Hey Bubba,
Here we are having us a little boys time for the first time in a little while. Your mommy had to run out and pick up a few things so you and I are spending some quality time together on a sunny Saturday afternoon. Now quality time has come to mean a lot of things over the last several months. Sometimes quality time is cuddling in your boppy, sometimes its playing with your toys on daddy's lap, sometimes (like today) it means repeatedly putting your pacifier in your mouth as you do your best to fight off the sleep your body is telling you it needs. Oh, and I must not forget that sometimes (also like today) it means changing diapers that make my eyes water. Awesome.But all in all its nice to spend a little QT together even if it is just doing the little things that are part of your day.
In the last week a lot of things have changed for you, for all three of us really. The most significant one was obviously the big move out of the CICU that we had come to know as home. On Monday we came down here to the TCC (Transitional Care Center) and have been trying to settle into life here all week. Some days the settling has gone better than others but that is to be expected when such big changes are made I suppose. Your room is bigger and feels a little bit less like a hospital room. Your nurses and RTs are in here checking on you a lot less. Even the doctor visits seem to have slowed down quite a bit this week. All those things are signs of progress, steps in the direction of a life outside of Children's Hospital.
Some of the other changes that have been made this week include you getting off the big hospital ventilator and adjusted to the laptop ventilator (LTV) which is the one you will go home with. That has been a pretty quick switch and you seem to have handled it quite well so far. The doctors keep changing tiny little settings here and there to adjust your breathing support or the extra pressure going into your lungs or even the amount of time between the breaths that the vent gives you. All of these little changes seem to be helping you and overall I would say you seem much more comfortable breathing these days. Who knew such little things could do so much?
The doctors have also continued to wean you off your sedation medication, one itsy bitsy baby step at a time. They are basically attempting to take you off of them at a snail's pace, assuming the snail is moving in slow motion through molasses that is. But as usual the doctors seem to know best because even though the changes they are making seem so little to your mommy and I they have an affect on your little system. Every time they change something we see a day or so of the fussy Connor we saw months back and it scares everyone but like you have always done in the past, you show us you can handle it and get things back under control. Of course that happens on your schedule and not ours but that isn't new either. Since we are going to have a decent chunk of time here in the TCC I think maybe the little steps may be the best way to go.
Let's see, what else? You have spent some time on your tummy this week and will spend more time that way as we go forward because its good for you for a lot of reasons. You don't seem to like it much right now but I think that may change as you get used to it. Its all about the slow and easy approach. You have also gotten a new trach this week, well actually two new trach's. The first one was Tuesday and mommy put that one in with no sweat at all. The second one was on Thursday night and your friend Peter from the ENT department put that one in. He had to do it because your doctors up here decided you needed a bigger one. The one you had was a 3.0 trach and they said you were big enough now for a 3.5 trach. Now all that amounts to is 0.5 mm bigger but as the doctors explained it to us it is like going from breathing through a straw to breathing through a garden hose as far as you are concerned. Another little thing amounting to a lot.
I think that might be about it for the changes, at least that is all I can remember right now. Your mommy and I have had to get used to a few new things this week as well but they are more about us being so used to things up in the CICU that we felt comfortable with all the policies and procedures and people and down here we have to learn all those things again. Its not a bad thing but habits are not easily broken.
There is one last little thing I want to tell you about though, and it has nothing at all to do with medicine or the hospital. This week, despite the fact that it has been a good week for us and for you especially, has been kind of a draining week for your mommy and daddy. You have been trying to adjust to a new schedule and that hasn't been easy and therefore you have been fussy at different times and really unable to sleep as much as you normally would (and that makes anyone mad). So that means that mommy and I have spent a lot more time this week trying to calm you down (or put your pacifier back in your mouth) than we have been the last two weeks. That's tiring stuff and sometimes we get a little bit frustrated but we have found that there is one little thing that seems to fix it all. One little thing that makes all that frustration melt away and makes us happy again. And that my boy is your smile. Parents talk about it all the time but mommy and I are experiencing it first hand these days. We can be so "done with everything here" as your auntie Beth says but one little smile out of you and we are back in the right frame of mind.
Keep up the good work little man, we are awfully proud of you.
We love you Connor.
- Daddy
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