What Mira's up to

Tomorrow is Tsvetomira's birthday. We plan to get as many of us as we can (hopefully all of us!) down to see her, though I don't know how many visitors at a time she can have in the PICU, so we may be going in shifts. ;)

One big difference between this hospital stay and her previous ones is the much greater range of positioning options they have for her, thanks to the work she's been doing with her physical therapist (yay Lori!) and to the things we've been doing with her at home. Here she is propped with pillows on her back!!! That's still not something we're comfortable doing at home because of how much trouble she has with her mouth secretions, but for short periods of time, under the watchful eye of her nurse, she can! And being somewhere other than her side is really good for her lungs. 

Because of spending so many years of her life laying on one side she has a "good" lung (the one on the right that was up) and a "bad" lung (the one on the left that was down), and the pneunomia she's dealing with now is in her left/bad lung. Soooo, when she's laying on her prefered side (her left side - the side she spent most of her life on) it's really tough on that bad/sick lung. However, when she's on her other side, then her good lung isn't able to do as much work, and all she's got is the bad lung, so even though it's better for the bad lung to be up, it's really tough on her!

So, she spends some time sitting in Daddy's lap, some time on either side, and some time propped on her back like you see above, and even some time propped in a prone position - also something that she's just recently able to tolerate at all thanks to Lori.

The last day and a half they have not been giving her sedatives, which means she's a little more agitated in those positions than she was earlier in the week, but overall its a good thing, because it means they think she can handle being a little more worked up because she is still moving in the right direction.

As you can see in the photo, she's still getting breathing assistance. Before we even talk about going home, she's got to be off that machine AND weaned off oxygen, so we're certainly still looking at a stay into next week. However, the last two nights have been good enough that Matt's decided to stay home for the night tonight (being in the PICU, she has a dedicated nurse watching her, and they can call if there are any concerns), because tomorrow morning, we've got Hope Kids tickets for the whole family to see Wonder! After that we'll stop through home to pick up the two little girls and Mira's birthday balloon and make the trip downtown to see our little birthday girl.