Getting better

Ry has had a pretty great week following a pretty crummy weekend. The cath last week really knocked her back a bit. She suffered through some pretty terrible pain on Friday and Saturday (mainly from a "real" chest tube) and by the time Sunday rolled around she was super glum. We knew she was finally feeling better with some increased pain meds, but she just wouldn't snap out of the blues. It broke our heart to see her so upset. But Monday was a new day. We have had a pretty great week and each day seems a little better. She has kept most of the fluid from reaccumulating in her chest, her appetite has increased just a smidge, and she wants to get out of bed more. These are all big strides.

Also, very importantly, she's been sleeping better. She still wakes a time or two during the night and will be uncomfortable for about an hour, but she eventually falls back into a heavy sleep. I'm so thankful that she's resting better. Thanks for all those prayers for good sleep. It's so important for a healing body.

The one thing that we still have some major concerns about are the cannula (I just realized that I think I've been spelling this wrong all along!) sites. Her tissue has eroded quite abit around each site and we're trying everything to promote tissue growth. On Tuesday, the discussion began about better securing the device so that we can cut down on the movement of the cannulas. With input from the transplant team, nurses, and would care, we came up with a list of problems and then how we might fix them. I immediately called mom who I knew was on her way, and asked her to make a stop at Hobby Lobby. I was determined to fabricate a device/holster like type thing to alleviate some of the movement. Nurses brought me 100' of tube gauze elastic net (in two different sizes), 6' of some other kind of gauze wrap, gel pads, and scapels. Mom brought foam blocks, more fabric glue and some material. I spent a few hours on it late that night and came up with a pretty good prototype for my first try. I plan to use a different material, but otherwise think it's alright. I will have to post pictures of it later. I hope it helps promote healing for her wound sites.

Today, much like yesterday and the day before, we plan to leave the room for a bit. it's still disheartening that Ry doesn't enjoy getting out of the room, but we'll just keep trying.

Here are some pictures from this past weekend and on Monday when she was feeling well enough to ask for her colors. We got to work decorating Daddy's "coat". (We had to run some cultures on Ry and therefore had to gown up till the results came back negative. We tell Ry we wear these coats because we get too cold.)

This pictures was taken OUTSIDE! Yep, you heard me right. For the first time in 4 weeks, we walked outside the hospital doors for about 10 minutes. It was sooo hot, but it was still great to let Ry have a little fresh air. We blew a few bubbles and then headed back in.

Ry's about to get up from her nap and it will be time for PT/OT. I have to run and again apologize to our faithful followers that it took me so long to post. I will try to find a little more time to sit down and let ya'll know how we're doing. Keep praying for Ry's strength, appetite, cannula healing and of course, that special Angel heart.