Becoming More Active

Day 6 in the step down unit on C5, Claire has started to become a little more active. We have enjoyed seeing her play and smile and the like. She has been chuckling at all kinds of things and starting to get her personality back.

We do have one thing that we want to share and ask for your prayers. As Claire has become more active, we have noticed that she has limited movement of her left arm. I kind of had flash backs to the first time we were in the hospital when it seemed as soon as we would see some progress, there was another wave of information that crashed down on our nerves.

Yesterday we found that her pleural infusion appeared to decrease in her lungs. We were happy to see that this main response to the Fontan was starting to correct itself as her body becomes used to having all of her deoxygenated blood go to her lungs first, then to her heart. We worked really hard to challenge her lungs by making Sssss sounds and blowing bubbles all the while having good laughs. As I am sure most of you know, nurses regularly flush IVs and we found that the IV in her left arm had run its course and so it was removed. Up until that point, she was mainly using her right arm and we thought it was due to the fact that she still had the splinted. Amanda had made a comment a few days ago about her limited movement in her left arm but we wrote it off due to the IV and splint. With time, we became more concerned and eventually talked with the Doctors. Nurse Amanda did her Nero Assessment and we were waiting in a state of uncertainty. As soon as you think that you turn the corner, something else seems to pop up. The evening doctor said it could be due to the multiple days with the IV / Splint and mentioned we would look at it in the morning.

This morning, Amanda talked with the doctors during their rounds and they agreed that it is probably due to the multiple days of IV / splint but thought it would be best to due a CT Scan just to make sure. We do not have the results yet but we are praying that all the Nervous system is good.

We appreciate your prayers and love you all.