Just wanted to post some detail on what happened to our precious "blue eyes" Lucas on the off chance that we would forget any details later or that someone could be helped by what happened to him. Before I forget to mention, wasn't Lucas service perfect; we thought it couldn't have been better. Thanks to all who came and supported us with overwelming love and kindness.
Lucas's Pulmonary Hypertension got out of control very very quickly the last month and in the cath lab last Thursday the cardiologist said it was the highest pressure he had recorded in a PH case (and he does 200 per year for the last 25 years). The advanced medicine they were trying, Prostacyclin, actually raised his PH slightly and he was already maxed out on sildenafil and inhaled Nitric Oxide. His lungs had permanent irreversible damage and after he came out of the cath lab we were informed he only had days at best. No one thought it would be that day, but Lucas has always done things his own way. So he waited till we knew, and took away any difficult decision we would have had to make and went home after we laid with him a while. Since he didn't respond to the advanced medicine he would there was nothing else that could have been done even if they would have found this much sooner. He had some great days in the PICU and only wanted to play the whole time, even to the end, he played so much that he even started sleeping less, like he knew. He touched so many people while he was here and we'll miss him so very and painfully much!!
We (Blake, MK, & Pierce) have slipped away to breath and grieve and get to know each other again for several days. We are in northern Arkansas in a cabin near the buffalo national river. Things are very peaceful and healing here... ... (special thanks to Fred and Tammy for allowing us to stay and rest here in their home away from home) We feel like we haven't seen each other's faces in so long, especially Pierce's. He is doing well though. We got here on Sunday and plan to stay for a bit. Yesterday we walked by the river and threw rocks in with Pierce, last night we took in a drive-in movie together(yes, they still have a few of those, this one was the kenda in Marshall, AR)and it was a moment to remember, stars were out like never before and we saw a shooting star during the movie. Today we went shopping a bit in Branson, MO and when we returned the rain on the front porch was so peaceful and soothing. Here is a bit of our get away so far... .... we also hope to go canoeing and find other relaxing things to do in this place hidden from time and almost the rest of the outside world (we do have internet from the Gilbert Cafe across the street though), we'll see what we can get into. The hard part is an empty seat in the car and at the dinner table and missing our baby boy so much.
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Lucas was born to us 5/10/07 and was soon diagnosed with CHARGE. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Lucas's anomalies included with his case of CHARGE include minor heart defects of ASD and PDA, bilateral choanal atresia repaired at four days old, undescended testes repaired at seven months old, and ear abnormalities; also he has reflux and aspirated while feeding shortly after being born and thus had a G-tube and Nissen Fundoplication at five weeks old. Additionally he has PE tubes, very low muscle tone and facial palsy on his right side. Lucas was diagnosed with Primary Pulmonary Hypertension at 12 months old. He showed us how to shine through the rain as he lost his bravely fought battle and entered into Heaven on 10/02/08. He was our miracle on earth the 507 days we spent with him. For more information, visit chargesyndrome.org
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