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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.

Tuesday, December 30, 2014

Through the window

I know there are many who are praying for us and wondering what exactly is going on. At first I was still processing everything and writing it out was pretty tough business. So understand this post might be a bit choppy as I try to explain. Last week we had a bit of a rough week, Gator was feeling nauseous almost every day and his numbers were off some. Christmas Eve was a little tricky because his PICC line wouldn't draw back. We have been trying to get his antiquags to be therapeutic and they have been up and down.. We worked it out thanks to amazing nurses who do a fantastic job. Christmas morning was amazing due to sweet Santas who took amazing care of us. I will be forever grateful for their generousity. The kids were so excited. When we got ready to go to brunch Gator got very sick... Eeeeeewww.. It was a very rapid decline after that. Yesterday at clinic we explained how he was feeling. The news of how bad the situation is was rough. We are trying a few things that aren't guaranteed to give us more time. Time is precious because we are running out. 
Our other option was to bring him home. He would be so uncomfortable as he retained more and more fluid until he wasn't able to breathe any more. 
We are kind of limited on diuretics because his kidneys and liver aren't happy right now either. 
Grasping.... Trying anything... 
It's hard to see your babies worry about their brother and he be in pain and we are helpless to ease it all. 
We decided to admit and try another big heart med, dobutamine. This has officially earned him a room at his second home at PCH. He could stay in the ICU or we could move to the recovery floor if he becomes stable enough. 
We also got approved by our insurance to send his PRA's to Stanford. More brains working on his antibodies. 
Yesterday once he started the dobutamine within fifteen minutes he was feeling better. Today we tried to lower it down a little. He isn't doing great on the lower dose so we are hoping to go back up tomorrow. His spirits are good. We are thankful for each and every prayer, message, text, email. Sorry if we don't respond right away. Know that we love you! 

Monday, December 22, 2014

Hanging out

We got this awesome gingerbread train from our neighbors. Ry was super meticulous about doing hers, Gator wanted to fill his with candy, Eden and May wanted to eat all the candy... 
They turned out great for five minutes.. I am a novice gingerbread maker and hot glued the pieces together because frosting was not holding.. That didn't even hold on the little girls train car.. 








This morning at the BCOD (not just the crack of dawn, but the bum crack of dawn) we came up to the hospital for clinic. With Christmas on our regular clinic day we got to come on a Monday. Everything is stable. That is great, just a happy to be home and doing good time.. His antibodies have dropped again and we will be scheduling his Bortisamib treatments again.. It seemed odd today as I made clinic schedule into February because he was listed on February 7th.. Crazy to have waited so long. 
We bumped into Paul Cardall last week and he reassured my heart that sometimes you just have to surrender everything. It will come when we least expect it. 








Thursday, December 18, 2014

Today and all the other days..


Jeff- he is healing up nicely from his 'home lighting' experience. It is very hard to be in carpentry and not be able to use your hands the way you are used to. 
Brynn- visited the genetics counselor. Left feeling more secure about this pregnancy. The baby is doing great so far and I am finally starting to feel a little less yucky.. Thank you second trimester.
I still think it's a boy.. Jeff thinks it's a girl. We will get to find out in about five weeks. 
Ryleigh- is amazing! She is doing so well in school. I just love this girl. 
Alex- has had some very good weeks. Both last week and this week he is holding stable.. In fact his antibodies dropped again. One of his docs told us today that Stanford does some special testing that they would like to bring to PCH and Alex would be a perfect patient to begin with. Hopefully we can get some more clues to his complex case. Although I haven't met a kid that needs a transplant that isn't a complex case. Speaking of other kids.. Teagan, who is also stable right now. Is such an awesome friend and he and Gator talked with Hope Woodside about organ donation. Their story should air on Christmas night at 9 o'clock. Teagan's mom Brytten is amazing and helped a ton because the interview was while Gator was in the ICU.. So she was our voice! 
Eden- this super star just had her Christmas program for preschool! She did awesome! 
My favorite song she did was S A N T A.. 
Gator facetimed into the program from home. So did grandma and grandpa Clawson.. Grandma Homer made it in person and Papa Homer stayed with the boy. She got Sams Club slushy and pretzels as her post program treats. Yummy! 
MayLee May- I ask her how old she is and she says 4.. She is so full of it for a not even 2 year old. She even decided to wear panties and made it to the potty two times.. It was short lived. Dang.. 
Every day is an adventure:) 
The awesome sister missionaries at our Christmas party! 




