It's been a long 2 weeks and so many things have happened during this time. I am over the respiratory infection, which is a good thing. After being in the hospital for 200 days, my parents had a family meeting with the medical staff to discuss my progress and long term treatment plan. Unfortunately, over my little lifetime of struggling with my breathing problems, my little heart has been working so hard to keep me oxygenated. As the doctors put it, "it's a race between my heart and lungs. Either my lungs have to get better before my heart gives out." I have developed what is called right ventricular hypertrophy (a thickening of the heart muscle). This was pretty devastating to hear, but we have not given up praying. The doctors say that my condition is moderately severe and their prognosis is not very promising. They are doing everything that they know about to help give my heart a break, but they cannot promise anything. The nurse told my Mom to cross her fingers, but my Mom told her to uncross her fingers and put her hands together and PRAY! So that's what we are doing and that's what we are asking all of you to do for us.

At Least It's Not Swine Flu

Well, the one thing my parents have been worried about happened, I'm sick. I caught a respiratory virus called Para Influenza. It's an upper respiratory infection and has caused me to have a lot of secretions and of course, a hard time breathing. The good thing is that I am now in an isolation room, so hopefully it will help me stay away from other outside germs. Bad news is that I had to be paralyzed again so that I can let the ventilator breathe for me without me trying to do it on my own. I was working so hard and I wasn't getting enough carbon dioxide out, so I need to take a rest. They should have me off of the paralysis meds by Monday or so and hopefully I can get back on track. Overall, I am still doing pretty good and continuing to pray for better health.

So, it's been a busy couple of weeks for me but things are going pretty well. My incision is pretty much healed and I have had the trach tube changed a few times with no problems. I am adjusting well and was even able to take a few bottles. I've continued to ride the roller coaster as it seems that my gassy fussiness is continuing to prevent too much weaning on the ventilator, so we are just trying to ride this colic thing out. We've read and heard a lot that colic usually gets much better by 3 months, so we are praying that it will be better for me soon. I am breathing pretty good, but my CO2 levels continue to skyrocket and then magically go back down on their own schedule. Because my little heart has to work really hard to oxygenate my lungs, it is causes a little thickening on the right side. We are not going to worry about it too much right now, but definitely have one eye on it. I am getting some medicine to help relax the heart muscle, so it doesn't work so hard.

It's really hard to say right now but the doctor told my Mom to hope for Christmas, not Thanksgiving.