Eat Happy!

Eat Happy!


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Monday, October 1, 2012

New Schedules, Tonsillectomy, and Obstructive Apnea

Nine days ago we tweaked Ian’s feeding routine to try and minimize the retching. Before, Ian had four G tube meals at 9A, 12P, 3P, and 6P during the daytime hours. While he is still keeping the same number of meals, we have changed the timing and intervals for certain days.

We changed Ian’s 9A and 3P meals from one hour to 90 minutes. Tom and I noticed that Ian’s meals after waking were the most problematic. Although, how long after waking wasn’t as much of an issue as it was the volume after waking. Since it seemed to be a combination of a few things, we decided to try something new. Switching the lengths did seem to help, so far. Another change that we made was watching his activities around the meals. We made sure that Ian had ample time between meals.

We had to shift meals around some of his scheduled activities to do so. While arranging the changes, we noticed Ian is a very busy little boy. Mondays stayed fairly simple, but Tuesdays involved occupational therapy, Wednesdays and Fridays included preschool, Thursdays incorporated physical therapy and feeding therapy, Sundays brought challenges with Gymboree and swimming lessons. We finally found a routine that seems to be helping. This will be the first Sunday that involves swimming lessons and Gymboree class. Hopefully we can keep the good streak running.

Another thing that seems to hold great importance is when Ian lies down and/or is jostled after eating. For 10 minutes or such after finishing a meal (or the last 10 minutes or so of a meal) Ian needs to be upright and doing whatever he wants to do, within reason. Lying him down for a diaper change, or even to remove his belt and feeding extension seems to slosh around the food, or disrupts the emptying, or changes some perception of gastric fullness. While we don’t know exactly what the deciding factor is, removing a few seems to do the trick. This can be tricky with car seat time, nap time, and diaper changes. However, as most moms of these kinds of children will tell you, it ends up being very simple. I’m not sure why, but it becomes second nature and “normal” to do these types of things. It becomes your new normal.

I will mention that it is very hard to express the importance of “your new normal” to others. Throughout the months of rearranging and routine changes, we have hit resistance. Tom and I feel that the importance of advocating for your child’s needs and routines is a must. Children are not able to make the same adjustments as most of us are. While some children are able to be more flexible and adapt better to routine changes, these types of kids do not. Ian thrives on a routine and while the timing may be changing from day to day, he knows when something is coming and has a way of cycling through his needs in a day in the same order.

As time moves forward, we await each day with anticipation of the day’s events.

Today’s visit to the ENT begins a new journey. In the midst of Ian’s seasonal allergies, we decided to mention a few extra things at the appointment today. The appointment was a consultation for tonsillectomy. The surgeon at CHOP mentioned the time had come for their escape since they are impeding air passage and breathing. 

The otolaryngologist said Ian’s tonsils are actually larger than last time he saw them in April (after the ear tubes were placed). Since they were “too big” then, they are certainly causing troubles now. His other concern is Ian’s adenoids. We have an appointment scheduled in the next few weeks to have a peak at them. He will use a fiberoptic scope through the nose to view the adenoids. They are “tonsils” that are in the back of the nasal cavity. He is anticipating their enlargement as well.

In the meantime, we are to schedule a sleep study. The reason for the study is to examine the degree of severity of the obstruction. Since the surgical treatment and post surgical treatment depend on the exact severity of Ian’s case, a diagnostic evaluation is needed. The test will be looking for obstructive apnea. he is not expecting Ian’s test to be normal. He is fairly certain that Ian will show some abnormal results and give good information on what needs to be done.

We will call to schedule Ian’s sleep study in the next few days. I am hoping we will not need to wait weeks for the study, but knowing the ay these things work, it might be some time before we can get him in. Three weeks after the study, the ENT will receive a report. At the follow-up appointment to discuss the report, we will be able to move forward with the surgery. Tom and I are hoping that the surgery can be before the Christmas holidays. I think before Thanksgiving is a crap-shoot at this point.

As we move forward with another adventure for our little Beaner, more hope floats our way. It is a hopeful, yet very, very sad feeling when you are anxious to take your child to the doctor in hopes of making progress by talking about surgeries, studies, and procedures. However, I must mention that it is a way better feeling than the feeling of knowing you are going to a visit that you know will do nothing whatsoever........ which we have done numerous times.

We all have ailments over the years and feel hope when finding answers and moving forward with treatment. In our experience, it is a very different scenarios when it comes to your child, especially your small child. The feeling of gladly taking your child to multiple doctor’s visits and specialists every month is something no parent, or family should ever have to feel. But for those of us who do, the glimpse of hope keeps you trudging on. While some of us don’t get excited until something actually proves it is hopeful and working, the feelings generated at these appointments keep you going from one to the other.

There is a fine line between feeling hopeless and “knowing everything will be ok in the end.” Floating somewhere in the middle, these appointments intersperse optimism into the life of living from POINT A to POINT B.

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