Tag Archives: Pneumonia

Fighting an uphill battle.

21 Apr

I started writing this post shortly after Christmas this past year. It is a very difficult thing to talk about especially because it is so close to home. I originally wanted to title it 11 days, because in 11 days one family’s life changed forever. I’ve decided to broaden things a bit as I’m hoping this post will educate others about how dangerous a simple virus whether it be a cold, flu or GI bug can be to a medically fragile child.

This past December a brave little man from our CDG family was admitted to the hospital. For our kids this is a common occurrence, especially around the cold and flu season. This little superhero was otherwise stable in the weeks previous to this admission. He was probably in contact with someone who had a bad cold or some other type of virus that his body couldn’t fight off. Whatever disease a medically fragile child might be fighting chances are their immune systems are extremely low to non-existent. This is the case with my little Ladybug and other children with Congenital Disorders of Glycosylation.

After a few days in the hospital pneumonia set in. The entire CDG family was pulling for a speedy recovery for this little guy even though we knew it would be a struggle. He had overcome so much previously, everyone knew he was a fighter.

Around 9 or so days after admission his mother was told that he now had ARDS. Acute Respiratory Distress Syndrome is the sudden failure of the respiratory (breathing) system.  It causes a build up of fluid in the lungs and when there is fluid in the lungs it means less oxygen is able to reach the blood stream. This in turn will deprive your organs the oxygen they need to function.  Despite everything no one lost hope – our kids are fighters.

Day 11, December 24, 2013. Christmas Eve. This amazing, strong, adorable, little 5-year-old CDG superhero gained his angel wings.

This was devastating on so many levels for me. First, our CDG family is very close and although many of us have never met in person we still love each and every single child with CDG as if they were our own. Second, because this happened in as little as 11 days to a child with the same disorder my 4-year-old daughter has.

I’ve said it before and I’ll mention it again. I don’t want to keep my little Ladybug in a bubble. I know that when she goes to school, the grocery store, birthday parties etc. that she is always at risk for catching something. This is a risk I’m willing to take to give her the best “normal” life she can possibly have. I do however feel very, very strongly about others knowingly exposing my child or any other medically fragile child to any kind of sickness.

If you have had a cough and sound like a barking seal, runny nose with green slime, fever, diarrhea or vomiting within the past 24-48 hrs please, I beg you, stay home!  That plate at Easter dinner can be set aside and dropped off, your child will eventually get over not going to the birthday party because they have a really bad cough. It’s this kind of selfishness of people that absolutely boils my blood.

My hope was and is, that this post will help in some way open people’s eyes as to how dangerous viruses can be not only my sweet little Ladybug but to every child with a low immune system.

 In loving memory of Brady and all of the beautiful CDG angels. 10299503_10201623277615055_1704163598_n