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.

Spiders and Dead Pumps and Shingles, oh and Vacation!

This past weekend we were all able to get away with family to the beach. As the four day weekend approached, Tom and I got excited about having four days away, to...... anywhere! Unfortunately, it would not come without jumping a few large, disgusting, and frustrating hurdles first!

As the vacation-eve came to an end, I made one last trip to the garage freezer, in hopes of snagging a Klondike Bar before bed. When I opened the garage door, a large furry, eight-legged creature greeted me. I promptly freaked out and shut the door. As I called Tom to execute our furry friend I made sure to let him know the caliber of his opponent. The body was larger than a grape and the legs spanned about four inches or more. Now, living in Northern Virginia, this is NOT an everyday “animal” of the habitat.

As Tom entered the garage he said “I don’t see anything.” This disturbed me as much as finding him chillin’ out in my garage. Hell no, this thing was not going to live in MY garage. As a good hubby does, he scanned the garage and found him hangin’ out under the car. I grabbed the largest fly swatter I had that happens to be a flip-flop on a long stick....... yea, that’s right, you heard me. After a few estimated approaches, Tom put the spider out of “our misery.” After the swat, I heard lots of cursing and smacking/stopping. I knew what was happening, although I tried not to think of it. An old friend recently has executed two in her home which immediately spurted hundreds of........ can you guess........... yea, baby spiders!!!

Asking the dreaded question “What’s wrong,” Tom replies with “It was pregnant.” I could feel the vomit rising in my throat. I ran to get the Raid as he continued practicing Riverdance on the baby spiders. As it turns out “Flying Insect Raid” works perfectly fine on creepy-crawlies as well. As the Raid wafted into the house, I had to shut the door. When the executions ceased, we needed to back the car out, hose down the garage, and allow to fumes to air out for a bit. Tom and I both enjoyed Klondike Bars before bed to “celebrate” our efforts. The phrase “What would you do for a Klondike bar” might never sound the same again.

As time would lead on, we had another speed-bump to disrupt our routine laden lives. Tom had some trouble getting Ian’s food bag to run properly in the feeding pump the same night as the creepy-crawlies. After replacing the bag, the pump seemed to be running just fine. Overnight, audibly, the pump was perfect. The volume was increasing as the food delivered and no alarms or errors ever occurred. At 5:30A when Tom unhooked Ian from his overnight meal, he took the bag downstairs as he always does. When he placed it in the fridge, he noticed that the bag was FULL. Ian had nothing to eat overnight, nothing. Now, when this comes to a two year old with ketotic hypoglycemia, (an abbreviated fasting time from g tube feeding routines) this is a problem. When we took his blood glucose, he was safe! The reading was 83 and we said a little prayer of thanks. Typically, Ian’s number would be in the low 40s at this point....... leading to medical intervention and a possible ambulance.

We had noticed that the pump was not running as it should be even after cleaning and resetting. At 6A I called the emergency phone line for our home infusion pharmacy.... I was quickly put on hold....... HOLD......... on an emergency line. Once speaking to someone, a nurse called me back telling me she would “Pass along the message to the Pharmacist.” This does me no good at this point. Ian needs food now and I have very little leeway to give him bolus feedings through a syringe or gravity meals. Thankfully, a Pharmacist called me right back and had a driver bring a pump within the hour.

Later on in the morning, they called again and brought a back-up pump for us. This has happened twice in the last year. The insurance and home care company had decided we were permitted to have a back-up pump for future emergencies. This is incredibly rare! It wasn’t four hours after the resolve of this incident for another to come along.

As I was packing and getting ready for vacation, my husband informs me that his mother has Shingles! This is a huge problem since Ian is only half way through his Varicella vaccines. He has neither immunity from vaccination, nor from exposure to the virus. Contact and respiratory particles become a major concern, especially with Ian’s compromised immune system. It looked as though we were going to be missing a very important part of our family vacation! Our trip to the Baltimore Aquarium that day was cancelled and we made plans to spend the night with friends, as to avoid contact with Ian and the virus.

Later in the evening, good news arrived. My mother in law had visited the urgent care from anti-viral medication complications. Upon her visit, she was told by two doctors, independently from the other, that this was NOT Shingles. The Physician’s Assistant had misdiagnosed that morning at the doctor’s office.

The next morning, a much needed vacation began as we travel to the eastern shore of Maryland. Driving as the sun came up over the flat fields of corn and soybeans was so beautiful. Tom and I went to college there and it brought back many memories of the drives, and the days which didn’t seem that long ago.

Once we arrived at the beach, we were able to do lots of fun things together like miniature golf, walking on the boardwalk playing in the sand, picking crabs, and enjoying some relaxation time. Ian had lots of fun in the sand...... which was wonderfully surprising with his sensory impairments. He was very excited to play with Grandpa and chase him around in the sand...... mommy, not so much. There is always fun and games with Grandpa. 



Ian especially enjoyed playing with the miniature golf props. He liked the dinosaurs the best!