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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, January 18, 2015

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. 

16 comments:

The Snell Family said...

Crying, praying, and loving you all. There is still so much Gator boy has to do!

likeschocolate said...

I wished I lived closer! I want to see Mr. Gator, and so I am praying like there no ones business that Gator is getting a new heart. Is there anything besides prayer we can do for your family.

Julia Brown said...

Such stinky roads, but your faith will sustain you. So much love and so many prayers coming from here. Stay close to the Savior, and feel His love, too. And give that precious Gator boy an extra hug from the Browns. Love and prayers.

Nicole Barnett said...

Gator and your family are in our family's daily prayers!

Simply, Sarah said...

We've never met and I don't know how I found your blog. But, I have been following your family's story on here for a few months. I am so sorry for all you're going through, but I also want you to know that this stranger is praying for you all.

The Redhead said...

love and prayers sent your way each day. Love you guys..please let me know if we can do anything for you any of you!

Bethany said...

Love your cow names Gator!! Praying your perfect heart comes soon!!!

Anonymous said...

Praying for Gator and your whole family!
Love
Ann Marie & family

Petersen Palace said...

Naming cows sounds like a fabulous game! What is his favorite name for bonus baby Homer? :) Sweet Brynn, I know we've only chatted a handful of times, but know that you are in my thoughts and prayers often. And I put your names on the prayer roll. I hope you are somehow feeling peace in the storm. Sending love friend. <3

Paulsen said...

Oh Brinn this just breaks my heart. Your family has been through so much and you all are so brave. Our prayers go out to your family and we pray for strength and confort for you all. We love your family so much and it just hurts so much thinking of that brave little boy and all he has been through. Porter misses him a lot and thinks so much of his friend Gator...please tell him hi from us and Porter. We love you guys..

Anonymous said...

I realize that the LVAD sounds scary, but working in a very specialized children's hospital that utitilizes multiple types of vad's, I have seen them make an incredible difference in the lives of the children and their families. I realize nothing is without risk, but I would consider looking into this option a little bit more. I have seen some of my very, very fragile children come back from the brink with these machines, stabilize, and GO HOME on the machine while they wait for a heart. One of our very highly sensitized antibody kids waited on one of these machines at home where he thrived before getting his very special new heart.

I realize that none of these decisions are easy or come without great risks. Know that you and your family and loved and supported no matter what you choose to do!

Anonymous said...

I hope Gator gets a heart soon.

Lauren M said...

Praying for your sweet boy

jackie said...

Gator picked some great names!!

Praying for sweet Gator and his beautiful family.

Hoping there is a miracle coming your way!!

Mindurs said...

If you ever decide to move Gators medical care the Los Angeles area you and your family are more than welcome to stay with the Francis family. I can watch the girlies while you are away. Just so you are not alone if you want to come to a bigger metropolis area. We love the Homer family!

Jen Reeves said...

We love talking with Gator when we can, he makes us laugh every time we do! We support the decisions you are making!