Tuesday, November 19, 2013

What's next.

A question I've been asked numerous times over the last week. 

Eli will remain in the CICU until his first biopsy on Nov 27. This biopsy will tell us if Eli is accepting his new heart. All signs point to yes, but we don't know for sure. 

Once the biopsy comes back and all is good. We will be moved to the step down floor. Here, we will learn how to care for eli more and be able to do normal things with him. We do not know how long he will remain on the step down floor. 

Once they feel he is ready to be discharged. Eli will be sent to a hotel nearby the hospital for the remainder of the time required. He has to remain around the hospital for at least 8 weeks post surgery. So that puts us towards the middle of January to go home.

A hotel? Why not Ronald McDonald? Well we live fairly close to the hospital as it is. So we were only able to get a room at Ronald McDonald because Eli was so critical and remained in the CICU. Once we leave the CICU. We don't qualify to stay at Ronald McDonald anymore. The hospital will pay for a hotel but it's just another inconvenience Danny, Lucas and myself have to work with. Our schedules are already crazy. Throwing a hotel in the mix just doesn't sit well with me. 

So that's the plan. Can you believe that in just weeks we will be making our first trip home! As a family of 4!!!

Sunday, November 10, 2013

THANK YOU x 1000000000!!

I can NEVER possibly payback the hundreds and hundreds and hundreds of people who have touched our lives in the past couple of months. I have wracked my brain, trying to come up with SOME way, ANY way to express our sincere thanks to everyone involved in helping Eli. I have come up terribly short of being able to possibly pay back everyone. I can surrender and just say thank you…again and again and again. I will never stop saying thank you.

The bottom line is, I want to say thank you. I can’t repay you. I don’t even know all of you who have loved and supported Eli, but know that we felt of your overwhelming support. I have experienced a sense of a bit of the weight of the worlds being lifted off my shoulders because of ALL of you! I have always been a believer that the world is full of good people, that humanity is still alive and well in a good portion of those around me. This experience has reinforced that belief. I saw the good in the world around Eli first hand. We can’t repay each of you personally, but we have decided that every year, on the anniversary of Eli's new heart-November 8, we will pay it forward, so to speak. Finding some good to do, reaching out to others who are needing the support and love that we have received from each of you. Your influence in our lives is impossible to put into words, but know it is HUGE. We will take what you have given us, and put it to good use for others whose hearts are broken, emotionally or physically, and attempt to help heal those broken hearts, just like you have done for Eli.

Xoxo 

Friday, November 8, 2013

TRANSPLANT UPDATES

Surgery can be anywhere from 2-12 hours. We will post the updates on this blog throughout the day. Just keep checking. I will have something about every 2 hours. 

7:30 wheeled Eli into the OR 
9:00 all central & IV lines are in
11:33 Eli is doing well, they have not started the actual surgery, the heart has not arrived yet
12:00 they have made the first incision 
12:45 heart is on it's way from the donor hospital 
2:30 heart should be close and Eli will be going on bypass soon 
3:20 Eli is on bypass 
4:30 new heart is in, stitches being placed to put it all together, it's not beating yet but that will come soon.
5:25 ELI'S HEART IS BEATING!!!
7:15 still working on the pulmonary artery, will get an echo once all finished, place chest tubes and close up
10:05 still working on closing his chest 
10:42 TRANSPLANT COMPLETE! We will see Eli shortly. 

15 hours & 12 minutes. Surgery time. 

Thank you all for today. From the innermost being of our souls, god bless all of you for your thoughts and prayers and love and tears. We are WHOLE!

Thursday, November 7, 2013

New heart, same journey :)

We were told late Wednesday that Eli's Cath had been moved up to Thursday and last case. Then we got word he was bumped to first case. They day was long but looking back it all made sense. Shelley the transplant lady is what I call her, asked me to meet with her around 3:45 to go over some things. She came by and asked me to retrieve my transplant binder. As I turned around to grab my binder and sit, she was holding his listing letter. I couldn't keep my emotions in. I was ecstatic. We were listed. AGAIN! We finished our meeting and I started the drive back home to get Lucas. We ate, Played and caused havoc. Lucas and I were in bed. I was just telling him about baby brother and his events of today. Then the phone rang. I picked it up and looked at it and the display read Children’s. My heart skipped a beat and I knew immediately that this was the call. I answered and Dr Ryan, the transplant doc said, “Hello!  Mrs Kleckner, Eli's mom?" I rudely interrupted and TOLD HIM TO SHUT UP! Before he could even get it out! I knew. This was it! This was THE CALL! Then I did let him finish, "We have a heart for Eli!"

I felt fear, anticipation, hope, sorrow, anxiety and a whole range of emotions at once. We had about two hours to be at the hospital. My house was a complete, disorderly mess with laundry piled up, dishes in the sink and lucas in his pajamas. But all that would have to wait.

