Friday, February 22, 2013

Closer to "Normal" Life

I find it amazing that our family went so long without getting colds. We are paying now, the family has spent all of February with on and off colds. Liam still has a lower immune system, but as usual, he handles it like nothing is different. Liam got a cold and seemed to have gotten over it. Unfortunately, the cold symptoms have returned. Liam is the only one in our family who doesn't change their pace when they get a cold. As usual there is no laying down and resting for this kid! It is a reminder that in Liam's life, he may not actually remember feeling good. A cold is nothing to him. 

It's scanxiety time again. For me, it starts a week before the MRI/lumbar puncture. Liam's 3 month MRI/lumbar puncture is on Wednesday. He gets anesthetic for it, but he does need to be healthy. This cold better not delay it!

In a few weeks, Liam has surgery scheduled to remove his central line. Liam is indifferent, not knowing the risks associated with having a catheter hanging from his body that goes straight to his heart. Troy and I are super aware and can't wait to have it removed. Not to mention the maintenance and cost of having to a "heparin lock" every other day. We inject heparin into his central line to keep it from clotting. We have to change the dressing/tape that covers it every week. We have to be super careful to keep it dry during Liam's bath, and there is no swimming with it. Having this removed will be a big step to a more normal life!

Having said all this, Liam is so used to it, he is a bit concerned when we talk about taking it out. In the picture, we have it taped up to him, normally the "noodles" just hang down to almost his waist. Just the curled part is covered with tape.


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