We went to see Dr. Legett on the 20th. This was our first out patient appointment with Dr. Legett. It was great for her to see Casey doing so much better. The appointment went really well. She has an order for Casey to get some stronger pain meds when she needs them. She also referred us to a new pediatrician. Casey’s current pediatrician is nice, but he is scared of Casey. We will only go to him for immunizations and nothing else. We need a pediatrician that we can call when Casey needs one and we can not get right in to her specialist. I trust Dr. Legett and have very high expectations for the new doctor. Changing is kind of a pain. However, I think it is time.
Tim and I had a date on the 24th. This was our first date in a LONG time. I think the last time we went on a date was back in July. We went to a movie and grabbed a bite to eat. It was really nice. We recently changed our respite hours from a provider to what is called CDS (Consumer Directed Services). This basically means that we can hire/fire/train our own nurses. We have to do some paper work, but we are able to hire some nurses that don’t want to work for another company. They can schedule more freely. We made this change as of 1/1/2010. It is great. Now we can hire some of Casey’s previous nurses. They can still keep their full time jobs and just come by when they have some free time to make a little extra money. The initial setup is a lot of work. Once it is all setup though it just requires me to track and report hours for payment and taxes.
On Monday last week we removed Casey’s GJ Tube. She started getting really upset over the weekend and it was just getting worse. We had been slowly trying to get her ready to feed in her stomach. On Monday we gave up on the GJ all together. She was so upset and nothing else seemed to be helping. We pulled it out and with in minutes her hear rate came down 40 points. She was so happy to have that thing out. As were we. In case she did not tolerate the G Tube feedings we scheduled an appointment to have the GJ redone on Thursday last week. We figured that would give us enough time to see if it was going to work or not. We are so happy to report that we canceled Thursday’s GJ placement. She is back to her pre-hospital feed rate. She seems so much happier now.
Once a year we get a month that is CRAZY busy. It looks like February is that month. I spent most of the week last week on the phone scheduling everything. In addition to Casey’s usual therapies she has a bunch a annual stuff coming up. She has a dentist appointment tomorrow. We meet the new pediatrician next week. The week after she has an eye appointment. The following week is her yearly MDCP review. If that is not enough, some of her quarterly and bi-annual appointments are this month too. She has GI, Pulmonary and ENT fit in where we could find time. Then early March she has Ortho as well. Today is the only day (other than weekends) that we do not have multiple tasks scheduled.
I am sure I will have plenty to post over the next few weeks. As always we hope everyone is doing well.