Tuesday, August 5, 2008

Home Again

Kaitlyn made it home today! We spent the last week getting feeds restarted, struggling with venting Kaitlyn's stomach and dealing with clots in both of Kaitlyn's legs! We didn't have any trouble restarting Kaitlyn's feeds, she has tolerated feeds and rates extremely well. I attribute this to her Vivonex(AA Diet). We have been having some trouble with air in her tummy. We have not had any experience with venting her stomach while feeding at the same time. Thanks to all the help we received from other families with SMA children, we now have some idea as to what we are doing. Right now I have to get up and manually vent Kaitlyn's stomach several times a night. We have her extension attached to a sixty cc syringe hanging above her, but at full feeds she seems to trap air in her tummy. I am hoping that this will get a little better over the next little while.

When Kaitlyn's proximal lumin in her central line started leaking and we couldn't get blood back through the line, I asked during rounds if we shouldn't be checking that leg for clots as we already know that she has a clot in her right leg. They did an ultrasound and sure enough another clot! Now both legs have clots. Because the clot in Kaitlyn's right leg was an old clot and collaterals had already formed, her doctors had already decided not to treat the clot. The clot and collaterals have left the right leg inaccessable for future lines! Since the clot in Kaitlyn's left leg was new her doctors have decided it would be best to treat it. We are trying to also preserve this site for future central lines.

Kaitlyn has been placed on Enoxaparin subcutaneous injections for a three month course, to be reassessed often. Yet another thing my poor girl has to endure, but it's for the best.

No comments: