It’s been a very long couple of weeks for us…but, this last week brought the greatest amount of anxiety provoking instances.
Hhmmmm…where to begin.
I’ll start with the bomb…
It came last Wednesday as I was leaving TCH for the wrap up of Ellie’s clinical trial for denufosol. The study went great and Ellie was a model patient throughout the study. She was compliant with each of her three daily treatments and she even took them all by herself! Such a big girl. Anyway, getting back on track to the bomb…
So, about thirty minutes after leaving the hospital my cell phone rang. I assumed it was our study nurse, but it ended up being the kiddos CF nurse. She was ready to read me the results of Cullen’s fecal study. I didn’t pay close attention because I NEVER-IN-A-MILLION-YEARS expected to get anything but a normal stool sample report.
And…insert BOMB drop here….
**Cullen tested below the low-normal range to be considered pancreatic sufficient. Which you guessed it…makes our little angel pancreatic insufficient. On top of being completely unprepared to hear this we are now frantically scrambling to see what this will mean for him in the future. There is some great educational information in the article I linked above…please read it if you know us, but don’t know CF well because it will give you glimpse of what CF can look like. To all of the CF’ers out there that will read this…it kind of paints a dark picture of CF, but I thought some of the information was very interesting.
So, after frantically calling Somer, crying A LOT and talking with the dietician(who suggested I increase protein and calories, but not Fat) we are going to reevaluate his stool next week when he goes in for infant PFT’s…and pretty much breastfeed him until he is like an adult! Not really, but breast milk is the VERY best for kiddos that are insufficient because it breaks down on its own making it’s fats and nutrients easily absorbed by the CFer that is insufficient and doesn’t require enzymes. We will continue breastfeeding well beyond the first year even though the introduction of solids.
I’ve said it before…this disease SUCKS. Just because we don’t look sick doesn’t mean there isn’t that one bug waiting to jump on a little bacteria and wreak havoc on the old respiratory system. In addition to his stool report they discovered that Cullen cultured klebsiella in his sputum culture. WOW! That was a fun one to research…I’m holding my breath that no other little bacteria friends find this klebsiella and take a trip into Cullen’s respiratory system…
My life is now a series of worries about things I can see and NOW things I cannot see! Fantastic!
So, Thursday flies by without a hitch…and then comes Friday.
Friday, Friday, Friday…
Well, Friday started by packing a yummy lunch so that we could head to “Bennett’s Park” for the day with our friends. I made goodies at home and then drove through Chick.fil.a for Ellie’s treats. We made it to the overcrowded park, but didn’t let the crowds detour us or our plans. We had a blast picnicking with Ayden and Kaitlin and even the strange man who emerged from the men’s restroom wearing a dingy cookie monster costume.
NO: he wasn’t part of any kids birthday party
NO: he didn’t know anyone currently playing in the park
NO: he didn’t stick around long…after a short jaunt through the part he was off to a car waiting for him in the parking lot and off they went…
Strange? Absolutely!!! My luck…right?
After two hours of sweating to death outside happily playing outside with our kiddos, Kaitlin and I decided to head to the mall.
Five minutes later I was parked in the front of Ma.cy’s and exiting my car to enter the back seat and console Cullen. I had my keys in my hand and entered the back seat of my car. After stroking Cullen’s head and talking for a minute he calmed down and I exited the back door leaving my keys on the diaper bag and entered the rear of my SUV to get the double stroller.
I grabbed the stroller, set it up and went back to Cullen’s side of the car to get him first and…it was Locked!I ran to the rest
of the doors and they were all locked as well.
Both of my babies were in my car that was OFF and they were LOCKED in it!
I freaked out.
Kaitlin tried to calm me down…bless her heart…I just couldn’t!
I ran into Ma.cy’s while Kaitlin stayed with the babies and yelled at the first person I could see that my babies were locked in my car and we needed emergency assistance immediately.
Within seconds security personnel from the store were outside as well as a very sweet man that I ran up to screaming HELP ME PLEASE MY BABIES ARE IN MY CAR AND IT’S LOCKED…I am sure he thought I was nuts, but he was a wonderful Christian man and he stayed through the entire fiasco.
So, before the fire truck got there several people tried to get Ellie to unlock her Bri.tax car seat and it just wasn’t going to happen. Cullen was SCREAMING and Ellie just sat there very calmly stroking his cheek and reading her chick.fil.a book we got in her kids meal…pretty much the whole time they were in the car. One of the only times I looked into the car I saw sweat beads forming on Cullen’s head the size of dimes and that was when I totally fell apart.
This instance was truly a living nightmare. The only time I can recall that fear is the day we got “the call” from Bennett’s doctor saying they were going to try to keep him alive so we could say goodbye.
Debilitating fear…
Adrenaline…
A million prayers…
That’s what I felt at that time.
At 16 minutes of the babies being in the car the firemen were trying everything they possibly could to get in my car. NOTHING was working.
After 20 minutes I told them to break a window. I didn’t want my babies in that car one more second.
Before I even knew what was happening I distracted my precious little angels and the firemen busted the back window on the opposite side of the car.
I ran over there and tried to open the door to get Cullen out, but they still couldn’t get the doors open. Finally, they did and I opened Ellie’s door and ripped Cullen from his car seat. I can’t even remember who got Ellie. We immediately went to Kaitlin’s car (who happens to be a NICU nurse) and got the babies checked out. I had to strip Cullen down b/c his outfit was soaked and we gave him water in order to get fluids in him quickly. Ellie checked out just fine and actually the firemen said that they had never seen such a little girl stay so calm and take care of a smaller sibling. They suggested I reward her in whatever way we typically reward her. DONE!!!
The rest of the story is just as bizarre, but I’ll spare you the details!
The babies were both fine and very tired from the days drama!
B got my window fixed that day at the dealership and $520 later we discovered I could have just called Onstar!!! Oh well! I’ll know for next time I do something totally stupid!
The saving grace for my babies was their guardian angel Bennett and the fact that it was only 87 degrees that day!
Speaking of Bennett…Ellie has been speaking TO him several times this past week.
Thursday, while I was cooking breakfast Ellie stood up on her stool and told me that Cullen was in the living room talking to Bennett. (Cullen was in his swing cooing away)
She went on to introduce Cullen to Bennett and so on. Chills were running up and down my arms.
On Friday, she told me Bennett was very excited we were going to see him at his park…
Then today as we were leaving for gymnastics she stood at the front door turned back toward the house and said, “Bye bye Bennett, I love you.”
Chills…
She told me in the car that Bennett is living in the flowers…he likes the pink ones she says!
Innocence…
I am so blessed.
So, after all of that my precious little miracle man had a milestone day today…4 months old.
1/3 of a year old
122 days old
My precious little fat man is getting so very big…and losing his hair along the way!
Pictures to come soon…
Blessings,
Angie
