Grace Unhinged: Not feeling well

Friday, November 14

Not feeling well

Tommy's g-tube area is infected. The infection has grown quickly. Thanks to Miss Sherri for a phone call today. It took three doctors this afternoon to decide not to admit him to the hospital. Heavy sigh. This time he is on two types of antibiotics at once. They took a swab from his g-tube area and the results will be back tomorrow from the lab and hopefully we can get down to just one antibiotic.

Words that don't go well together.... Hirschsprung's Diseasse and antibiotics. This will be a poopy weekend for sure.

But as long as Tommy starts to recover and feel better we will be happy. If anyone has ideas on keeping a g-tube site a little cleaner let me know. We have had the Mickey since Oct 20th and I struggle with it's daily care. Ideas?

Our kids

We hope you find this journal informative and encouraging. Our family includes Hannah (19), Nate (18), Tommy & Liam (7 year old fraternal twins). Hannah is a junior in college, loves soy mochas and spending time with her family and friends. Nate is a freshman at UCSB and is on crew which he loves as well as beachcombing and spending time with his family. Tommy and his twin brother Liam were born on the 12th day of the 12th month of 2006, 12 minutes apart. They are VERY active seven year olds! Liam loves to ride his bike, play basketball and read. Tommy loves to play soccer and anything with Woody or Buzz from Toy Story.

Tommy was born with Down syndrome and Hirschsprung's disease. He had a successful pull-through repair in December 2006, open heart surgery in June 2007 (complete AV canal), surgery in October 2007 to place a G-tube, ear tubes and fix a hernia, and June 2009 to place a second set of ear tubes and clear clogged tear ducts. He was diagnosed with polysaccaride antibody deficiency syndrome (PADS) a moderate immune deficiency. And had moderate-severe sleep apnea and tried to use a cpap while sleeping until he had his tonsils/adenoids removed which now he has no noticable sleep apnea and thank goodness no more cpap machine. In the Spring of 2012 his platlett count continues to decrease so we will be watching that closely but now in 2013 it has stabilized.

"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

We live each day to it's fullest as tomorrow isn't guaranteed. "Today is the day the Lord has made; let us REJOICE and be glad in it." Psalms 118:24

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Friday, November 14

Not feeling well

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