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

Thursday, May 28, 2009

Carly's story. Part 3

After what seemed like an eternity. The Chaplain came in and spoke with Paul and I. I can’t really recall all he said to us. I do remember that he asked if we wanted him to go pray over Carly. At her bedside. We of course said yes.

The doctor came in next with a couple of pieces of paper in her hand. She sat down and began to tell us what had happened. Also, what was going to happen by daybreak if we did not sign a consent form for a life saving machine called ECMO. She of course ran down the list of what could happen to Carly if we went ahead with ECMO. First - Carly could have stroke, she could die from ECMO itself and it opened her up for numerous infections. As the doctor went on, we learned that Carly had had a pulmonary hemorrhage and was in grave condition. Carly would die by daybreak if we did not move fast and place her on this machine that we had never heard of. I recall asking the doctor what she would do if this were her child. Her response was, “I can’t honestly answer that, because I have no children”. Paul and I talked for only moments. We told the doctor we wanted Carly to live. We signed the forms of consent and the doctor ran (and I mean ran) down the hall. We could here her saying, “mom and dad want her to live, hook her up now”.

My parents finally arrived at the hospital around 3:30a.m. Paul’s mom arrived shortly after. We prayed, cried and prayed some more. Soon my brother and sister in-law arrived with Ashleigh and Brad. We waited and waited. Finally, we were allowed to see Carly. Believe me, no one could have prepared me for what I saw. Here was our tiny little baby, all 8lbs 8oz of her, laying on a gurney with over 21 tubes and wires coming out of her little body. Her fingers and toe’s were still blue. They had been black. She actually flat lined just as they were hooking the ECMO up.

ECMO is a machine that is used for various illnesses. Carly’s heart and lungs were hooked up to this machine. It’s a machine that is basically a bypass machine. Its design is to give major organs a break during a last chance at life type deal. Carly’s heart was allowed to beat every other beat … to make sure it got stronger. However, the ECMO machine took over her lungs. Carly would remain on ECMO for 3 ½ days. We were warned that she might not come off the machine alive. However, this was her only chance.

Her lungs remained very sick. She was soon started on the wonder drug Viagra. Yes, that’s right. Viagra. She was the very first child to ever go home on this drug. It was a wonderful drug for the healing of her little lungs. Well, that and numerous other drugs. She remained on Viagra for over a year until they began to wean her off of it.

Obviously, Carly made it off ECMO. She went on to stay in ICU for a total of 19 days. Much to the doctor’s surprise she went to the main floor. Most doctors, including her heart surgeon expected Carly to stay in ICU for up to 5 months. Glad they hadn’t told me that prior to surgery.

Carly developed a severe blood infection after we had been on the main floor for about 3 days. She was placed on heavy doses of antibiotics, a 10-day course. We were told we could be discharged and go home on an IV. My response was, “NO WAY”. So, we stayed. Finally being discharged on day 31.

Things continued to go well for Carly once we got home. She thrived. Started to make up for lost time in the milestone department. We were thrilled. Of course we thought her heart issues were behind us. Boy, were we ever wrong about that?!

To be continued…


Lacey said...

Hi new friend. I am going to read back in your blog tomorrow, tonight I need to go to bed, my son is 3 with DS, and of course multiple medical problems. Nice to meet you.

Stephanie said...

Even though I know Carly is here and well, your posts have me crying and bitting my nails, thanks for another cliffhanger.I can't believe what she went through,and you as parents...I don't know.. I think I'd be useless in that situation.As I meet parents like yourself and Lacey above me I am just constantly left speechless by your strength.And the one thing so far that all of you have in common is unbelieveable faith.

My name is Sarah said...

This is Joyce. I can't imagine the feelings when the doctor asked for your consent for the ECMO. My heart truly was aching for you even knowing Carly is with you today.

Tina:0) said...

Hello, friend! Thank you for following my blog for Vaeh:0) From the sound of your posts we have quite a bit in common from a heart perspective!

Vaeh has had all 3 of her open hearts at UofM - Dr. Bove is a man we love! She currently is also on revatio, aka - viagra, for pulmonary hypertension.

I'm so glad that Carly is doing well & her counts are going up! Can't wait to get to know you all better!

PS - what part of Michigan are you in? We're in West Central Ohio.

Michelle said...

I can't even imagine what that was like to go through - haveing to make those life and death decisions in seconds...knowing the risks of putting her on ECMO, but knowing what would happen if you didn't. Oh my...she IS a fighter!