Saturday, November 8, 2008

Blood Clots

Not much new in the Hatchard household. Everybody's fine, and Kaitlyn has been doing really well. We haven't had to suction her very much at all the past few days. She has even tolerated sitting up for short periods. We had an appointment early Friday morning with diagnostic imaging at our local children's hospital. It was an 8:00am appointment which means that we had to get up by 6:00am in order to complete Kaitlyn's morning treatments in time. Kaitlyn was having an ultrasound on her legs for bloodclots discovered in the groin of both legs during the summer. The bloodclots are a result of past central lines placed in the groin.

Typically this type of clotting in a baby, and in the groin, would not have been treated. But it was decided in Kaitlyn's case that we would try treating the clots as we are trying to preserve the groin for future central lines. Access for the purpose of central lines is extremely important for Kaitlyn as I'm sure you all know how difficult any access is with our SMA beauties. (They sure do like to be difficult!)

The clot in Kaitlyn's right leg was old when we found it back in July. I then asked during rounds if we shouldn't be doing an ultrasound on the left leg now to check for clotting in that leg. Sure enough, another clot! They said good call "Mom".

We began treating Kaitlyn with Enoxaparin subcutaneous injections. It is a heparin type blood thinner. We had the ultrasound on Friday to see if the clots had resolved or were resolving. Some of the clotting in the arteries has cleared, but there are still clots in the veins of both legs. The clots do look better now than they did back in August, but we were really hoping to stop the injections. Kaitlyn's legs are all bruised up.....poor thing! Her right leg has been rendered inaccessible to future central lines...too many collaterals have formed. The left leg should still be accessible, but clotting is always going to be a concern from now on.

Apparently this type of clotting isn't that common with SMA, so I'm thinking that we may have to do some further testing to figure out what makes Kaitlyn different. She may end up on some sort of more permanent anti-clotting medication. Enoxaparin injections are very safe and bloodwork only needs to be done once a month, or more. But the drug is not cheap, and there is of course no coverage for the needles. The other issue is that giving Kaitlyn needles twice a day isn't pleasant.

Kaitlyn's newest thing is books. She has always liked books, but has sometimes been a little indifferent, or asked for Dora instead. Well lately she has taken a huge shine to reading! She can't get enough! We read her a half dozen books...sometimes more, stop reading and she cries....and cries. She really likes the lift the flap books, and we have to help her lift the flap(again and again). She will sit up in our lap the entire time, which is good for her really. But it does get tiring. We need to get her on the computer so she can "read" books herself!

Her other new favorite thing is anything that Owen is playing with! If he's got it she wants it! And she cries when he walks away and won't stay right in front of her and play! We really need to get this girl mobile so that she can follow Owen and watch what he's doing. He is apparently where all the action is!
Books...books...books!



The very popular Spidey Chair...she just had to have her turn. Just try to tell her that it won't support her!!


Alexander and I fight for dish towels, his favorite thing to suck his thumb with!!! Of all things! I think that I go through six or more dish towels every day. He calls them sooky!

1 comment:

Nina said...

Kim I am so sorry Kaitlyn has to go through this.
Sorry I have not been keeping up. I was sick and now my girl is sick.
Hugs!!