Update June 2010
Okay so a lot has happened yet again. Alexa did not respond to a pain medication that we tried so she did have her decompression March 2nd, 2010. All went well with that. There was a lot of scar tissue and he did find things that needed fixing that were not visible on the MRI, so over all we made a good decision to go ahead with the surgery. Alexa got very sick afterward and could not tolerate anything by mouth. Eventually they consulted her GI Dr's and they converted her G-tube to a G-J tube so that Alexa could go home with out tolerating by mouth. The interventional radiology dept. accidentally put in the wrong type of tube so there was a lot of confusion and Alexa had to undergo the same procedure the next day so that we could go home. (very frustrating) After all that was over Dr. Ganesh retested her sweat test and Alexa finally came up negative for CF!! He can't explain it. Her surgery sould have had nothing to do with her sweat test, but whatever...She is still going to stay under his service just in case and for her asthma, but he has taken the CF diagnosis away!!
AJ did finally forcefully give in to the surgery that he needed for the last 6 months and he had his shunt revised April 6th. He has had so many complications since it is rediculous. He was readmitted with in 24 hours of discharge, then her was later discharged and then readmitted because we thought his head was infected. After 3 days of just waiting for test results we found out that it was just strep throat!! Then we went home and finally made it to his post op appt when we thought everything was good and the surgeon says well let me tell you how you really are!! Here they found high White Blood Cells on the shunt tap they did but the infection was not far enough along to catch anything on the culture, so we think that as soon as he comes off the antibiotics for the strep it is only a matter of time before his really is infected....What...really...so about a week or so later yet again the fever and sick...back in..shunt tap...wait...nothing happened...AJ got better and his WBC count on this tap was a lower number!! We finally go home again and AJ makes it to his concert. A kid knocks him in the head while everyone was sitting on the floor. AJ doesn't say anything because he said it wasn't a hard hit...next AM AJ's head was all swollen down through his right eye!! Then AJ tells me what happened. Surgeon says to get him up there. BY the time we are in the ER swelling is decreasing and by the time the resident showed up it was just about gone. Next night happened again, they started playing with his shunt settings thinking that his pressures were too hight to have it all drain through the tube. AJ eventually gets sick from the lower pressures and it is not working anyway. AJ is still swelling at night time. Dr. Dias agrees to put his setting back to were AJ liked it and said that hopefully the swelling would eventually stop. As long as AJ is not having any symptoms and the swelling goes away upon sitting up then he will let it go. Well over a month later and AJ still swells when he lays flat. Only a couple bad mornings, so we continue to wait to see if it will stop. AJ is getting used to the swelling and it goes away immediatly when he changes position.
Just took the kids on a mini vacation to visit Crystal, Scott, Drew and Kyle. Had a blast. I realized that ALexa falls asleep constantly! She did restart her cough when I took her to camp June 12th and I restarted all her meds. I hope when things calm down she doesn't sleep like this all the time, or we will have to consult someone else. Today we also learned that she lost 2 lbs in 3 weeks:-) The good news was that after her G-J tube Alexa had gained 7lbs in 3 months!! SHe looses it really quickly so she still needs her tube and she has to be watched after to eat, but she finally gained some weight! We are hoping that we are getting a long break from surgeries and hospitals!!
posted by Carey Taylor @ 7:05 PM
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