Bronchoscopy results

First, thank you all for your prayers and support for Preston, Liz, and our families. We are so blessed and praise the Lord for all He has given us. Unfortunately, the news after the study of Carson’s trachea and lungs was disappointing and not what we were expecting. The extent of the tracheomalacia (or floppy trachea instead of a rigid trachea as it should be) is more severe than they initially felt four months ago. As a result, that alone will prevent Carson from having his trach taken out or decannulated anytime soon. However, the most disheartening news was that there has been an increase in scar tissue around the area of his epiglottis (this is higher up and one of the reasons he has the trach to bypass the constricted area). This particular area of scarring is apparently something quite rare and the doctors have very little experience with it. They are quite concerned that it may not respond well to surgical removal. The greatest concern is this MAY ultimately result in Carson having to have a trach for the rest of his life. This had never been discussed before and it was always felt the trach was temporary, at most a couple years, before today’s news. This is extremely hard as there are many limitations that come along with a trach and result in a much different life than we might envision. They believe they would like to try surgical procedures using lasers and removal of the scar tissue, but it will require many surgeries and be staged over the next several years. They are unsure of whether this will be successful. We are all quite sad about this news but know God has a mighty and wonderful plan for Carson’s life. Whether God chooses to heal Carson completely or allow us to see how He will work through any limitations Carson may have, we know he is in control and will give us the strength and grace to take one day at a time. Most assuredly, we are praying for a complete healing of Carson and another miracle as his life is surely a miracle. Please continue your prayers for Carson, good nurses to care for him as this will be much longer term than we expected, and faith and strength for Preston and Liz in this difficult time. As always, we celebrate the miracles we have witnessed and could not be more grateful for the blessings God has given us through these two sweet boys, Carson and Kellen. Life is truly a most precious gift!

On the positive side...

1) Carson was given a larger size tracheostomy tube which will hopefully ease his work of breathing and allow him to come off oxygen even more.

2) Our main day nurse is moving but we have already found another person who we believe is going to be an excellent fit during the day...we were all VERY excited and thankful!

3) And most importantly....we have Carson and the gift of his life is worth every tear and every second of grief. His smile brightens even the most gloomy day!