Here is a recap of our latest trip to Boston:
1) GI - The doctor is pleased at how well we've been able to advance his feeds. Before the feeding trial in October Matthew's rate was at 58cc/hour and total volume was 1220cc/day. He's now at 70cc/hour and total volume of 1470cc/day. Matthew still needs to get an additional 400cc per day to get what the doctors think he needs for his fluid and caloric intake. We've hit another bump in the road and the GI is calling Matthew's Nephrologist to come up with a plan to advance the feeds.
2) Complex Care - We discussed a number of things at this appointment, the biggest one was how to get Matthew back on his Mito Cocktail. His insurance has stopped paying for it back in July and we can't afford the close to $1000.00 every month for it. She is going to see what other alternatives we might have and resources that might be available.
We also discussed the problems Steven had this fall and she agrees that it is a good idea for Steven to come to Children's for an evaluation given Matthew's history.
3) Surgery - Pretty straightforward, Matthew's incision has healed nicely. Matthew's J tube site has been irritated and infected. We had a culture done and showed her the results. She said the site looked ok but to keep an eye on it since there is some granulation tissue building up, and if it got worse to let her know.
4) Cardiology - Another easy appointment. Matthew's Echo and EKG looked good, no changes from prior studies. We did discuss Matthew's tendencies for fast heart rates after procedures. She said its just his autonomic response to stress. The doctor said it was ok for him and to not let someone treat him for it as it could cause more problems once he got back to his baseline. She said to page her if this ever became an issue with someone wanting to treat it.
5) Orthopedics - We discussed Matthew's issues with the braces he had been given during the summer. Matthew had problems with bursitis developing on both heels and the AFO's they wanted him in had a special rubber boot inside it. We couldn't find shoes big enough and the boot made his feet get too hot. After doing a not so thorough exam, she agreed that the AFO's with the boots were not good for him. She wants him to use his prior kind the spring leaf AFO's without the boot. She also said Matthew does not need to wear the AFO's all the time. We have already been doing this. He doesn't wear them when at home inside the house or if he isn't going to be very active.
Highlights from this trip:
1) We got to visit our good friend Sarah on her birthday. Unfortunately she was in the hospital on her Birthday (3 years in a row) but worked out for us as we had an appointment that morning in the same hospital. We were able to spend a few hours with her.
2) We always seem to be in the right place at the right time. In between appts on Thursday we were walking by the Patient Entertainment Center at Children's when we saw they were doing some crafts. The people were from the Museum of Fine Arts. They were doing wire crafts and Matthew really impressed them with his knowledge of Greek Mythology. They were handing out passes to the Museum and we went after our appts. The museum is just a 15 minute walk from the hospital. We had a good time there and the Mummy tombs freaked Matthew out. Unfortunately we couldn't see the paintings of the Greek Mythology section as it was closed for a private party.
3) We learned that in order for Matthew to actually get on the growth chart (3rd percentile) by his 10th birthday in November he would have to gain 17 pounds and grow 7 inches in 10 months. We chuckled at that.
4) Matthew's Cardiologist at Children's had one of the best descriptions of Matthew. "At an institution of this size where we see every sort of thing, Matthew certainly stands out as an unique individual with very unique challenges". While we've always wanted our children to be unique and stand out we never really wanted any of them to be this unique.
