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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.

Thursday, January 29, 2015

Update #8

I can hear his voice!!! Alex's village is amazing.. The nurses run their fanny off making sure every need is managed, doctors fret and worry over him, staff such as techs and housekeeping make sure he is super comfortable.. Every single person works tirelessly and with compassion and gentleness. Yesterday we started to remove lines and tubes, chest tubes, foley cath, pherisis catheters. Today Alex was successfully extubated. He is on high flow but holding his own. It's a much better place than last time. He has been able to talk to me. Asking for Chapstick for his super dry lips, his favorite stuffed dog Bensy, and little pink swabs with water. He is still pretty tired but is happy to have more mobility. We are all doing great as well.. Thank you all for the continued prayers and every other thing that has been done in our behalf.. 

Tuesday, January 27, 2015

Update #7

Wow has it really been so many days.. It all blurs together. It has been a lot rougher than I ever could imagine. Alex was very very sick and his body wanted his new heart and isn't rejecting it so far, it's just that it was so much of a wonderful thing all at once. Like too much ice cream can give you a belly ache. On Saturday we tried to extubate, which was successful for a time, then he needed high flow and then Bipap and then once again Alex was placed on the ventilator. Our fear was that he was having acute rejection. Alex went down to the cath lab and underwent a series of tests including a biopsy which would help us understand what was going on. The surgeon came in and was very sad to report that he didn't know how Alex was still alive with the pressure he was experiencing in his heart. He had never seen a patient like this before. Later that night the biopsy showed zero rejection.we were really baffled as to why this all was happening. The conclusion of most is that his body was accepting the new heart but had been so sick before hand that it was adjusting very slowly. That because he was so sick before he had adapted to "making it work". So he was still fighting in a less than ideal circumstance. I went from the happiest happy to a very low low time. Over these past couple of days we have watched him improve. Pressures have gone down and his body finally seems to be celebrating with the rest of us. And maybe his body grieved the loss of his heart that had worked so hard to sustain him. And his new heart grieved the loss of its first home. Both needed time. Baby steps. Alex is still intubated and very much asleep. He responds to daddies voice the most. 
He did open his eyes and nod when I told him about his baby brother. We took Ry with us this morning. She is such an amazing big sister. She wanted to be one of the first to know. We also saw a beautiful lip and nose(no cleft) healthy bladder and kidneys, spine looked great and a glorious four chamber heart! I will follow up with MFM to schedule a fetal echo. Today we feel blessed beyond measure! 

Saturday, January 24, 2015

Recovery day 2

What a great day! Alex is doing well. You don't think about urine and bowel sounds being a super stellar thing until you realize how a finely made human body machine needs a way to get rid of waste and then you cheer when there is output!!! 
He had pherisis today and we plan on taking out his breathing tube.. We hate to rush anything, but he wants that darn thing out.. We will let you know when it comes out! 

Friday, January 23, 2015

First glimpse

Here is a glimpse of our boy. 
The eyelashes on this little guy are enviable.

Update #6

He is doing wonderful! He has stayed asleep in order to aid in his recovery, but we are just now talking about letting him wake up a little. He received his second plasmapherisis, finished about an hour ago. I would like to add that we have everyday heroes from those who donate to the blood bank. This couldn't have happened with out those amazing donors too. 
I bawled when I saw this!!! 
The white ones say "Gator's heart day" !!!
I couldn't be more proud to be part of such an amazing school and neighborhood! 

Some of the other small things we are doing. We need to slowly wake up his tummy, so he will be getting some formula through an NG tube.. He also had an Echo to see if everything is still working well. Good news so far. 

