Since Casey is home we decided to have a quiet family celebration for her birthday (and for being home) this weekend. Tim’s mom and brother Larry came in from Indiana and my mom and John came in from Houston and my sister Megan and grandpa came over. Casey was pretty out of it for the …
Home Sweet Home
WE ARE HOME!!! Although we are home, Casey still has a lot of work to do. The rest of the work can be done at home. At home she is more comfortable, able to go at her own pace, and we don’t have to wait on or rely on others to get her what ever …
We’ve Moved
Yesterday afternoon Casey moved out of the PICU and into the IMC. The IMC is where we usually get admitted so we are much more comfortable here. The staff knows Casey (& us). The room is a little bigger & it has a shower (we stink). There is still low patient:nurse ratio as well so …
Hard Weekend
This weekend was really hard on Casey (and us). Friday and Saturday we had to push her really hard with her different treatments. She worked so hard, but it took its toll on her. Saturday night Tim and I could not take it anymore. We talked with the doctors on Sunday and told them that …
Saturday
Casey stayed on the bilevel bipap for nearly 24 hours straight. She came off a few times for minutes, but mostly she stayed on. This mornings X-ray showed a little (not much) improvement. The doctors wanted to keep her on bilevel all day again. Casey was not having it though. She was fighting the machine …
Setback
Casey did really great last night, but her X-ray this morning was bad. Not only is her left lung worse, but her right side is also showing more problems now. She also had breathing / heart rate issues this morning and then spiked a fever. They have started her on antibiotics for a possible infection …
No IPV – Yes BiPAP
Casey had a full day. We things started bright and early. Around 3:AM when Casey finished up a round of bipap and then we got a new weight on her. She was really angry about being woke up for a weight, but I am glad we got one. She hit 31 pounds back in 2009, …
Slow and Steady
Casey has been on a pretty intense respiratory treatment schedule over the past few days. She is doing 3 hours on bipap, then a round of 3-5 different breathing treatments (nebs) and IPV (with lots of suctioning as we go). The nebs and IPV run for 30-45 minutes. When she finishes these we flip her …
Lungs Continued
Casey had a rough night. I was worried her morning X-ray was going to be horrible. It wasn’t worse, but it was not really better either. The doctors decided we need to be more aggressive. Casey is on bipap for the night. We are doing 3 hours on 3 off to try and minimize any …