Replacing Nurse Betty

Whoops! Susanne knew that Paxton was overtired from the travels yesterday, but she didn't realize that she was so overtired as well. She accidentally fell asleep and missed Paxton's 9:00pm feeding. It wasn't until around 1:00am that she came to. She knew something was wrong when she looked at the clock. It took her a minute to realize what had happened. She immediately got up, gave him his medications, and started his continuous feeding. Before heading back to bed, she also had to pump. It was going to be a long day.

Paxton had a new nurse coming by the house for Susanne to train and evaluate. She had to print out Paxton's daily schedule and the specific instructions that come along with taking care of him. He was supposed to arrive a little before 9:00am. Susanne started getting worried when he didn't show up by 9:30am. She didn't have his personal phone number to contact him so she decided to go ahead and give Paxton his morning medications and start his first bolus feeding of the day.

The nurse didn't show up until an hour after his scheduled time. He said he got lost in the neighborhood. The first thing they did when he arrived was to swap phone numbers.

Susanne liked the new nurse right away. He had a very soft spoken manner about him and seemed laid back. He took notes and asked a lot of questions when she was going through Paxton's daily routine. He was very comfortable with the Infinity pump, enteral bags, medications, and G-tube care. It helped that one of his other patients that he worked with had a G-tube as well. This would make training that much easier. Susanne would be able to trust him more than someone that had no previous experience with the MIC-KEY button.

Paxton adjusted to the new face quickly. He was so laid back and social that he loved seeing new people. The nurse did a great job of asking questions when unsure about something and he never attempted to do something for Paxton if he was not comfortable with it. Paxton slept most of the time that the nurse was at the house. He probably wouldn't get a good sense of how great Paxton was until he got to spend more quality time with him.

After the nurse left, the occupational therapist came by for an oral therapy session. As always, they started with some facial massage. Once his cheeks and mouth were all warmed up, Susanne started by offering him the oral swab. He was very receptive to it and loved to suckle on it to get little drips of water. He had grown to love the feel of it againgst his gums. It probably provided some relief from teething. After doing that for a while, Susanne offered Paxton spoonfuls of peaches and peas. He did surprisingly well with that today. He still took a long time to gain the confidence to swallow the food that was offered, but he seemed to go through the motions a lot faster. He did not spit up or gag once during the entire session. He also recovered nicely when he was struggling to clear his mouth. He was pretty much all laughs and giggles. It worked well when Susanne would offer him the oral swab between the spoonfuls of the other food. It probably helped to wash it all down.

Susanne had some new goals after todays session. She was supposed to start trying to feed Paxton in his high chair. This would encourage him to be in a more upright position instead of a more reclined position that the bouncer forced him to be in. Also, she could start teaching him sign language that he could use to be able to communicate to her if he would like "more" or if he was "all done".

Paxton went right down after therapy. He had worked hard and deserved a nap. Once he woke up, Susanne ran a few errands. She wanted to go pick up his 1-year-old photos that she had done. She was bummed to find out that the place had closed at 7:00pm especially since she got there just a few minutes after. Paxton was still connected to his feeding when Susanne was wandering around in and out of other stores. She noticed how people couldn't help, but stare. Their natural curiousity kept them from being able to look away. Susanne didn't mind because she knew it looked odd to have a tube connecting form a bookbag on her back to Paxton's stomach. Since his G-tube was covered with clothes she was sure someone probably thought it was a urine bag or colostomy bag. The entire time they were out and about, Paxton was very talkative. It was neat to hear all the new sounds he was making with his mouth.

Paxton was beat when they finally got home. He was more than ready to go down for the night. Susanne also felt exhausted and she could tell she looked it too.