Tuesday, March 4, 2008

Three stuffed animals and a variety of stickers

We had our appointments this morning at OHSU and Quinn was a total trooper! X-rays, meeting with the CF team, and lab work (he has great veins according to the technicians)--Quinn made it through the maze with marginal tears and we left with three new stuffed animals and a variety of stickers.

We appreciate your prayers and encouragement and wanted to let you know what the "big check-up" revealed. First, Quinn is doing well over all. He is full of energy and running commentary. He is a man on the move and curious about everything he sees which was evidenced by his exam of the small exam room we were in.

The feedback from the doctors revealed that there are some steps we need to take in order to be proactive and aggressive in addressing two specific areas of concern. Quinn was prescribed two new drugs that he will begin to take--these drugs help break down build up/blockage that was revealed in the lung x-rays. The blockage is not severe but it does exist so we need to respond to it. We will also be doing daily CPT (chest percussion therapy) which means we will use something like a small rubber mallet to pound on Quinn's back and upper chest to help loosen up the mucus blockage.

The other area of concern is Quinn's growth--height and weight. Eating has been a challenge for Quinn and the reflux medication that he began taking in December has had a big impact on keeping things down. Quinn still hasn't been powering down the food even though we would love for him to eat every Happy Meal in sight! As a result, the CF team is recommending Quinn receive a feeding tube. The tube allows for high quantity of calories to be provided (often this feeding is done at night) and for kids who receive these feeding tubes, weight and height gain are generally seen in about four months. Growth is helpful in multiple ways including in overall health so this has multiple benefits. When a feeding tube is put in, they are also recommending that the surgeons tighten Quinn's stomach which effectively ends the reflux/throwing up. The team thinks that the throwing up could eventually create complications with his lungs if stuff gets into them, plus it helps Quinn keep his food down.

Is this ideal? No. Did we expect this? No. Can we do this? Yes. Will Quinn do well? Yes.

We already have an appointment for this Thursday morning to consult with a surgeon at OHSU. We will have more information after this initial consultation.

We value your prayers for Quinn--that the Lord would heal him, that the drugs would be effective, that Quinn would be receptive to these new additions to his life, that we would know how to best care for him, that he would continue to love to run and laugh and watch Mickey Mouse and explore...

We value your prayers for our family--that I wouldn't ruminate on this news but would move forward, that we would have wisdom to know what decisions to make, wisdom to navigate paperwork and insurance, and that the Lord would minister to our hearts and minds as we need it.

We have much to be thankful for and we want to communicate our love and appreciation to all of you. On March 31st we celebrate Quinn's second birthday! And oh what a great day that will be!

1 comment:

Aj Schwanz said...

Quoting Judah singing one of his favorite songs: "Hahwoo, hahwoo, hahwoo, hahooyah; pwaise ye whord!" :) Such great news! Challenges lay ahead, but oh: what a wonderful group of support you have to walk alongside (or carry or skip or chase after a certain Mickey Mouse adorer). I'm so thankful you live where you do to have access to doctors and treatments. Happy soon-to-be birthday, Mr. Quinn.