Monday

Today Child Life came to meet with Laila and helped us motivate her and get her up and around. She went walking and she did great! She actually showed a bit of personality. It seemed like since getting out of ICU she clammed up so bad. Then last night she had a traumatic experience because they ended up having to cath her to empty her bladder. SHE.WAS.TICKED! She was really mad at me! I felt horrible for her and it really seemed to put her in a funk, and who can blame her?!? I think she had high expectations of feeling better after surgery and she is probably thinking, what?! Why do I feel so terrible?

The chest tubes are still in. She is still draining. The pacing wires were possibly going to come out today, however last night she had a bad episode where her heart rate went up to 140. It stayed that way for about 2 hours. Jarrod was here and he said a group of Drs came rushing in and out and there was even mention they might put her back in ICU. Basically if they have to pace her heart she needs to be in ICU. Hopefully it won't come to that. I asked the surgeon about it tonight. He told me that kids with Heterotaxy sometimes end up needing a pacemaker. Its something that could be a possibility one day if this does not resolve itself. However he said that its still early to make that call. Her heart is still adjusting to the new circulation and getting over the surgery. Its just crazy because the previous night her heartrate was too low?!?!? There is such a fluctuation going on. Great news is that her sats are sittin around 90-94% on total room air. There is a possibility that when her fluid clears up they could still increase. So that is such a massive change for the better! I think just walking down the hall before surgery would have taken an effort on her part. She probably would have needed a break even then. I cannot imagine when she is well what it will be like. We won't be able to keep up with her and Krissy!

Overall I think we have a few more days here. Jarrod and Krissy had to go back home (about 2.5 hours away). Hopefully Krissy can stay away from any yucky, sick germs at school and she can come back up here this weekend. Praying she stays well!!!

Laila is sleeping so hard now. I think she is pooped from all the walking. It may be a late night :) Lets just hope for an uneventful night!!!