Wednesday, February 29, 2012

We really cannot go anywhere!

Since we have the hospice care, Jagger does not really go anywhere, and since he does not like being in a car seat,he has not problem with that. He was not always that way and before he was 4 months old, we drove to Hilton Head and to Orlando, but after that even the shortest trip was a total nightmare.
Well, we had to go to the pulmonologist, one of the rare specialists we have not seen yet, but since Jagger's disease will affect his breathing at some point in the future, our genetic nurse asked us to go see Dr. B, since she specialize in Mitochondrial kids.
Unfortunately, she is located on the other side of town about 30 minutes drive.
The way there was not too bad, but Jagger was getting really agitated the last few miles.  The appointment went really fast and we did not have much wait, which is always a plus with Jagger.
Dr. B. was really good, she explained to us how the disease is going to progress (respiration wise) and gave us a few tricks to try to help with his secretions. She even prescribed a new drug since he has some sort of allergy to the Atropin (well more like flushing and increase heart rate). Hopefully that med will work, but only time will tell and we can always give Atropin if we must, we just have to watch him closely.
I will not go in details on everything she said about his disease, but it is not going to be fun and just the simple task of breathing is going to become more and more difficult for him:(
Anyhow, Jagger fall asleep at the doctor (see pictures) but he woke up when we tried to put him in his car seat, and then the fun started!!
The 30 minutes drive home was awful, he was screaming and arching, and he was almost getting out of his car seat on his own despite the seatbelt! Unfortunately when he gets like that, there is very little we can do, so I just tried to get home as fast as I could (safely of course) so we could take him out of the seat.
One effect of his disease is that when he gets upset or  agitated it is very difficult and takes a very long time to get him to calm down, and usually requires the use of strong medications.
Today was no exceptions, after we got home, we had to give him morphine several times just for him to get back to baseline.
So moral of the story, unless it is an absolute must, we are not taking Jagger anywhere, and I am sure he is thankful that he gets to stay home and away from the car!


  1. I'm sorry that you had such a rough time with the car ride but thank you for sharing these pictures, he is just beautiful! The first pic is absolutely adorable!