Hey there Little Buddy,
So you gave us another little head fake last night, you are better at that than Allen Iverson in his prime lately. Mommy and I spent all day long sitting with you and making sure you were good and happy and when we finally left you last night we felt pretty confident that you were going to have a quiet and uneventful night. HEAD FAKE. It wasn't a terrible night, you have certainly had worse, but it wasn't the quiet, peaceful, restful night we had hoped for either.
Mommy and daddy decided that if we could catch up on some sleep this morning then we would take advantage of that after the last two nights. It sort of worked, we slept a little bit more than the two nights prior, but when I got over to the hospital around eight or eight-thirty I walked into your room and into what looked like the leftovers from a war zone. Your high flow cannulas were long gone and you were back on your CPAP mask with full head gear. What was even worse was the intubation setup that had been set out on the table next to your bed.
What happened next was kind of a blur because daddy lost a little bit of his temper with the nurse. It turns out that you had an x-ray around five this morning and decided that it was the end of the world. You flipped out and raised your heart rate and your respiration rate high enough that the nurses had to start pumping you full of happy medicines. That didn't work and you didn't calm down and then you blew a tire. In this case the metaphor likens a tire to your lung so perhaps I should say you blew out the tires on the left side. Episode number three in about as many days.
After that we talked to the doctors and found out that they were going to do some tests to find out if there was something you weren't telling us. The first of those tests was your CT scan. They actually brought one to your room this time, you are that important. Well you flew through it but the results were less than ideal so Dr. Ilias came to talk to mommy and daddy personally. He explained that the test found something that wasn't related to the episodes at all but it may end up being important. Then again it may not, but I know you would have it no other way.
The CT showed that you have two blood clots in your head. The good news is the clots are small and they are not the kind we need to worry about. The other good news is they don't think they will be "clinically significant". The kind of bad news is that this type of clot, of course, is something that is "really quite rare". The doctors don't see it very often and they therefore need to do even more tests to see what is going on and put you on some medicines to make sure nothing bad happens with them in the mean time. That means a field trip next week buddy.
Next, because of your episodes lately, we had one of your respiratory therapists decide that your anxiety from the CPAP needed to stop. She asked mommy and daddy if we would be interested in trying some new RT equipment and participating in a research study. Now I don't want you to get a big ego or anything, but this is your third (or was it fourth?) research study already. But anyway, they took this really cool strobe light imaging system and mapped your face so that they could mold a mask to better fit your face and help you deal with the CPAP better. Pretty cool isn't it?
I don't know if you have noticed a theme here yet. No? Well we keep talking about your "episodes" and how those "episodes" are happening quite a bit and are now in the driver's seat around here. This little sitcom you are putting together for us is not much for entertainment and if mommy and daddy and your doctors have anything to say about it we are going to try and get that one replaced with the Connor version of "the voice" before too long. I hope you don't mind but I swear it will be better for all of us so chew on that one for a while.
Now we are hoping for an episode free weekend starting with a calm night tonight, lets work together on this one. All three of us need some time to relax and some time to get caught up on some much needed rest. So good night, sweet dreams, and sleep tight.
We love you Connor,
- Mommy and Daddy
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