Monday, March 24, 2008

Happy Easter!

Easter 2008

Saturday, March 15, 2008

I wonder what he is thinking...

Quinn's surgery postponed

We were hoping to send an email after Quinn's surgery on Monday BUT wanted to let you know that because of Quinn's cold, the surgery has been postponed. Some head congestion and a cough make it such that it would not be the safest decision for Quinn to undergo surgery as planned. At this point, we will be waiting until the third week of April for Quinn's surgery.

In the meantime, we are going to explore some different resources for Quinn to assist with his eating. We will connect with a couple of new people to get a second opinion about how to best help Quinn with some of his "food stuff". I'm glad we can pursue this option and hope that it will present some new ideas and helpful outcomes.

Thanks for riding along with us--it feels a little bit like being the pinballs in a pinball machine :)

Thanks too for your continued prayers for Quinn--we are looking forward to celebrating his second birthday on March 31st. Can you believe it!? Quinn told us last night, "My birthday is coming up!"

Wednesday, March 12, 2008

St. Patrick's Day at the Hospital

It looks like we are set for surgery this Monday, March 17th. We received news this morning that insurance had given approval (11 days before they were required to do so) and Quinn is supposed to be at OHSU at 8:30AM Monday morning.

Thursday and Friday we'll be having some phone conversations with staff at Doernbecker's to see what additional ways we'll need to be prepared for Quinn's return home and this new change in all of our lives. One area we have to check on is that in the last 24 hours Quinn has developed a head cold. We have to check to see if that has any impact on the ability to do the surgery on Monday.

A few ways you can pray: for Quinn's cold to be healed and for Ryan and I to remain healthy, for the surgery to be free of complications, that we would all transition into this "new normal" with confidence and patience, and that Quinn would respond well to the feedings. One special point to note: the surgeon prefers kids to stay at the hospital two to three days for observation and teaching post surgery. Our insurance has only given approval for Quinn to stay 23 hours past surgery and will review any requests for a longer stay but we aren't sure what they will approve. Please pray that we will come home when it is the best time for Quinn.

We value your support and prayers...we are hoping we won't have anything more to say for a bit! :)

And on Monday, be sure to wear some green and think of Quinn! :)

Saturday, March 8, 2008

Surgery date postponed

We received some news that Quinn's surgery had been postponed due to an insurance delay. The insurance company referred the request for Quinn's surgery to an internal medical review board so we are hoping to have confirmation about a new surgery date early this week. The surgeon has tentatively scheduled Monday, March 17th (Happy St. Patrick's Day) as the new surgery date. Again, this date depends on insurance approval.

We would ask you to pray specifically that the Quinn's case would find favor with those individuals reviewing his information. Please pray that this surgery would be done at the right time. Please pray that we would hear back quickly from the insurance company (the March 17th date is being held until Tuesday--if we don't have approval by Tuesday, we'll have to consider a later day in March or early April). The surgery is not an emergency surgery or a life or death one--Praise the Lord! However, it is important so we are waiting expectantly for news.

In the meantime, it does give us a little more time to prepare for this surgery and for what we need when Quinn comes home. Thank you so much for praying for all of us and for caring about Quinn. He is so funny--we were shopping at Fred Meyer yesterday and Quinn was drinking some milk and was excited to get the "free cookie" at Freddy's :) As he nibbled the cookie and drank the milk he said, "Mommy. Coffee." and pointed to the Starbucks in Fred Meyer. And who was I to argue with him :) So I had my vanilla latte and he nibbled a cookie and drank the milk.

So...we wait. Thanks for praying. We'll let you know more as we know more.

Thursday, March 6, 2008

Two hours in a small room

Quinn really is a trooper as he was stuck in a small exam room for about two hours this morning--his patience was worn thin!

The surgeon we met with had a cancellation while we were with him and offered that opening--this Monday for surgery. In further conversation with the surgeon he does not advise doing the stomach tightening at this point so that we can see if the medication Quinn is taking continues to help as well as see how he responds to the feeding tube. If the stomach tightening is needed at a later date, it can still be done.

Monday we'll head back to Doernbecher Children's Hospital on the OHSU campus for Quinn's surgery. The surgery takes about an hour and then the three of us (Quinn, Ryan, and me) will be able to stay in a private room as Quinn recovers. Some places do this surgery as out-patient procedure but (Praise the Lord) OHSU keeps kids for 2-3 days to manage pain and make sure the surgery is without complications. I'm not sure how you keep a two year old in a hospital room but my understanding is that there is a TV/DVD player in each room (I think we may be buying and borrowing "Bob the Builder", "Mickey Mouse Clubhouse", "Handy Manny", "Little Einstein's", and other DVD's we can come up with!) plus the unit has their own supply of DVDs as well as a play room.

After the surgery, Quinn probably won't feel a lot like playing...but he should be more comfortable after the first day and once we come home will just have Tylenol as needed. From the surgeon's perspective, most kids are back to "normal life" within a week. Part of the time at the hospital will be teaching and education for us which is good plus follow up training after we've been home for a bit.

We know that this is the best thing for Quinn. We have concerns that come with the surgery that any parent would have. I sometimes try to play out imaginary scenarios in my head which certainly don't help so I'm working on that. Quinn will be in an excellent hospital with a good staff and we are able to be with him all the time.

We value your prayers--that the surgery would be a great success, that Quinn's body would respond well, that the surgeons, nurses, and staff would be steady and clear in their work, that Quinn would do well spending three days in the same building, that the nutritional plans would come together well for his feeding (both through the tube and regular meals)...and for us...that we would be assured of Quinn's care, that we would be confident and at peace with this new development, that we would be healthy and well to be able to stay with Quinn, and that we would learn all of the new information we need in order to maximize the use of the feeding tube.

Quinn is still running all around--last night at my parents' house he was doing laps. We're eager to see him do that after he comes home next week.

Thank you for your prayers and encouragement!

Tuesday, March 4, 2008

Out of the mouths of babes

Brushing Quinn's teeth in our household is a battle. Period. He has an exciting Elmo toothbrush but it is a frustrating process. Sometimes we don't brush teeth. Sometimes we do brush teeth. Sometimes brushing teeth results in Quinn throwing up. Tonight it resulted in Quinn throwing up and mom being very, very frustrated. Irritated. Angry. while Ryan washed out Quinn's pajamas I was holding Quinn over the kitchen sink in case had more to throw up. And I was frustrated.

Quinn had been crying,
and then said,
"Be patient."

I thought I was going to cry.

Out of the mouths of babes...I think the Lord was talking to me.

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!