Kenzie had a busy morning at Boston Childrens meeting up with doctors... and we have somewhat of a plan and idea of how the summer is going to go.
First up was an appointment at the gastrointestinal department followed by nutrition. The verdict is in....Kenzie just isn't gaining weight as she should, and a feeding tube is needed at this point. This will come in two stages. First they will place an NG tube, which is a tube going from the nose to the stomach. This will be in place for a month or more to see how she tolerates it, and how it goes. This will be done in Boston as an inpatient procedure, and Kenzie will be hospitalized for up to a week. Most likely this will happen within the next month, but we will let you all know when we get the date. The hospitalization is necessary so they can monitor Kenzie and her levels...to ensure it is working properly and that she tolerates it. If this goes well and she does well with it, a month or so later she will be admitted for surgery for placement of an actual G tube , which is placed in the abdomen. This too would require about a week or so hospitalization for Kenzie. Needless to say this is all happening very fast and we have some arrangements to make and things to figure out to make the back and forth to Boston work as a family. Somewhat of a logistical nightmare on all levels.
Kenzies other appointment of the day was with her orthopedic doctor. As we all know, Kenzies hamstrings are super tight, and her knee flexion is bad. Kenzie is in need of botox and phenol injections again, earlier than last time. So instead of waiting until the fall, Kenzie will be scheduled to receive the injections before September. We don't have a date for this yet either, but it could possibly be done at the same time her feeding tube is placed.
So a lot of info to be had today, but one step at a time. As we get more information and actual dates for procedures, we will certainly keep everyone updated. Keep the positive vibes and prayers coming!!!
