I Am "6"

Submitted by Colleen and Derrick on Tue, 06/22/2010 - 8:45pm.

I am “6”… I lived the first 14 months of life in the hospital… stuck in the a crib… and at times isolated because of infections I had or infections others had… At 15 months of life my true medical journey began… I have had more surgeries then most people have had in their entire life… I suffered every day from bowel failure… which led to bacterial overgrowth in my intestines… which led to pain, nausea, retching, vomiting, & diarrhea EVERYDAY!! I was unable to eat by mouth… which meant I needed to live on TPN (IV nutrition) which required me having a Central Line… I suffered from line infection after line infection… life threatening blood infections…. I was given a life expectancy of 4 to 5 years… Here I am at 6!!

I did NOT have the normal infant, toddler, pre-school experience… As a matter of fact it was far from NORMAL.. During my 3 yr old pre-school program I got extremely sick with a fungal sepsis and that was the end of school! Then came the 4 year old program… and I got the double whammy fungal and bacterial sepsis… In 2007 I suffered from “13” episodes of line infections.. In 2008 with my health failing and surgeries no longer working Transplant was my only HOPE!!!

After almost 1 year of waiting… I was given a second chance at life… That second chance has been like climbing Mount Everest… they took my failing intestines and replaced them… just imagine… having your intestines taken out and replaced with someone else’s… I spent weeks with 2 drains hanging out of me, and an ileostomy (pooping in a bag)… I had colonoscopies twice a week in the beginning then weekly… I went home with the drains and ileostomy… only to return to have the drains pulled out a little every time I went for a check-up… In June I returned for the closing of my ileostomy…

September came… I was eating by mouth… tolerating tube feedings… and LIVING LIFE!! Free of pain… Free of diarrhea, nausea, & vomiting… Then October 9th came and I was fighting harder then I had ever fought before… FOR MY LIFE… on life support with medications sustaining my heart and blood pressure… flown to DC… upon arrival in DC they worked hard to save me… With questions of whether I would make it through the weekend… I pulled through!!! RSV, Swine Flu, Pneumonia, and Adenovirus… and then November was the flu… December was pneumonia… January was rejection… February was pneumonia… March was sinusitis & the new diagnosis of Diabetes…

Remember... I am “6”… My day starts at 7:00 AM with my first round of meds… 7:15 is my blood sugar… 7:30 is the second round of medication… 8:00 is off to school.. 10:00 is blood sugar and tube feeding… 2:00 is blood sugar and tube feeding… and 6:00 is the same… 7:30 is my first round of night time meds… 9 is my second round of meds… and at 10 it is time for my blood sugar and to be connected to my tube feeding for the night… My blood sugar is checked at 12 am & 3 am.. along with going to the bathroom because I am getting 1500cc of formula through the night!!

YES!! I am a 6 year old little boy.. who has had more surgeries then most of the people I have met, probably put together!! I have had more endoscopies and colonoscopies then most grown men and women… I spend more time in the hospital then most people do in a lifetime…

Yet, I LOVE LIFE…. I will never be at the top of my class… Just the fact that I am in class is a blessing… My passion is baseball… Although I may not make it to every game… that fact that I am still able to stand and swing a bat is a miracle… I may not be a perfect kid with perfect behavior, but be honest if you lived my life would you be perfect…
I am a 6 year old little boy… just trying to live a normal life… with a far from normal situation…

My good days must be cherished… My milestones must be held close to heart… & Special memories must be held like treasures!!

PS... this is a fraction of his life... we didn't cover doctor visits, therapy's, lab work, diagnostic testing, and so on...