Update #4

Update #3

Alex is going on the bypass machine now. This machine takes over and keeps him alive while his old heart is removed. 

Update #2

Just got our first call. The nurse said that Gator has done very well.. It is all timing right now. We wait patiently for things to be ready. 

At 10:30 the nurse who was with Alex during his very first open heart came to update us saying that they had made the incision and were carefully trying to disect  Alex's old heart away from the scar tissue his body has made from his previous surgeries. A difficult job. But that Alex was tolerating everything well. 

UNT 

Update #1

Pre op and preparations... This morning Alex had plasmapherisis to aid in getting rid of antibodies. Some of the preliminary testing showed that our donor and Alex were a perfect match. Then we found out he had one specific antibody that we think has been resolved with plasmapherisis. What an absolute miracle and wise team. He went back to the OR around 7:35 and his surgery should be around 9-12 hours. We have been given a pager so we can be updated.. It will be a long long night. 

UNT (until next time) 

A day to remember.

It has been an emotional couple of hours. We wanted to process every emotion, spend time, and really just be present for our boy. Blogging and posting to social media wasn't at the tip top of our list. But we know you forgive us. 

We have received the wonderful news that there is a donor heart available for Alex. While our joy is incredible/undescribable, our thoughts are also with our donor family and their loss. We have seen great prayer in our behalf and we ask you at this time to send our donor family prayers of comfort, gratitude, and love. Alex is excited and cautiously optimistic at the same time. He was mostly asleep when we let him know the news and he said "OK".. A sweet smile crossed his face. 

His faith has never faltered, his hope has always been, to get better and get back home. We are so thankful for this amazing opportunity. We are humbled that as we put all our faith in the Father's will, no matter what would have happened, we have this opportunity. 

Now a few requests. 

We are keenly aware of how many people love Alex. While we are going through these couple of days we may not be able to respond to you all. Know that we are so grateful for your continued prayers and good vibes. Also, know that we will update when we can and as you are waiting to hear how things are going that feeling is multiplied 1000X for us. If you have questions please call Grandma Clawson for updates for Brynn's side, for Jeff's side please call Grandma and Papa Homer. The girls are being well taken care of and are so excited for this special day. Our beautiful Ryleigh has fasted for her brother. She has kept this family secret in her heart as difficult as it was. She is amazing. Eden can't wait to play with her big brother again and May asks all the time if Gator still at hoppsittal. 

Until we write again.. 

So much to say..

There is so much to catch up on. So many amazing things and some very difficult things. Over the past couple of weeks we have been trying to keep our heads above water. The hardest thing for me and I believe for Jeff is how we feel split between so many places. With lots of help we have made it work somehow. A couple of weeks ago we had a care conference to help us with a long term plan for Alex's care. The roads were all bleak. Road #1 was to move Alex to another highly populated state. Sheer numbers would be the purpose.. The greater the population the greater the chance of getting a heart offer. While this seems so logical for some, it doesn't work for us. With two medically fragile kids, a pregnant mommy, a daddy who owns his own business and is the bishop, and being away from support from family and friends things didn't look good on this road. Road #2, the cardiologist have been discussing with cardiothorasic surgery about doing an L-VAD or Left Ventrical Assist Device.. Alex would be the first single Ventrical patient to receive this device. They would not be able to place the internal device because Alex's body is too small. That leaves two other flavors. One flavor would leave Alex nearly immobile while he waited, the other would let him be more mobile. They were unsure which flavor would be placed until they were actually ready for insertion. Plus also, they would be introducing blood products. These products would most likely increase his antibodies. He is already highly sensitive. This road would prolong his waiting time but close the door to offer acceptance. Road #3 is hospice care at home, he could stay on his medicines but would be taken off the transplant list because chances of lines going bad and medication complication rises drastically when we leave the hospital. We could also take him home, then remove the medications until his "time". This would be hours because we know at this point his medications are sustaining him right now. Road #4 is to stay here in the hospital closely monitored in the ICU. Everyone will make sure he is sustained for as long as possible. The down side to this is the medicine is not going to sustain him for very long. Two big gun heart meds, Dobutimine and Milrinone can't keep him with us for very long. Our hope is at very best 90 days. How short that seems. What really dumb roads. We had our own family council with Gator. We found out how much he understands and what it will mean for him on each road. He has a choice because he will ultimately decide how hard he is willing to fight to stay here. He decided that staying listed and even though he misses his sisters and friends terribly, he has hope that a healthy heart will come. 

Each day is a blessing. Each and every visitor is unsure if it will be their last visit, but they are taking time to be here as much for us as for him. In the mean time. We have had an amazing couple of weeks. With uncertainty of time and how well Gator would be feeling, Ryan, Alisha, Grace, and Gigi flew in. They spent a week hanging out with Gator and the rest of us. We also got to see baby Gigi be blessed by her father. The cousins were so fun to spend time with. Uncle Pickles (Ryan) and Gator built an enormous Lego truck. 

We have some fun friends in Idaho who raise cattle. They wanted to do something fun for Gator to make him smile. They have a bunch of new baby calves coming and Gator was put to the task of naming some of them. The first boy calf will be named Gator. Then he needed to choose three girl names.. He had a blast asking all the nurses and doctors opinions.. Writing them down and deciding on the three top faves. The staff all thought it was hilarious that he got to name baby cows. He ended up with these three 

1. Heartlee 

2. Addy 

3.  Mariah-moo

 He can't wait to meet these baby girls in real life. 

Alex PICC went bad. We brought the girls to see their brother. Worried this would be our last goodbyes. Alex had to have it replaced with very little sedation because the risk of sedatives stopping  his heart is extremely high. We stayed together and laughed and played like when we are home. He was very scared, Miss Jen was able to be right with him. I am so thankful she could be with him when I could not. She distracted him and soothed his worries. The procedure took just a few minutes. Jeff and I went to grab some lunch. We just sat down, had two bites when the Doctor found us and told us he did amazing. The team was able to thread the new PICC line over the old one and everything was in order.  He was a little sleepy but not enough he couldn't have two 'Cup of cheese Ramon'.

At home our girls have been cared for and meals have been brought. We are immensely blessed. 

Miss MayLee is 2

It has been a great day. Our new church time is 1 which means our birthday girl missed her nap. But she had a blast at nursery with Sister T and Sister H!!! What amazing Sisters to watch over the littlest spirits of our ward/church family. I just know if the Savior came to our church He would want to start in nursery. When Jeff got up for meetings May woke up too. He said "happy birthday" and she replied "open presents?" There is no sliding one past this little girl. We got her a giant cupcake (no candle/open flame for this oxygen wearing toddler). For gifts she got a pink poodle alive, and her new bedding for her big girl bed. From Auntie Lisha, Uncle Pickles and the girls, she got a Barbie swing set. Our home teachers the Deheers brought her a princess reader(like an iPad for toddlers) that reads books. She is so happy.. She got to FaceTime Gator who sang her the birthday song. And she crashed asleep at 7:15... 

The word is... After trying the lower doses of dobutamine Gators creatinine went up. This number measures if his liver and kidneys are happy. Going up is bad.. That means they are working too hard. So today they moved his dose back to 5. When Carolyn our nurse asked him how he was feeling after the increase he said "so so so so (for fifteen seconds) much better".

We sure love Carolyn.. We found out we are related back a couple of generations. It is another blessing to have members of the staff who take amazing care of us.