Nine weeks and a taste of the outdoors

The doctors have jointly come together (pulmonary, oncology, & nephrology) to make some decisions about Maggie's situation. First off, her acid reflux test came back normal, meaning she doesn't have acid reflux (the antacids she is on are working). The kidney doctors ordered a test of Maggie's kidney function to determine if she was having problems and thus the reason for retaining fluids (as well as checking to see how her kidney function was). This test came back normal; well actually better than normal if that is possible.

Pulmonary came to rounds yesterday morning to help make some decisions in regards to Maggie's upcoming tests (an oxygen study & sleep study). They decided at this point in time, they are not going to do either study because they don't feel it would give any more information to what they are already treating. They also want Maggie to be completely weaned off of her withdrawal medicines. She will be finished with these meds (methadone & valium) on May 4. They have decided that the de-sats that Maggie is having at night are most likely related to the sleep cycle that she is in-- REM sleep. So, the sleep study might eventually happen, but probably as an outpatient visit.

Pulmonary also suggested moving Maggie to oral lasix to help with the potassium problem as well as help with our future plans of discharge. They need to be able to have a plan in place that helps her to get rid of fluid yet keep her electrolytes at an appropriate level. This oral lasix began yesterday so we will see how she does in the next couple of days.

Maggie's oxygen requirement remains where it has been the last week plus. She goes from 3/4 to 1 liter. She grows tired in the evening and we can tell because she does more de-sating after 5:00. We try to keep her as relaxed as possible since the more energy she exerts, the more work it takes for her lungs to function properly.

Today marks the 9 week mark of being in the hospital. Today, Maggie went outside for the first time in that 9 week period (we aren't counting her transport down to Cincinnati). Her occupational therapist took her outside on their playground on the roof. She had a wonderful time playing in the sun on the blanket and going down the slide. A friend that works at the hospital was there and took the pictures that are posted. Maggie is enjoying life to the fullest. I'd just like to be able to have her enjoy it outside the hospital too.

We put the clothes that we packed for Maggie back in February on her. We have found that her pants are too tight in her diaper area and too short, her sweatshirt is very tight around her, and her shoes are too small (I think due to some wideness in the foot). We might just be buying her a whole new wardrobe when we leave here, as she has gained over 5 pounds since being admitted into the hospital (much of that is most likely fluids).

Maggie picked a new toy out and played with it on the blanket outside.

She is crawling! Maggie is getting her strength back and doing some of the things that she was doing before she got sick.

She went down the slide 3 times. I think one of her highlights of being outside.

What a happy little girl! She is such a joy.