Sunday, March 11, 2012

Latest news

Whew! To say a lot has happened since my last post would be an understatement. I can't believe we are already 3/4 through the school year. Time flies when you are having fun, or rather when you have 3 active kiddos. We celebrated good health for several months which is quite an accomplishment for our Aiden. Warm weather seems to agree with him, but the winter months are not so kind to his lungs and ears. In November we met my parents at Wilderness in the Smokies for Thanksgiving. It is a hotel/condo complex in Sevierville with indoor and 0utdoor water parks. The kids had a blast enjoying water fun in winter. Aiden showed no fear on the water slides or the wave pool. He loves the water!!! The following Monday Aiden was scheduled to have a bronchoscopy, ear tubes placed, and a GI probe to determine if he actually had acid reflux. When they discovered he was aspirating back in March, they automatically began treating him for reflux, so they wanted to be sure we needed to be treating him. The bronchoscopy showed very irritated and inflamed lungs (not a surprise after spending 4 days at a bacterial laden, steamy, indoor water park). The cultures did grow h. influenza which is a common respiratory bug, so we treated that with antibiotics. Unfortuantely his lower left lung is still collapsed and is now showing some scaring so the pulmonologist started him on albuterol and nebulized saline treatments twice a day, along with chest percussions to keep mucous loose in his lungs so he is less prone to infections. It's time consuming, but he's very cooperative, and that makes it bearable. The GI probe was supposed to stay in place for 24 hours, but only made it about 6 hours before Aiden miraculously manuevered his arm cuffs to pull it out of his nose. We had just picked up Kyle and Cambrie from school and were driving down a busy road in driving rain when it happened. Kyle saw it happen and is now traumatized for life. I had to find a place to pull over and remove all the tape holding it onto his face so that he wouldn't destroy what I believe is probably a very expensive machine. The tape coming off hurt him more that pulling the tube out of his nose from his stomach. He was screaming, Kyle and Cambrie were both crying, and I was standing in the driving rain trying not to cry myself. Not my proudest moment, but at least I can laugh about it now. Thankfully the probe was in long enough to get a reading showing that he indeed does have acid reflux, and probably will the rest of his life. Thankfully, it is very treatable, and we will continue to do so. The gastroenterologist also took cultures from his stomach and determined he had a bacteria in his stomach called h. pylori. This bacteria doesn't cause the acid reflux, but can lead to stomach cancer if not treated. So we tacked on another antibiotic to treat that. Thankfully follow up stool tests show that treatment was successful. The ENT placed his ear tubes successfully and also did a little exploring of the structure of his nose and throat. He discovered a small cleft in the back of his throat that might be contributing to his aspirating, but wanted to wait for a follow-up swallow study to address that. So we've had no ear infections (yah!!) and only one respiratory infection since November. We saw the "team" of doctors again in January. GI has released us for now knowing we will continue to treat the acid reflux (very exciting being released from at least one department at Vanderbilt). ENT and pulmonologist wanted to repeat swallow study to see if he is still aspirating liquids now that he is older. Pulmonologist added steroid to his daily routines to hopefully keep airways less inflamed and therefore keep things moving in his lungs. He also made mention of possible removal of the lower lobe of his lung as the x-ray showed more scaring. This of course was something I didn't want to hear, although expected from the beginning. The original plan was to wait and see if things would improve and heal in that area, but scaring indicates just the opposite. It would be a major operation, but would be so good for him in the long run. We would eliminate the common source of his pneumonias as well as the need for the inhalers and nebulizer treatments. So, we had the swallow study last week and unfortunately he is still aspirating really thin liquids. It's better than before and we don't have to thicken as much, but still a problem. So now the plan is for the ENT to inject a gel foam in the cleft in his throat that lasts about 3 weeks. We will repeat the swallow study during this time to determine if this is why he aspirates. If it's successful, they will place a permanent flap over the cleft, and hopefully eliminate the aspirating all together. If it doesn't work, we will continue thickening liquids until he is old enough to control his drinking better. Sorry for all the medical updates, but I really want a record of Aiden's medical procedures. As you can imagine it's very difficult to keep up with all of it.

Aiden also began speech therapy in December at Vanderbilt (our home away from home). He goes every other Monday. He is doing very well, and the speech pathologist is very pleased with his progress. After 6 months we will do a test that will determine if he is "structurally" capable of making all of the sounds. Having a cleft palate (although reparied) predisposes him to structural difficulties in forming sounds properly. The results of this test could mean another surgery for our little guy. The ENT wanted to go ahead and close his palate further in the back, but our plastic surgeon wanted to do therapy and the test before we put him through another surgery. We agree with him and are thankful he is conservative. He will be doing the "nose job" on Aiden sometime later this year which will help our little guy breathe so much better through his nose. He has a very flat nose, and that will only get worse as he grows. We are just so thankful that he is happy and oblivious to all of these things. He loves going to the doctor and has no fears whatsoever. We also feel very blessed that we have the resources of a great children's hospital so close to us.

Regardless of all the medical "yuck" we've been through over the last few months, life has been great and we've had a lot of fun times. God continues to provide us with daily blessings and more that what we need or deserve. His mercies are new every morning and for that we are thankful. When He called us to this journey, He never said it would be an easy one. But that doesn't excuse us from listening and obeying Him. I think it's easy to think if we do what God wants us to do, he will bless us by making everything nice and easy. But we aren't put here to be comfortable (even though that's a nice feeling). We are put here to accomplish His purpose for our lives, and even though I don't like to admit it, that usually means it's not comfortable. I imagine there are those that wonder if Eddie and I would have adopted Aiden if we knew what his medical future held. I would do it again a hundred times over. He is our son, and God knew that well before we did. The medical stuff can be overwhelming at times, but that's because I feel like I'm not in control. The reality is that I'm never in control even when I think I am. It just helps me rely on Him all the more. And honestly I need that reminder quite frequently. We appreciate your continued prayers for Aiden over the next several months, whatever they hold for us.

Meeting Nashville Predators Patric Hornqvist and Kevin Klein

Making cookies for Santa

Daily nebulizer treatments

Christmas picture

Wave pool at Wilderness in Smokies

Roller skating for first time at Cambrie's b-day party