Author: MartyBarnes

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 …

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 …

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, …

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 …

We hit the 1 week mark today. Casey has been having some pain issues again over the past 24 hours. We have been trying to get her as comfortable as possible- without much luck so far. The doctors have a few ideas to try and isolate the source of the pain. It could be so …

We got Casey’s pain meds managed much better yesterday, and she was sleeping great, but in the middle of the night she was non-stop with suctioning and crying. Her heart rate was up and quick shallow breaths. We could not get her to cough anything up, and the tube that is in her nose makes …

Casey had a rough night again last night and it bled into the morning & afternoon. They increased her morphine again and added a sedative to help to the edge off as needed. Those seem to be helping. Since we have to wait on the new tube to heal before we can use it Casey …

This morning started out a bit rough after a really long night. I laid down to get some sleep while Tim sat with Casey. I was so happy to wake up to a much happier baby. I think she just wanted some daddy time. She was still a little restless, but settled down and got …

We have been in the ICU since our last post. Casey is having a hard time getting comfortable. Her heart rate has been elevated and she has been a bit whiny (all signs that she’s having pain). She’s getting continuous Morphine now and frequent additional doses. Her heart rate is very slowly coming down. When …

Today is the day.  We are heading to the hospital.  We went in last week to do the pre-admit paperwork to speed things up this morning.  Tim and I did not sleep much at all last night.  Luckily, Casey did sleep pretty well. Yesterday was a really bad day, one of her worst in a …