Pages

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, May 29, 2014

Whew!!

Just in case there are a few of you up waiting to hear... 
You can breath:) 
Alex made it out of surgery. He is awake and being watched again in the CICU. He finally has had something to quench his thirst and is resting. The prayers offered were heard and we thank you. Today as he was fussing and there wasn't anything else left for me to say or do to help him (that is very frustrating, by the way) I asked him if maybe we should say a prayer. With all the faith a very sad 7 year old could muster up he said we should. We thanked Heavenly Father for this day together even if it was hard, then we asked if he could help us not think about being hungry or thirsty. That was it. Gratitude for being together and comfort. Alex layed back after and decided he was pretty tired. He slept until they were wheeling him down the hall. 
They were able to find the bleed, take out the broviac, stitch up the vein and save the vein too. It would have been even harder to lose the vein. He looks pretty beat up, on account that the bruising went into the muscle. And he is sore in his neck where the exploratory incision was made. With a good night under him he will feel better. We all will. 


Rough day

About 2:45 am we got a phone call that Gator was having a hard time with bleeding. His proceedure had gone well and he was doing great when we left him for the first time alone for the night. He was even out of ICU and on the recovery floor.  
This was certainly a turn we hadn't seen. He continued all day with yucky gushing blood. We tried every trick and it came down to taking him back to the OR. We are hoping this will take care of everything.. We haven't heard yet. 
Luckily we have had some fun distractions. Miss Bobbi from school came and brought him Foxy Loxy!! Miss Hollie and Miss Natasha came with a huge bag of fun things. He is so excited. He is in good spirits other than he is hungry and thirsty.. Very thirsty.. And tired from lack of blood. 
* I have pictures but I don't think it's appropriate to post them.. 

I do have a picture of a ceiling tile of a little girl we love. 


Wednesday, May 28, 2014

Update


Alex had his follow up appointment today.  The doctors have been calling frequently to check in on him. They also asked that we were prepared with a bag packed JIC. With the holiday and the distractions of life we had a very enjoyable weekend. Ry started back to school this morning and she was thrilled to go. She even had her outfit planned and her hair do picked out. I got everyone to their "helper" and we went up. After being looked at and a serious heart to heart, Alex was admitted today. The doctors believe that even though he looks good on the outside, like, he engages in conversation, is happy, and silly..... His insides are very very sick. We needed to start him on a medicine called milranone. This medicine improves his function, but it doesn't help his tricuspid regurgitation. So it was a true conundrum about what should be done. Believing that this is a better step than a crisis, he got a room in the CICU. Another good thing,  his white blood count is up. He responded to the medicine that was given. Tomorrow morning he is getting a special line called a Broviac. Then his team will determine if his dosage is right for coming home. Or, if he needs to stay in the hospital till his healthy heart gets here. He is also using oxygen to help his body relax. Today he ate one can of tuna, three bowls of his beloved Ramen noodles, two cups of hospital pebble ice, two slushies, and one bag of Doritos. He loves room service! We also built Legos together, Miss Jen came in from child life and we did medical play to help him understand what would be happening in the next couple of days. He seems to be in good spirits.. 







Sunday, May 25, 2014

Home bound primary

Grandma came to be with Alex while we went to church. She pretty much rocks. And because he has the greatest primary teachers ever, this is how he did his classes today.. The out pouring of love and compassion from everyone is overwhelming.. Thank you all so much. 

All dressed for church, except no stuffy socks and shoes:) 





Saturday, May 24, 2014

Masking up in style

Since we have to wear a mask while out, we decided to do it Lego style.. 
And because we want to show those germs who is boss..


We got this!! 

