Sunday, December 14, 2008
Kaitlyn is doing about the same. She still has cold symptoms. Tim thinks that Kaitlyn's symptoms are environmental as the temperature has been up and down the last few days. She has an increase in secretions and lots of junk coming from the nose. The saline nebs in the morning are really helping to get out this thicker junk. So far she hasn't had a fever; borderline, but not a real fever.
Tomorrow we have another appointment in diagnostic imaging (ultrasound) to have Kaitlyn's legs scanned. Kaitlyn has blood clots in both legs from past central lines in the femoral veins. Her clots are both arterial and veinous. She has been on Enoxaparin injections twice a day since early August. We would really like to be able to stop these injections as they are painful. We had scans done a month ago and the clots were still there and had even gotten worse! We upped her dose of Enoxaparin last month and tomorrow we will see if that has made any noticeable difference.
We also have an appointment with Kaitlyn's haematologist tomorrow. We have never had an outpatient appointment before and Tim has never met him. It will be interesting to see what he has to say. I would like to have an educated discussion with him tomorrow, but unfortunately Kaitlyn is the only SMA sufferer I know of to have clots. There also isn't a lot of online info. on clots in pediatrics, and what I have found I have read. Not much help there!
In my last post I mentioned RSV and how horrible this disease is for SMA children. Well a little girl with SMA Type 1 in Victoria, BC is currently in hospital with RSV! Our thoughts and well wishes are with this family. We are hoping she can avoid intubation and be back home with her family for the holidays!
Kaitlyn enjoying french fries! Just don't take it away!!! Major MELTDOWN!