Friday, March 07, 2008

Rambling - Mercedes, Guild Gala, Constant Congestion

Again, many thanks to those of you who gave to the marathon a few weeks ago. We had two teams running for Jonathan and you raised almost $18,000 for the Bell Center! We won the fundraising contest!!!

Jamie and I went to Colorado two weeks ago. We kept the boys out of church and school the whole week previous to insure we had done everything within our power to keep them well. They remained healthy while we were gone.

The flu and stomach bug have been running rampant all over the nation and it is no different here. On Tuesday of last week I commented to a friend that we had avoided the flu and stomach bug successfully thus far. That night Jonathan woke up vomiting. I wished that I had never uttered those words. Thursday rolled around and my stomach hurt but I didn't think much of it. Jamie started feeling poorly Thursday night, hurt all day Friday but worked anyway, and then I was out of it Saturday. Saturday was the night of the Guild Gala, the other annual fundraiser for the Bell Center. It is a ball where everyone either dines at the Birmingham Country Club or in someone's home who is hosting a theme dinner. Everyone convenes at the club for dessert, music, and an auction. We missed getting all gussied up.:) Hopefully we will make it next year and I will remember to keep my mouth closed.

This doesn't seem related but just wait...

Jonathan has had constant congestion for as long as I remember - it seems since he had heart surgery. It is probably not that long but I have quit taking him to the doctor for it. Everytime I go, the pediatrician, allergist, or ENT tells me his congestion will pass and that it is not deep. Occasionally, if fever accompanies it, it registers as an infection, and antibiotics are prescribed. The congestion supposedly will clear up by the time he is three years old - when his anatomy develops more and doesn't clog so easily.

After months of Jonathan waking at 5am, coughing for a couple of hours unless sitting vertically, I had the idea that perhaps a trip to the pulmonologist was in order. I consulted with the pediatrician, who agreed. At this point, we had tried inhalers in case the congestion was linked to asthma, allergy testing, reflux meds, and antibiotics. So, we visited the pulmonologist about two weeks ago. He immediately suggested Jonathan do a sleep apnea study - Jonathan's oxygen levels were not optimal. The doctor wanted to do the study to determine if he indeed had sleep apnea and to see if his oxygen saturation levels (sats) changed at night. The conclusion was that Jonathan did not have sleep apnea and his oxygen levels actually both increased and decreased at night.

The next step was to take antibiotics for a week to see if that healed up the congestion. If it did, the doctor thought perhaps that would indicate infected adenoids. If it did not work, his heart might not be working properly. We also were slated to do a modified barium swallow. At the next visit, Jonathan would eat things with barium in them while a moving x-ray showed if he aspirated while he ate.

Jonathan took the antibiotics and readied for the next appointment. However, the vomit episode occurred the early morning of the visit so we had to reschedule. With the antibiotics in his system, the congestion ceased. We arrived today for the appointment and barium swallow. Jonathan was not supposed to eat two hours before his test. I had brought along food for Jonathan in the event he did not eat what they offered him. He spied the food and begged for it. I had been thinking and obsessing about this testing all week and oddly enough, totally forgot he could not eat. I finally let him have a snack and then almost lost it - what was I doing?! We had labored so hard to get the timing right and here I was letting him eat! I was upset because I thought we would have to reschedule again and I had been praying for his health all week to remain good despite his exposure to other kids. Oh, I didn't want to have to come back...

I found comfort in the fact that we were in the waiting room with Jesus and Enoch. A mother kept saying, "Jesus! Come here! Enoch, don't do that! Jesus, put that down!" It was comical! I was glad Jackson was not with us - he definitely would have had questions. We have gone to so many doctor appointments now that I wonder if Jackson may go to medical school. After becoming bored with me and Jonathan at these visits, Jackson begins inspecting all the equipment in the room and asks me to tell him about all the charts on the walls, pretending to understand exactly what I am saying.

I felt overwhelmed today with trying to coordinate the appointments, making certain we checked this one off our list so we could rule out Jonathan's lungs, and trying to shield Jackson from it all by getting him a babysitter. Then I realized, as I mentally complained, that we are fortunate to be close to a wonderful medical facility. As I see the other patients and their parents, I am grateful for our situation.

What is neat for me personally, is that I don't feel like a victim and don't see Jonathan as one anymore. He drives me nuts with his antics but I am thrilled he is moving, curious, and expressing himself. I tire of the incessant doctor appointments simply because I long for Jonathan to enjoy good health. I do not resent the DS - in fact, selfishly, I would not trade it. Having Jonathan's diagnosis in my life has made my relationship with Jesus real and not academic. I am living my faith rather than simply studying it.

Back to today's doctor's visit... The conclusions were that if Jonathan encounters more respiratory problems, he should take antibiotics more quickly to combat them instead of waiting a week or two. The doctor explained that kids with DS have weaker immune systems and are more susceptible to respiratory illness. This appears to be Jonathan's issue. The OT who administered the barium swallow told me that she did not see any aspiration or reason to believe his eating was causing problems. Good to know.

That, in an unorganized fashion, has been the last few weeks of our existence. Thanks for letting me share!

Julie
juliewarren@mindspring.com

Thursday, March 06, 2008

MM Total, Valentines' Day, Sleep Study, Skiing

Josh, Joseph, and Jess all ran on the Warren Averett team, averaging seven-
minute miles, coming in second overall as a relay team, the first Bell Center relay
team. Overall, we raised over $17,000 and we won first place in the Bell Center
fundraiser!
Jackson and his friend, Natalie, at their Valentines' Day party. Jackson told me he
will be marrying Natalie soon.:)
Jackson decided to wash dishes for us one evening.

Jonathan went to see the pulmonologist a few weeks ago to
get some advice on a constant cough. The first step was to
rule out sleep apnea.
Jonathan got wrapped up like a mummy!

This was reminiscent of the heart surgery.

Jamie and I went to Breckenridge to ski a few weeks ago. No kids!

Our instructor, Ruxie. She was from Romania and very patient.

Jamie and I on the mountain.

Me and Jamie.

Stopping for lunch.

Jamie ate healthy, I ate junk!