Wednesday, December 10, 2014

Thoughts as we move forward

Slowly and surely... But forward.. 

I was struck by the generousity of the family that offered to be our first donor. They are just as important to me as a donor that would have been successful, and I wanted the family to know that. I wanted them to know how many prayed for them and sent words of comfort during an incredibly difficult time. 
I want them to know because I have been on a couple sides of this donor business.
Last year my little niece Jenevee June died.. She was just a tiny baby, only four months old. Not nearly long enough to love on her. I was there the day her little spirit left her earthly body. My brother and sister decided that she would be a donor. The choice that they made seemed so incredible during their grief. I find comfort knowing she helped to make the life of another tiny baby better. Now that we are facing needing a donor. Her gift is even more precious. 
 
I wrote our donor family this letter. I am sharing it because I want every family who has decided to be a donor to know my gratitude as well.. 

Dearest Donor Family,
On a Tuesaday night the most amazing thing happened. You said YES to organ donation.
You have changed our lives forever and I want you to know that your thoughtfulness, your generosity, and your love at a time of extreme difficulty and grief will forever connect us. We don't know you, we don't know anything about your situation (or you ours), we don't even know if our angel is a boy or a girl. What we do know is that they are our Hero. 
I am so sorry that that probably doesn't give any relief to your broken hearts. I am sorry that you had to do things that nobody ever plans for for a child. I am so sorry you had to even think about being a donor, but you did. You thought of someone else, you thought of us. How amazing you are.
Did you know that our kids were a perfect match? You have given us such hope when we had almost nothing left. You have renewed our faith. 
Thank you will never seem like enough. Thank you will not heal or bring back your child. 
But.....
Thank you, is all we have to offer our donor angel. 
Thank you with all our HEARTS!!!!
This gift that you have given has buoyed us and those around us. Our donor angel is loved by so many that will never know anything about them. You are loved by so many that will never know you. 
THANK YOU!



Saturday, December 6, 2014

Because that's how we roll...

Have you ever had weeks when you are glad it has passed? It wasn't done well. But it's over!
Last we left off we had enjoyed some yummy Thanksgiving dinner in the hospital. We also announced our pregnancy to the kids. Ryleigh is not happy with us. She is actually quite mad and will be discussing her incredibly difficult track off time to her friends when she does track on. "Let's not talk about it" is her new favorite sentence. It will take some time. 
Monday we actually saw the little shape of what I am affectionately calling "bonus Homer baby"... It seems we would either be bored or naughty if we have too much time in our schedules. So a couple more doctor appointments for me should do the trick. As well as genetic counseling. If I am to get my nursing degree of hard knocks I should probably go to genetic counseling. 
Monday afternoon we heard from HTX team. They wanted more blood work to check on Gator. The on call nurse had serious car issues (bless her) and made it out to us at 11:30pm. Tuesday afternoon a call back confirmed that Alex was struggling. Instead of our regular Thursday clinic, he would be seen Wednesday. We were advised to come with a bagged packed. 
Wednesday he was admitted to increase his Milranone. From what we had always been told once you made it to 1, you stay at the hospital until you get a new heart. Wednesday also marked 300 days waiting for that new heart. Alex was not even well enough for his Bortisamib treatment. 

The increased dose changed that little guy from super tired man, to more like himself man. 
Thursday the girls saw Santa at Dr. Bills office. I was really excited to see Santa and hoping to take Gator, but his admit made it so I just told Santa what he wanted. 
Friday was the neighborhood Christsms party. There were some pretty killer deserts at the desert bar. That's always good news. 
Even more wonderful was news of discharge for today.. 
The Milranone made his numbers so much better in such a short time. Modern medicine, coupled with prayer is an incredible blessing. If you have never been witness to a miracle, come to my home. You can meet one (I actually have 4, almost five)... 
Discharge was going great when I got a call from my boyfriend/hubby who was trying to surprise me by putting up the Christmas lights. The ladder slid down the driveway of death, down our house, with him riding it 'Christmas Vacation ' status. He phoned on his way to an instacare, who wouldn't touch him and he was then going to an ER. 
We made it home and began gathering the children from the Hansens.. Then Jeff needed me to spell his folks. I made it to the hospital in time to watch him receive a whole bunch of stitches and see them splint his arm.. Although his leg looked yucky there were no fractures. I feel terrible that he was trying to do something for me and he got so hurt.  It could have been much much worse. I am super grateful it's not. 

We have successfully finished out the week.