Friday, May 23, 2014

stand by helplessly and watch

Yesterday was busy and it was a heart-full day. So many things to be so happy about. But some difficult stuff too. The girls are winding down in dance, the year is nearly over. The recital is next month and we had pictures. They are excited to perform and get their trophies. Eden will performing two dances and Ry will be in three. But we had to be on our A-game yesterday because we had HTx clinic in the morning and we needed to be ready for pictures by 2. That seems like forever away but when clinic is at 10:30 we need to leave by 9:30 to be on time. We had to figure out how to get Eden's hair ready for dance pictures without the curling wand so I used rollers. She was slightly mortified to be out and about in her rollers. She felt somewhat better when she saw me pack up the makeup she would get to wear. She is always tickled to wear makeup, especially mascara. Clinic was rough.... The kids were not terribly crazy. We have been nutso before and I felt like they knew better today. Alex actually did most of the talking. They asked him the questions. It was good to see he is listening to his body and is able to vocalize how he feels. It also means he can tell him things and I can tell them observations, a much better picture. We needed an Echo to help us see what his insides were doing. The leak in his tricuspid has gone from moderate leakage to severe. This is a huge thing. It is at its max... His function looks the same. That is neither good nor bad because his function isn't good. That is what the echo showed us. Then we ran over for an anti-Xa and labs..... I was glad to have the amazing Miss Jen on my team for playing with the girls. Child Life is an amazing resource and helps us so much. We had to do two pokes to get labs this time. He didn't even cry until he they needed to search a little and that hurts. On the second poke he was already weepy so he fussed. He made it through and got to pick a prize so it was well worth it. After that we flew to dance pictures. Eden was thrilled with her bouncy hair and lovely mascara.. And LIPS!!! How could I forget the lips? She looked darling. Then home to get Ry ready and hair curled... While curling away the phone rang. The hospital had his results... Not awesome:( Alex is wearing down... His body for some reason isn't making enough white blood cells. The normal level is around 5-15 and Alex's number was 2.2... Even more concerning was his ANC.. Anything below .5 is worrisome his number is .3.... All of this means he can't fight off infections and illness. He can't go off to school anymore and he can't go to church. We can't go places were there will be big crowds and he needs to wear a mask when out and about... All of this listing/transplant business just got Fo REALS... Up until now, besides the treatments to lower his antibodies and the extra visits to see the doctor, we haven't really changed. We haven't had restrictions, school was still an option and church... With this change it means a new medication that is another injection. The good news it's only for 5 days. And some other tweaking of meds.... 
We are going to make the best of it. We go back on Tuesday for another echo and more labs. Adjusting is the name of the game. Pharmacy brought out his new meds and asked if I wanted a nurse to come show me how to administer it. I giggled a little and said I probably got it, but thanks. I made adjustments to his spread sheet and set alarms on my phone to help me remember what to give him. I feel organized. Now if I could just move past the haze of fear that threatens like storm clouds coming over the copper mine near our home. I know this is part of it. I understand that he will decline, but it is hard to be the bystander. Poor friends who wish there was something they could do. There isnt, except to continue to rely on our faith that this is His plan. When and if you question God, know that I don't feel like any of our trials are punishments for being unfaithful, rather, it is a way to gain more faith, more compassion, more strength to endure and overcome. 
If you think of it as a bike analogy... Daddy loves these..... 
When planning for a very big ride, take for instance Latoja (one of Jeff's goals) Not only must you prepare by doing tons of practicing, you must watch your weight, get the right kind of equipment, make strategies for someone to be your nutrition stops, ride in smaller rides that will prepare and strengthen you as a rider, and so much more. 
Our ultimate goal is to be worthy to be with God again. We prepare on earth by practicing being humble and faithful, watch how we react to things that could damage our spirit,  get the right kind of equipment for our spirits like prayer, fasting, and scripture study. Make strategies for nutrion of our testimony by attending church and partaking of the sacrament to renew the promises we made at baptism. Last, we must ride out and endure trials. It's part of it... Easy??? Naaaah, that is why your prayers have meant so much. Thank you! 
She waits. 

All curled up.

Labs.. At least they have video games.

My three little ladies..



Tuesday, May 20, 2014

Busy Saturday


The grown ups around this place got to enjoy a very full and busy Saturday. It was RS conference for me that morning. Sister Reeves spoke.. Her message was so uplifting. She helped me see that I am not loved any less by The Lord when I am "away" from the gospel, but rather Father In Heaven is waiting patiently for all of our return. He does not abandon us. It was awesome. 
Jeff had a bike ride.. It was supposed to be another ride but that got cancelled two days before the race. So he quickly signed up for the Iron Will. A metric ride of 60-ish miles. He really enjoyed it. 
Prep...
We are so proud of him. Bike riding makes us happy because it makes him so happy!

