Wednesday, May 28, 2008

At this point, I am sure everyone would like an update on Wes. His palate surgery has AGAIN been delayed. Hate to even stop and think about the original plan to have his palate closed at 8 months old. Now with the passing of his second birthday, he still waits.
Wes has been a busy little man since Feb. He was hospitalized for aspiration pneumonia in his right lung, then two months later meningitis. He just finished another round of antibiotics for aspiration pneumonia in his left lung. For the past 5 days he has been spiking high fevers. Yesterday after a battery of blood test, his fevers dropped to low grade and he has been fever free for about 12 hours now. The high fevers every few days seems to be his norm lately. Dr. Curry did some blood test on his immune system and is giving him a booster shot tomorrow morning. Poor little guy...

Here is a picture of Wes during one of his weekly visits to the best pediatricians in the world, Dr. Curry!

As usual he is not letting much hold him down. Biggest challenge is keeping him from eating orally, but with the bouts of aspiration pneumonia we have to stay safe and get him through these next two surgeries. His palate surgery will blessing.
Wes' ENT in Chicago has really caused some frustration. His local ENT has been sharing her concerns with him concerning Wes apnea, since May 07. He has dismissed everyone's concerns with Wes' breathing. I was really discouraged in Feb when I mailed a dvd overnight of Wes' breathing to him and scheduled an appointment. When Wes ended up in the hospital instead, this ENT could only find the time to send his resident to talk with me, who knew absolutely nothing and had the same to offer.
The ENT in Chicago finally has decided to take time to evaluate Wes' breathing. No problem, he has only waited until the plastic surgeon and neurosurgeon set a date for his palate repair and saw this video. There have been so many opportunities for him to discuss this plan with us. Wes local ENT does not feel comfortable doing his tonsillectomy considering all that Wes has going on, which leads us back to Chicago.
Wes is scheduled to have his tonsils removed June 18th and palate repaired August 22nd, pending a sleep study. For now we prayer for his lungs to clear and him to be healthy and strong for these next two surgeries. It is going to be a long summer without Cheetos!

Who can resist those beautiful blue eyes!!! Had to share this beautiful flyer. It is for a fundraising event for FACES. This organization has been a wonderful resource in our journey. Thank you to everyone at FACES! Special thanks to Stephanie who has lended her ear through some trying times.
There are many ways to help this organization in their efforts to assist those who have craniofacial differences. This is one organization that you can trust benefits those facing medical challenges, like my little man.