Last week was a busy one. Two of Casey’s four day nurses are changing their schedules for the summer. Her Monday nurse’s last day with us was this week. She is going to cut her hours back over the summer to spend some time with her kids. Casey’s Tuesday and Wednesday nurse also finished this week. She is going to be in school full time over the summer. It worked out really well though. Casey’s Friday nurse has been working as a NICU nurse in Temple. She just finished up there and has decided to enjoy her weekends and evening over the summer. She is going to take most of our open shifts. Then at the end of the summer she is planning on taking a local NICU job. I hope that it works out so that Casey’s previous nurses are ready to come back at the same time.
On Wednesday Casey had an appointment with pulmonary. It went well. It was just a check up. There are no changes to Casey’s pulmonary plan for now.
On Thursday Casey had her MRI. I was a nervous wreck. The last one went so bad so fast. I called and went up to the facility before hand to make sure they were ready for all of Casey’s needs. I was really happy with how it went. They let me lay on the table with Casey. When she would start to get junky they would stop the machine and get her out right away for suctioning. Casey did great. There was one sound she did not like much. She did not get upset really at all. I was very proud of her. What a big girl 🙂 They had to do contrast, which means she had to have an IV. That went well too. They brought in all the tools and were able to get it on the first poke.
Casey’s vision teacher made some Power Point books for her. We have a little attachment that allows up to plug her switch into the computer. She loved it. She was able to change the slides all by herself.
Casey’s twitching did not resolve at all with the increase in her seizure medication. Her doctor called in a new drug to try on Friday. We will give this new drug a couple of weeks and see how she does. I am guessing once the twitching gets under control we will need to set up another EEG. Our goals for the summer are to work on feeding issues (total volume, rate, leaks, etc) and to get the seizures under control. Of course, we will have to get as many trips to the pool in this summer too.
I will post more soon with updates on the seizures. We hope everyone is doing well.