UNT


Our Love

We know a lot of you love Gator.. We also know everyone is probably thinking this anyway, however they have asked and I obey! For the next week Alex can't have visitors. This will give him a big open time to get feeling amazing. He will also be receiving the plasmapherisis over the next couple of days and this is a big machine that will be doing an important job. He has also started on his immune suppression meds.. These meds are life saving but come with a caution. He can get sick.. Another reason... The less amount of exposure the better. 
Love you all.
UNT

Update #5

If there are words to describe my feelings, my brain can't recall them. We feel sort of like we've been given the world. Thank you everyone. Our little boy was very very sick, now his new healthy heart is beating  happy in his chest. I hope that our donor's family can feel our gratitude. While there is nothing that I could do to ease their grief, I would hope that they will know how much I will do to take care of my son and to honor and respect them. I don't take this responsibility lightly at all.

 We have been able to see Alex. He looks all pink and even better then I imagine. His tummy is less swollen, it could get bigger because he hasn't really gotten out of the post surgery honey moon stage. His liver that we have been so worried about... Yeah, it's like it's done its own happy dance and is already feeling and looking better.

 Now the critical waiting post op hours. He will have plasmapherisis again today to keep those pesky antibodies at bay. Rest rest rest and work on breathing on his own. Big jobs. I on the other hand am not cut out to be a surgeon.. I can't stay awake this many hours without side effects. While seeing Alex I felt the room spinning and couldn't suck in enough air and finally had to sit down before I ended up on the ground, hahahaha. We are all trying to get a little more rest. If it were just for me I would feel guilty not being right by Alex, but his baby brother or sister really needs me to take care too. And I really need Jeff for all of us. 
UNT 

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. 

Thursday, January 22, 2015

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.. 

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. 

Sunday, January 4, 2015

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. 




Sledding

Wow!! I took the girls plus Gracie sledding.. The little girls would rather just go down the slides.. They took a long sled down the hill on the second run the sled overturned, dumping both girls out. Lucky for us their helmets took most of the blow. MayLee bloodied her lip and bruised her cheek and hurt her fingers wee (really) bad. Eden got snow in her eye. That was it! Done! 
Ry and Grace went down tons of times on our saucers until a little girl ran into the path of Ry's and she couldn't stop and plowed into her and shattered the saucer. When I said to the older girls last run Grace hit a bump at the bottom and shattered her saucer. We made sure to pick up all the pieces. Crazy that it was so cold the saucers were that fragile.. 


Finally... An update

This has been a very eventful week. Alex has had so many wonderful visitors, thank you for taking the time to see us. Uncle Pickles and Auntie Lisha and the girls flew all the way here, and Uncle Marc and Arli came, Grandma and Grandpa Great Groesbeck and heart buddy-cousin Chels, our sweet friends and Grandma's and Papa's and Auntie Pres, all taking turns watching kids or staying with Gator. Our "village" is the best. We couldn't do it without you all. 
Let's start with the girls because they have been massive troupers in all things.
Ry has been adjusting to the idea of bonus baby, I am so glad. It is not fun to have her so disappointed. She has been playing with friends and cousins and staying happy and lifting us all in the mean time. She helps were she can and does her best to be easy going. 
(Photo courtesy of Eden) 
Eden is spunky and so funny, she loved New Years for the games and that she stayed up past her bed time. She fell asleep snuggled up to me at 9:45 PM because she is a party animal. 

MayLee is doing well too. She has become ultra clingy, does that surprise anyone too much? She turns two tomorrow. Time has flown by so quickly. She is so smart to me, I think it's because she is so articulate and her vocabulary is so extensive. We plan on moving her into Eden's room.. And to begin potty training. She is excited about using the potty and that makes me so happy. 


And Gator boy, we have been as low as 3 on his dobutamine. He just couldn't tolerate it. His happy is probably 4. I guess this medication is not widely used in conjunction with Milrinone because we had a nurse who has been here seven years and never used it before Gator. But it's helping. With that being said, he needs to stay in the ICU until nurses on the recovery floor can be trained. We moved from a room with no windows to a room with two big beautiful windows.. He takes walks around the unit staying far away from the sickies and had his first guitar lesson. He built an amazing Lego tractor trailer. His spirits are good. Thank all so much for the strength you send our way. For all the kind gestures and mostly for the prayers.