These women are my heart mommas.. All of the women have been affected by CHD's in some way. This isn't even all of my peeps. I am so thankful for this group for so many reasons. They cheer when someone succeeds and cry and worry over others too. 

This special group of ladies let me be in this picture. All of them have been part of the transplant world. I just want to sit at their feet and pick their brains. 

This gal is my wonderful friend Brytten, her boy is also waiting for a new heart. I can't think of a better person to have with me on our journey. 

Hillary Weeks spoke and sang. I cried ugly girl status. Her messages were beautiful and perfectly fitting. 
I needed a day like this.






Dentist

Ry ended up needing some cavities filled.. The night before the dentist appointment she asked me to check her tooth to see how wiggly it was. I grabbed some paper towel and had my finger barely wrapped around that sucker when it popped right out. She was super excited to collect money from the tooth fairy that night. About 2:45 A.M. I heard a noise down stairs and went to check it out. I must have scared off the fairy because she hadn't come yet, and Gator was up to use the potty and Ry was checking under her pillow. But when she came up that morning her money was on the table. She even got to keep her tooth. 
He had to watch a movie while we waited for his sister.. But I thought it was funny that he decided to sit on the floor instead of the couches. 

Tuesday, May 13, 2014

Off track sooooo far

Off track hasn't been bad, the kids love sleeping in. We have been able to get ice cream and enjoy each other.. We also got to go to the Zoo with friends!! Thank you friends. 

Every animal is a doggie to Miss MayLee! What a hoot. We even got to see the bird show, she would squeal and say doggie doggie!! Haha! I think I got an incredible work out because Gator got tired of walking and so I was pushing May + O's, with Eden on the stand, and Alex sitting on the sit.. Plus, we had our mini cooler with lunch. Worth it for the memories. 


Legos

They are cool!! Really cool!! Oh and AWESOME! 




Bees game 05/09/14

Our heart group got tickets to the Bees game and it was soooo much fun. Gator was so excited because his Coach pitch rec team was part of the Bees Jr. Which meant he had a hat and shirt to wear to the game. He wanted to catch foul ball too. He loved visiting with friends and hanging out. He never did catch the foul ball, but our friend Mimi mentioned to the opposing team that he really wanted to catch a ball and he was waiting for a new heart and those sweet men made it happen. 
Getting ready..
Here it comes, he's got his foam finger ready.
Score!!!!
Yeah it was THAT cool. 


This sweet friend is Landon "Lion", cool that we have a Lion and a Gator... He made this special bear for Gator. The very cool blue bear has slept with Gator ever since he came home with him. The neat thing about Landon is on the day of the Bees game it was Landon's heartaversary... He is a transplant survivor.  Not only is he a survivor, but he is a pioneer here in Utah, his heart blood type did not match his body blood type. He is amazing, and proof obsticals can be overcome. 

Wednesday, May 7, 2014

3's

#1. Wanna know what stinks?? (Besides skunks and fluffs) having a bike ride cancelled that you were really looking forward to. I know Jeff won't be disappointed long because he knows it's trivial... But, it was still a bummer.. Luckily, we have it mostly resolved and he is going to rock a new one the next week, thanks to my little sisters help... Then the Ghost ride 100 is still taking place, it's just been moved to August. I hate to even see Jeff disappointed. He posted something about it on FB, but left it kind of a open statement.. It made his friends sort of panic. So in the future he will be stating why he is disappointed as not to cause alarm:) 

#2. We got the results back. Alex's body did not respond to IVIG. He is still 85% sensitized. As brick-wall-ish as this feels, there are so many things that can be worse... It is, what it is. I am always pretty frustrated on bad news days. With a little sleep I see a little clearer and can make heads and tails of information. This means that our chances of matching a heart to Alex will be pretty slim. It means watching him deteriorate. It means we have fewer options. It doesn't mean we give up hope. It doesn't mean we stop living each day like we are normal people. When Alex prays he asks that, Teagan and He get new hearts soon. He prays for friends that are sick. Everyday is a gift. 
His new medicine did improve his liver count. See, some good in there amongst the ick.

