Wednesday we received a call from Children's Hospital that they could get us in the next day for the endoscopy to place a Pill Cam in Jonathan's upper small intestine. Although it was short notice, we were excited about being able to go through with the procedure that we hoped would give us some answers. Excited may not be the right word since we've put Jonathan through many things over the years. He's finally at the age where he knows what's coming and visibly reacts to it, making these visits less and less enjoyable.
Jonathan did great the day of the procedure even though he hadn't been given any food or water since three in the morning. Julia came with us on this visit. Everything went well until they took us back to the procedure rooms. Jonathan was his happy self until we turned the corner. When he saw the area he stopped dead in his tracks. From that point on he stayed near to us and was visibly nervous.
Since Jonathan is so young, putting him under anesthesia essentially amounts to pinning him down and holding the mask over his face until he inhales enough gas through his cries to fall asleep. We had done this same thing two months ago, so this time we decided that I would go with Jonathan by myself while Stacey and Julia left for the reception area. This time was a little better, but not a lot. We chose a berry scented chap stick for the inside of his mask and we took turns smelling it and putting it on our face. However, when it was his turn the second time even I could smell the gas when the anesthesiologist turned it on. After the gas came on we reverted back to the pinning method. This time he didn't cry as intensely, but it amounted to the same experience, I'm sure.
The procedure went well and we made it home safely. Every four to five seconds, as the pill naturally descended, the camera inside of it took a picture. It did this for 12 hours until about 2:30 in the morning. It relayed the pictures to the sensors on the body, which then saved the images to the disk in the backpack. The next day I had to drive it back up to the hospital for the doctor to review. The Pill Cam itself is disposable, but we're saving it for when Jonathan is older.
We had to wait about a week to hear back on the results, which I'll reveal in a separate post.
My almost 20 year old truck was having trouble starting over the past few weeks. So, last weekend, after doing a little trouble shooting, I stopped by the auto parts store and dropped $80 on a new starter motor. I had skimmed a few YouTube videos, but not enough to know exactly what I was doing.
About 90% of the time was spent figuring out how to and removing the old unit. Had I owned the right tools and knew what to do, I probably could have done this in an hour. It took about 4 hours, but it was a relatively easy job. I'm sure it would have cost a lot more had I taken it to the mechanic shop. For those who are wondering, my truck has started every time since the replacement.
Description of pictures, left to right: access to the area through the passenger side wheel well, a closer look inside the wheel well (locate the orange oil filter for reference later), the old starter motor and solenoid, a very close view of the area inside the wheel well with the starter removed (locate the gear, that's where the starter goes), the new starter, and the new starter bolted back in and working.
One of the best "finds" from this process was how well Simple Green cleaner works on dirty hands. My hands were black with dirt and grime and Simple Green took it right off in a matter of seconds.
We had a good laugh around the dinner table tonight. While we were eating Julia brought up that earlier in the day Jonathan had told her that he didn't like her anymore. This wasn't the first time he's said something like this, and it wasn't the first time Julia wondered if there was only a small piece of truth to the statement. After all, Jonathan usually follows that statement with a "but I still like or love everyone else in the family".
Knowing what a clown Jonathan is becoming, and his reaction to this in the past, pretty much everyone knows, including Jonathan himself, that it's all a big joke. When it comes up he sort of does the just kidding, I love you Julia and everyone else very much line. You can tell he does it just because it gets a reaction.
This is probably one of those "you had to be there" moments, but tonight's reaction from Jonathan was pretty funny. Julia told me what he had said earlier in the day in a sad voice. Jonathan immediately looked at me with a glimmer in his eye and smirk on his face and said, "uh-oh", in a long, drawn out tone in the same way we would have said, "uh-oh, busted". It was like she had ratted him out about something he had forgotten about earlier in the day, yet he knew it was all a joke.
The fact that he said it was one thing. The way he said it made it funny. The joking manner made us laugh out loud. Like I said, you probably had to be there.
I love the lip smacks, concentration tongue, and the look on his face when another kid briefly takes the ball and when "he done good".
Last week we took Jonathan up to National Jewish to meet with an allergist. We were hoping to get more information on the allergy side of things, since the test results came back showing he had higher level of eosinophils in his stinkydoodles.
I'll cut right to the chase. We tested him again for allergies, including everything he's been ingesting, and it all came back negative. We were told the same thing at this appointment as we were told two years ago almost to the day...that there are no reliable tests for allergies of the gut (i.e. non IgE reactions). Jonathan clearly doesn't have a food allergy as most people would think (i.e. an IgE peanut allergy).
On one hand we're glad to know he doesn't have this kind of allergy. On the other hand, we really don't know if there are foods that he's still reacting to after eating. Julia was tested for a wheat allergy and Celiac and in came back negative, yet when she eats gluten her stomach gets bloated and it gives her a stomach ache. Just because he doesn't have the standard allergies, that doesn't mean he doesn't have problems with certain foods. We just don't know until we move him to real food and introduce foods one at a time. After this appointment we are moving forward with feeding Jonathan real food through his tube. One at a time we'll introduce new foods and see what happens, hoping to isolate any problem foods. We also hope that we'll see less vomiting, better growth, and increased appetite on real foods. This is the start of the process to get him off of formula and man-made products.
Almost all of the doctors we've talked to now think what's going on is more likely due to Crohn's-like symptoms. We have a big appointment in Denver next week to talk to an IBD specialist, hoping he can give us some answers on where to go next.
A few days ago a t-shirt that I ordered arrived while I was at work. I snapped the first picture of the present on the doorstep as I was pulling into the driveway at the end of the day. Julia had taken the box, wrapped it, and decorated it for me to open when I got home. Notice the flowers, the hearts, and the clouds raining hearts? She is a very thoughtful person, especially for her age.
Check out this adorable school picture of Julia. Now might be a good time to begin the search for an agent.
