"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Tuesday, April 6, 2010


So, I've been absent..again! Sorry about that. I haven't felt very well. Dizzy spells. I suspect due to an inner ear infection. However, I'm not a doctor and should not be trying to diagnose myself. If I had insurance, I'd be at the doctor. But, no insurance, so no doctor. But that's another post for another time.

Over the past few days, I've been reflecting. Reflecting back regarding Carly's life. This Easter marked a 5 year anniversary of Carly being inpatient on the 7th floor, of Mott's Children's Hospital. We were inpatient because of a very rare blood infection that kicked in while we were heading to clinic for a regular appointment with Oncology.

While we were in the clinic's lab, this blood infection hit. It hit fast and hard. Carly stopped breathing during a ordinary lab draw. My mom was with us, as she most always is. Mom grabbed Carly off my lap and proceeded to reach into Carly's mouth to pull out a cracker that Carly had been eating. Mom thought Carly was going through the motions of choking. In the meantime, an all out fiasco ensued. To the point that the lab called 911. An ambulance came, doc's from all over UofM came rushing into the cancer clinic's lab. Finally, everyone agreed Carly was stable. Therefore, she was strapped to a gurney and ran through the halls of UofM's basement. Destination, the ER.

Long story short. We were admitted that day. Carly had gone sepsis on us. It happened that quickly. No signs of illness that morning before heading to UofM. She was acting fine. No fever. NOTHING. It hit that fast.

Carly ran a temp of 105 the rest of that day and for 2 days after the fact. All lab work, cultures everything kept coming back negative. She was placed on several IV antibiotics. It was one of the most scary moments that I have ever witnessed. I thought Carly was dying right there in the lab that day.

Finally 4 1/2 days after being admitted, we had a diagnosis: Serratia Marcescens. A potentially fatal blood infection. The reason for fatality; it's resistance to many antibiotics. How in the world, Carly pulled through this is a mystery to all of her doctors. Matter of fact, the head Oncologist at the Ped's Cancer Clinic, came in to see Carly. He told me, "we believe we have the ability to turn this around. It's not to late." Talk about a scary times.

Five years ago, on Easter night, (we had already been inpatient for several days.) I discovered that Carly had no use of her left arm and hand. I was certain she had had a stroke. I begged the 7th floor docs to call someone. Anyone. I wanted her to have a CT scan. I begged and begged. Then, 22 hours later, I told the nurse that if she didn't get a CT scan scheduled ASAP, that I was going to unhook Carly's IV, and take her down to the ER. Well,,,, we were headed down for a CT scan within 20 minutes. This was when we learned that Carly's brain had swollen. We also discovered that, at some point in her life, she had suffered a stroke.

As I look at Carly today. I can't believe it was 5 years ago. Five years ago, we had such a gravely ill child. Five years ago, we were hit with yet more terrifying news regarding Carly's health. Five years ago that we faced a Neurosurgeon who was ready to jump in and open up Carly's head to relieve pressure off her brain. Five years ago, we were sent home from the hospital on 8 different IV meds which had to be given to Carly around the clock. With no help from a home health care nurse.

Often times, I sit and wonder, just how on earth all this could happen to one tiny child. How could one tiny child overcome so many illnesses, so many health crisis? How?

Another reflection this week. The anniversary of Carly's first heart surgery. April 5, 2002 is when I handed my 8lb 8oz., 3 month old over to the the surgical team. Wondering if we would ever look into her beautiful blue eyes again.

Many times, people have asked me how in the world I've done all this. How I've been through all this with Carly. How I haven't lost my marbles...Ashleigh would quickly jump in and tell everyone that I did actually lose my marbles! She may well have something there! The only response I ever give, "Because Carly keeps on marching forward".


Kristin said...

Fighters can be princesses too!!

Lacey said...

Thats exactly right, they keep on going and so do we! I definitely lost my marbles a few times during our darkest hours!

Tina said...

I am amazed at your strength...I know when things test us many of us find an inner strength we didn't realise we had. Carly is an amazing little child and you are lucky to have her. I hope all the hard times are behind her and she can concentrate on enjoying the rest of her beautiful life.