After the surgery, Ian was doing exceptional.... for about two and a half weeks. In what seemed out of nowhere, Ian’s retching began again. This was disheartening to say the least. After pushing through the week of surgery, we were hoping for some more serious relief. I guess our expectations were set beyond reality. Ironically enough, the retching began the afternoon we were on our way home from the CHOP follow-up appointment.
At first, it seemed as though the episodes were associated with food and trying to eat. It didn’t take long before it was happening with his tube meals. Ian’s problems are mostly associated with the end of meals and shortly afterwards. They are the same to us as they were before surgery. Thankfully, since the fundoplication has been repaired, there is no vomiting. Unfortunately, the retching is dangerous because over time, another hernia could occur. The surgery was certainly still a needed procedure, and a success.
This has been going on for about a week and a half now. After a week, I called CHOP. We put Ian back on the Benadryl a few days before I called. The clinic recommended we back down to Pedialyte and “ramp up.” For those of you unfamiliar with tubie “ramp ups,” it is a way of “rebooting” or “resetting” the GI system. Ian had nothing but Pedialyte through his tube for 24 hours. Then, at night, his meal was “ramped up” to 3/4 Pedialyte and 1/4 Formula mixture that he usually gets every day. Ian tolerated the 1/4 strength very well.
Since we were doing a “reboot,” we decided to take Ian off the Benadryl. When I asked if we should or not, they never gave me a definitive answer, so we did. Unfortunately, when we “ramped up” to 1/2 strength, the retching began again. The overnight and first 2 meals were no trouble, but then came the problems. After another call to CHOP, we decided to start again with 1/4 and use Benadryl this time. They kept insisting he might have allergies or an infection over the phone. Clearly, I know my child does NOT have an infection. I am not taking him 3 hours away for them to tell me that.
Friday evening and all day Saturday Ian had 1/4 strength formula only. He did wonderful. Last night we “ramped up” to 1/2 strength again. He was doing very well overnight and with his 9am meal this morning. This afternoon, while eating an oatmeal cookie, he had another episode. Thankfully it was because we tried to make him it, and not something he brought upon himself. We have restarted his feeding therapy and are trying to bring on food despite behavioral responses. Clearly, this was a behavioral response that brought on physical effects.
We are hoping that once we back away from the therapy for a few days, things will fall back into place. If Ian continues to have trouble with his 3pm and 6pm meals, we will need to call CHOP on Monday. We took about 4 huge steps forward with the surgery, but it seems as though now we have taken 2 steps backward. At least the net gain overall is positive. Hopefully “rebooting” Ian’s system will help him. Apparently, sometimes these kids get into a habit of doing it and their systems cannot stop. When I inquired about this, they simply explained that they don’t know why an that research has not found an answer to that yet. They simply know that it works for lots of kids and make recommendations sometimes without knowing why.
Since CHOP is the most advanced place in the country for this type of treatment and medical issue, sometimes we have to take huge leaps of faith. It gets harder and harder to do that as time, fear, and sadness continue to bash our efforts. Something might get us clearly through the problems one day, or it might not. Ian might do it all by himself, or, they could remain for life. Ian has slightly better than a 50/50 chance of growing out of it all. Knowing Ian, I am sure he can beat the odds someday.
One week after Ian’s troubles started, we took a 2 day-cation to Sesame Place. We drove up to Pennsylvania one day and toured the park, then spent the night nearby, and returned the next day. Most of the rides were for 4 and 5 year olds, but Ian was able to enjoy a few.
We took a ride on the flying Elmos. Ian much enjoyed the “riding” Elmos instead. The high flying was not on the favorites list. When we traveled to the waterpark area, Ian was able to do more things. They had several large pools connected that he able to play in. Lots of sprinklers and toys kept it exciting for him. The water was very shallow in some areas and Ian was able to lie down and play.
|Playing in the Waterpark|
He enjoyed a fun show while we were there as well. They have a “taping” of Elmo’s World, all about dancing. We were lucky enough to have a seat in the second row. Elmo was very exuberant and excited. Ian was skeptical of this 7 foot Elmo. The looks on his face were priceless. He had some smiles and was intrigued by the idea. When Elmo came over at the end of the show and reached out to touch the kids hands, Ian most certainly did NOT extend his.
The characters were fun and excited, but not walking around like the do in Disney parks. I was hoping they would be wandering around and interacting with the kids. Ian was able to hang out with Big Bird and Elmo for a photo.
The park does have a cool parade twice a day. At 3pm, shortly after we arrived at the park and then again at 8:30pm. The night show is a light show. We were fortunate enough to be able to watch both parades. Ian did like the parades.
|Bert and Ernie in the daytime Sesame parade|
|Enjoying the night time lights Sesame parade|
Although the trip was far, we did have fun. I think it will be something Ian will enjoy a little more in the future.
******Hopefully, Ian will turn another corner soon and begin learning to enjoy food again. The retching is getting really old and there is definitely nothing that would be missed. Ian’s second birthday is next Sunday. We are hoping for a wonderful day of family and celebration....... and hopefully Ian eating a small bite of cake.