I called Danny, while he was at work. He couldn't believe it. It was so fast. Remind you, we just got our listing letter less than 5 hours ago! We made a few calls to family members and friends. Thirty minutes later, after I dropped Lucas off at Grandmas, we were in our cars and driving to Children’s for Eli's new heart. I didn't want to jinx myself by putting it on social media so I summoned everyone to keep hush until we got final word on the new heart. I wanted to tell everyone so badly, but I just couldn't. Not yet. Things for us always seemed to take a bad turn when we got good news. This news, I didn't wanna let go. I wanted to keep to myself but tell those most important to us first. 

I slept on and off during the night, drifting in and out of strange dreams. I couldn’t help but think about the donor family. Somewhere a family was saying good-bye to a special child. They had decided to donate their organs and were now waiting just like we were. But instead of waiting for new life, they were waiting to watch their child leave this life. The thought was heartbreaking. And the thought that in their moment of anguish and grief, they made a choice that would give Eli a chance at life touched me and I came to understand more wholly the meaning of words that most people only casually use, words such as sacrifice and charity.

At 6:30 AM Eli's nurse came in and told us it was time to start moving. Eli was due in the OR room to get prepped very soon. We walked down the hallway to let Eli go. Just like we had with his previous surgeries. We told him we would be there when he woke up and left him in the capable hands of Dr. Bryant and his team.

Eli's surgery went as well as they expected. They honestly thought he was going to give them some trouble but he was perfectly behaved and did very well. Once Childrens gets the call for a donor heart and it matches Eli's criteria, things begin to fall into place. One surgeon goes to harvest the organ by a jet plane while the other surgeon stays with Eli to prep him for the surgery. This was the longest part of the day. Once the organ was in route back things started very quickly. Eli did great. They weren't even done stitching his left side when the heart started beating. Blood flow got through and his new heart just took it fast. His old perfect broken heart was now removed and his new perfect heart was beating in its place.

We experienced a miracle or at least a series of miracles, that have given us a new heart for Eli. The days and weeks and months ahead seem a bit overwhelming. And I have to admit a part of me just wants Eli's old broken heart back. But that wasn’t the path Eli's heart defect would take him. Instead we are venturing into the realm of the broken heart made whole through organ donation. We have bright hope that his new heart will remain whole and strong for years to come.

The next few days are very critical for him. Working on weaning off meds and taking out tubes. They want to be as cautious as possible with Eli. He does not like to be pushed and he will fight back. We know this. He's very well tuned in with his wants and needs and will tell you about it. Next week will be huge in regards to getting him off the ventilator. He has been on it since 9/11. So he may not come off as quickly as they like. 

A lot of you have asked when I will get to hold him. When can he go home. When will things be normal for all of you again. This is a process. Just like anything else with Eli. He will tell us. 

I cannot hold Eli until his ventilator comes out. 

Eli will remain in the CICU for quite some time. A month sounds like a good number to throw at you for now. 

Once he's had biopsies to prove there is no rejection of the new heart, and he's stable with his new regimine. Things will slowly start to move towards getting him on the step down floor. He will spend some time here with Danny and myself and prepping us to be able to take care of him when they are ready to discharge. 

Once we have proven we can take care of Eli, and he is doing really well he will be discharged to Ronald McDonald for a month or two. Eli has frequent clinic visits and biopsies the first few months of this new stage that they don't want him venturing far until he's proven his new heart will work for him. For years. 

So we've got a goal to have Eli home by big brothers 3rd birthday. That is in March 2014. That will be in 4 months. I couldn't even imagine surprising Lucas with his little brother at home. My eyes fill up with tears as I type this. That picture, the one I've imagined for months on months, it's going to be one of a kind. 

Stay tuned. This new heart, same journey, will be one heck of a ride. 

Xoxo 

Friday, November 1, 2013

A heavy heart.

One thing I have learned on this journey with Eli through his congenital heart defect and his needing a heart transplant is that I couldn’t do this alone. I need support. I need to be reminded of how many people love Eli and wish the best for him. We have amazing family and friends but I have also found a certain sense of welcome and understanding in friends I have met here at the CICU. I am a member of a number of groups or pages that offer support to parents dealing with congenital heart defects, and life after heart transplant. Usually those groups offer nothing but the support and acceptance I need, but lately, I have noticed it's not enough. 

I worry a lot over the future and Eli's heart and catching something he can’t fight off. I’m an optimist, almost to a fault. Becoming a mom really put my optimism to the test, especially a mom to a son with heart problems. Not worrying about Eli and his future would be like expecting the sun not to shine or the grass not to grow. I will always worry.  

Tonight I feel a little less worried about how upside down my life is and focus on how great it will be. My heart weighs heavily for another CICU family. They will say goodbye to their daughter Keeley on Monday. Michelle and Matt & the boys have become great friends to us here at the hospital. I can only hope to have the strength they have if ever given their situation. 

I've found this passage and felt that it's fitting for the past few days I've had. 

"YOU CANT DO ANYTHING ABOUT THE LENGTH OF YOUR LIFE, BUT YOU CAN DO SOMETHING ABOUT THE WIDTH & DEPTH. "

xoxo