Cole's surgery for his port removal is next Monday so we wanted to get a look at his insides and make sure everything looked ok before we went forward with this. Plus, it was time (3 month mark). So yesterday I took him in for a chest x-ray to look at his lungs and an ultrasound to look at his liver. We got there fairly early for the x-ray and got right in in 5 minutes which was amazing. He fought it and fought it but managed to get some good pictures and get out of there in 15 minutes. The reason he hates this is b/c we have to hold his arms straight up for about 30 seconds several times and he cannot move. After we finished this painful process we had a little time to spare so we walked up and down Piedmont Ave. then headed back into the hospital for his ultrasound. Luckily in that time Cole got his nap so he was in a good mood when we arrived. This was a little more time consuming b/c the technician would take pictures and then have to compare them with previous ultrasounds to make sure she was looking in the right places, then talk to the doctor there to double check they were seeing what they were supposed to see and so on and so forth. We were out of there in an hour and Cole hung in there like a champ!
We left feeling good that was all done and expecting to hear from Dr. Goodman in a couple days.
To my surprise, Dr. Goodman called me 2 hours later to tell me that the 'spots' on his organs looked the same as the last exams. This was good news and to be expected since after the biopsy we concluded the 'spots' were scar tissue. So we were happy with the news and he continues to thrive and be such a happy, mild-tempered baby!
We are looking forward to another Histiocytosis meeting at Stanford on June 19th. There will be a lot of other Histio families we can get to know and knowledgeable doctors who can give us updated info on the disease. Joe and I went last year and were able to feel support and meet other families that deal with this awful disease as well. We are very thankful for the HAA for putting this on!
About Cole Kambeitz
- Holly Kambeitz
- Cole Jonathan Kambeitz was born October 5th, 2008. He was born with chicken pox-like lesions on his skin. After a CT scan, MRI, x-ray, ultrasound, and a biopsy, he was diagnosed with Langerhans Cell Hystiocytosis (LCH) at 3 days old. It affects his skin, liver and lungs. He completed treatment of 1 year of chemo and steroids and after a liver biopsy in late November '09 confirming no active disease, he is officially in remission. Today he is a very happy boy, excited to explore the world.
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