#3.   I went to follow up and it looks like my issue has stumped my doctor.. Ha! He hasn't ever seen what has happened to me, happen before. He isn't a young guy either. We are all about crazy at our house. So I have to take it easy still. I can't believe these words as I am typing them but.... I miss working out and would really like to be better already... You don't appreciate your body until something isn't working full speed. I get to go back in ten days. In the mean time I am on a mission to research and get myself better. Luckily I have some great friends who have been through this too and I am asking them a zillion questions. 

That's our three... Glad that's over, now on to good:)

Monday, May 5, 2014

Happy Quatro de Mayo

It was a busy and full weekend. Friday my kids tracked off!! Hurray for pretending like this is part of our summer break. 
Saturday our friends had a huge yard sale (her first ever) and did it in honor of Alex. We decided to go over for a bit and take the helpers a thank you and some waters. It was amazing to see our community come together, we are continually blessed. The kids came away with treasures. My little Eden got two baby dolls which she has cared for each day since. Twins is in her future. Ry did the happy dance when she scored a hair crimper for .25 I think she heard angels signing chorus!! Alex found a bike that you hook up to the tv, which we will be putting batteries in and giving a go tomorrow... 


We also wanted to support Sierra Newbold's family. We went over to the school where we had slushies and got B.A.C.A. temporary tattoos. 
Then this momma needed a rest. Still healing a bit. 
Daddy had been on a training ride (63 miles) and we were super excited to see him and watch him plant trees in our back yard.
 Then we cheered super loud for all our friends on the Lacross team. They won their game! 




I think Gator was off playing some where because I never got a photo of him. 

Today we celebrated Star Wars day!! May the 4th be with you! And we also had yummy Latin food... Instead of tomorrow. Eden was my helper in the kitchen while making homemade salsa, cilantro lime rice, and a slaw that is really Asian, but I needed to use the cabbage up. 
Busy, full and fantastic... 
We have lots coming up this week... I only hope to keep these off trackers happy! 







Saturday, May 3, 2014

Soaking it in

Sometimes I feel extremely guilty for not getting the million and one things done that I could potentially get done during a nap. But, there are not very many naps to be had and I am soaking it in while I can. 
She slept for many glorious hours. I loved every minute of it.. 

There are truly angels on earth. Most of them I believe, are part of my life. We have been showered by loving gestures. 
Another example: Recently we recieved a beautiful card in a sweet handmade envelope. The money was enough to cover all the new meds Gator just started. It is amazing to me how things have worked out. 

I wish everyone could feel this kind of love. I have a plan to pay it forward. It is going to take a whole lifetime to do so, but I am going to... 


Thursday, May 1, 2014

Just laugh

I had to have a little surgery yesterday. It needed to be done in a place that would make us blush if we talked about it. I feel better today and will heal just fine. Just a silly tune up. 

I look frighting. They asked me not to wear make up or jewelry... It makes me look like a kid even more with my giant zit and braces.. 

I had the best hospital buddy ever. I lucked out with this guy! He managed the troupes, helped me, planted trees and was a rock star daddy! Plus he laughed at me for saying crazy things under anesthesia. You will have to ask him! 

Next time I want a mani. Here's hoping there is no next time. 

Me and May snuggling. Eden and May got to go to the zoo with the big Eden, Jordyn and Abby.. Gator was having IVIG hang over. Poor baby boy.. A migraine he had to sleep off. He went to Papa's house.. He does great the day of IVIG. Day 2 is usually tummy troubles day. Day 3 is migraine day... Today day 4 is hopefully better. He went to school so I think he is better. Still waiting to hear if he is responding to treatment. I think if he isn't responding we will stop IVIG. I got my BP cuff and finger pulse ox.. I am happy to have more tools to help keep them happy.