January 20, 2016 Tony

Chillin’ for Chace,TCPBA getting cold for your cause

We will be (at least some of us will be) jumping into frosty, frigid, frozen Forest Lake in February to raise funds for our organizations. The Plunge is on February 20, 2016, at the Lakeside Beach in Forest Lake. For more details see www.winterplunge.kintera.org.

Chace Linnell is 7 years old and full of charisma. He was premature, born at 36 weeks. He was only 5 lbs 3 oz. Chace has Goldenhar Syndrome or oculoauriculovertebral dysplasiaas or hemifacial microsomia as it is sometimes referred to. A very rare congenital birth defect that only occurs 1 in 3500 to 25,000 births. The way the syndrome effected Chace was that the left side of his face was very underdeveloped. His left ear and ear canal is malformed (microtia) and deaf. His left eye is totally blind and the iris is really small (coloboma). He had a small cleft lip as well.

The biggest issue for Chace is that his jaw is so small that it caused him to have breathing problems due to his trachea being so small and floppy so he couldn’t breathe on his own. So it was determined that he would need a tracheostomy which is a direct air way through a hole in his neck in which a tube was placed so he could breathe. He was in the PICU for 18 days. He went home and had a trach for two and a half years. In that time he had multiple surgeries and procedures. Then it was decided that he would have the surgery that would change our lives. A total airway reconstructive surgery. Bone was taken from his rib and formed in the shape of a football and placed into his trachea to make it harder and open. His trach was closed and he was at the hospital in a drug induced coma like state for 8 days. He then recovered for another 7 days and he went home. He continued to have some issues but they were smaller as time went on. Surgeries like ear tubes, adenoid removal (which had RSV as a complication) He had his skin tags and cleft lip repaired. Then life was pretty normal for a while, we dealt with sicknesses often, but he was able to enjoy being a kid. Then because he continued to have sleep apnea and breathing issues while sick and sleeping. So since he was older and bigger his craniofacial surgeon decided it was time to have his small jaw lengthened. This was a long procedure which included two surgeries in two months. He had his jaw sawed into and a distraction unit placed into his jaw. Then we had to turn a screw that was sticking out of his jaw for three weeks. Then we had to let bone grow into the space that was made for about 6 weeks. He had a surgery to remove the distractor. The surgery was helpful and made some difference for eating and breathing, but a year later he continued to struggle when he got sick and while sleeping, albeit not as severe as before the jaw surgery but bad just the same. So his ENT decided to give him a nasal surgery that opened up his sinuses. This was a recent surgery that happened in Dec last year, this was his 21st surgery or procedure under general anesthesia. He is doing pretty well now, and hopefully his will not have any more surgery this year. He is going to be followed to get a bone conduction hearing aid sometime in the future as well, we had to wait until we got all of his breathing issues under control. This hearing aid would require another surgery so that a magnet can be placed behind his ear to hold the bone conduction hearing aid. Someday he might need another jaw surgery but not for a few years. We are looking forward to a break this year, and we pray that will come true for Chace.

Chillin' for Chace Personal Image

Event Logo

– See more at: http://winterplunge.kintera.org/faf/search/searchTeamPart.asp?ievent=1144944&lis=1&kntae1144944=96BAFEA13E0F427CB08DAC3E4FB540AA&supId=0&team=6619925#sthash.cVjUBRxA.dpuf

TCPBA Contact Info

We welcome you to contact us for more information
about us or any of our events.