

Mommy and I were getting all ready to do your trach care again (this is day three) but this time she was going to be the one holding your trach in place and I was going to be the one cleaning your little neck and putting all the ties and padding back on you. This sounded quite simple and after watching mommy and a couple of your respiratory therapists do it I thought I should be able to do it just as easily. So the first two parts went pretty well, we got all the stuff from today off and I cleaned up everywhere to make sure you weren't hiding any of your slimy stuff. Next it came time to put your new collar on and fasten it. Here I realized that the dexterity in my fingers is somewhat lacking. It took me forever to thread that little velcro strip through your collar and get it ready to fasten back down. I was all kinds of stressed out and I am pretty sure my heart rate was higher than yours the entire time I was working on it. Unfortunately that was the easier part. Next I had to try and put a little padding strip down on your neck and chin and get it under your trach collar. This is when I realized that having hands big enough to palm a basketball is actually a bad thing. I fumbled around with it and tried several times and despite my best efforts, and a bucketful of sweat dripping from my forehead, I could not get it on correctly. Thankfully mommy kept her cool and got it done for me.

The worst part about that experience was the look on your face though. You were so upset and it was clear that you were really uncomfortable during that entire debacle but no matter how hard I tried I couldn't seem to make it any better or go any faster. For that I am so sorry. I am told that it will get easier with practice and time and even easier than that when you get to growing a little and your neck gets a little longer so we have some room to work with. In the meantime though I feel terrible about it and dread the thought of doing it tomorrow. Just know that I am doing my best and will do everything I can to get better at it so it isn't so hard on you.

Now even though we have had some answers come out of the last few weeks we have had a few questions pop up in the last few days. It seems that something is bothering you again and no one knows what it is. We thought you were having your "episodes" before because of your upper airway problems but they have started happening again. The trach didn't quite fix everything like we thought it would, or so it seems. Mommy and I spent a long time with you last night trying to calm you down after your heart rate and agitation made a slow climb into the unhealthy zone over the course of a few hours. It took some medicine and a trach change to finally calm you down enough that you could sleep. That didn't work for too long though, you needed another big dose of meds early this morning before mommy got here to keep you calm. Now it has happened two more times today and the doctors have no idea what is going on or what to do to help. We are trying buddy, and we are hoping that this is just another one of those bumps in your road out of here.

Now there is some good news from today but that is mommy's story to tell and I am not going to spoil the secret. She will write you a note later or tomorrow and fill you in but it is some pretty exciting stuff. In the meantime lets try and get some rest since you have been so agitated and worked up today. I think we could all use a good night's sleep. So sweet dreams little man, keep on growing and keep on fighting, you are the toughest little guy your mommy and I have ever met and we are SO proud of you every day.

We love you Connor.

- Daddy