Thursday, March 1, 2018
10 Year Anniversary
It's March 1, 2018. As I stare at the date, my mind instantly is overwhelmed. Has it really been that long? Caed is 14 1/2 years old today. This afternoon you will find him sprinting and jumping in this year's first track meet of the season. His coach called him the "Flying Squirrel" last year. He's fast... and can fly. Not only does he have 3 short months left as an 8th grader at Idalou Middle School, more surprisingly...he will be in HIGH SCHOOL next fall!
Caed was 4 1/2 years old when his life instantly changed on March 1, 2008. Trauma struck his body that day, as his surgeon shook her head in disbelief that he had survived it all. Todd and I, of course, found ourselves sitting in the PICU in paralyzing shock over what had just transpired.
To reflect back over the past 10 years and everything this child (and our family) has endured is bittersweet. On one hand, flashes of the most painful months/years of my life can literally suck the breath out of me. Yet, to look back...also forces us to see where we are today. For those that walked (no, belly-crawled) this journey with us from day 1 are possibly as speechless as I am finding myself now. Are we really here? Did we honestly survive that horrific nightmare?
The days were long. The nights were even longer. The separation of our family was almost too much to bear at times. All we were....was instantly gone! To adequately summarize the past 10 years of Caed's health is rather daunting; however, these numbers help put in perspective the magnitude of our miracle:
4 - years old when Caed's midgut volvulus surfaced
19 - days I had with my newborn son before "losing him" for 9 months
4 - days on the ventilator
10 - days spent in PICU
8 - surgeries
90 - percent of small bowel lost
40 - percent of colon lost
4 - blood transfusions
1 - NG tube
3 - catheters
23 - times under full anesthesia
15 - Upper and/or Lower GI's
7 - endoscopies
3 - CT scans
1- J tube
3- nasal feeding tubes
6 - G-tubes
5 - intestinal drains
12 - adverse drug reactions
7 - hospital rooms
73 - consecutive days spent at Covenant Children's Hospital in 2008
117 - days before Caed or I stepped foot back in our home (weekend visit only)
158 - consecutive days of vomiting up to 8-10 times/daily
9 - trips to the ER
164 - days on TPN
1 - Home Health nurse
2 - staph infections in his central line
4 - play therapy sessions for Post Traumatic Stress
84 - consecutive days living in Omaha, NE for Intestinal Rehabilitation
260 - days with a central line
44 - flights Todd took back and forth from Dallas to Lubbock to Omaha
278 - consecutive days away from our home in Celina
283 - consecutive days our family of 5 was separated
25+ - doctors caring for Caed
3 - times with c-diff
437 - days Caed wore an enteral feeding backpack
7 - more trips back to University of Nebraska Medical Center in Omaha
10 - weeks on antibiotic therapy for bacterial overgrowth
1- unbelievable Make-A-Wish trip
1 - hiatal hernia
1 - gallbladder removal
3 - incision revision surgeries
4 - bowel preps
13 - weeks burning his incision with Silver Nitrate
2 - open surgical wounds which had to be packed for 6 weeks
365 - days Caed's gallbladder/incision issue lasted
541 - days Caed was not allowed to swim or take a bath
1, 520 - approximate days Caed had a feeding tube
4 - bone scans
1 - ambulance ride to ER
150 - dollars Caed collected in his "penny bank" for his smiles
1,000 - dollars for 1 month supply of Caed's enteral formula
865, 000 - dollars of largest single medical bill
2,000,000 - dollars in total medical charges thus far...
600 - blog posts...and counting
1 - amazing MIRACLE who was chosen to walk an incredibly tough journey
10 - years the Lord has shown His Faithfulness in our new world of Short Bowel Syndrome
countless..... - abdominal x-rays
countless..... - syringes and other medical supplies used on a daily basis
countless... - vials of blood drawn over the past 10 years
countless..... -nurses who loved Caed deeply
countless..... - cries and screams in agony from Caed
countless..... - times Caed asked "When will I be normal again?"
countless..... - times Todd and I cried out to God to heal our son!
countless..... - tears shed from all who followed Caed's story
countless..... - family and friends who met tangible needs
countless..... - prayers, cards, gifts, visits (from strangers around the globe) which BLESSED us!
countless..... - ways God has and continues to show His Faithfulness...
"Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be." Psalm 139:16
God continues to be so so good to Caed. Not only has healing taken place in his physical body, but more importantly, the Lord has "healed" Caed's heart too! More on that story later...
Currently, we are waiting to hear back from our endocrinologist. Nebraska has been concerned with Caed's lack of growth (which is obviously very normal in Short Gut patients). If he has a delayed bone age, that's a great sign! He still has plenty more time to grow. If, however, his bones measure that of a 14 year old....he is running out of time. The doctor has a plan of action if that is the case, and we have felt nothing but peace after meeting her and discussing Caed's history. Definitely an answer to prayer!
God's faithfulness continues.....