Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

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. 


auntiejenni said...

man....i am praying so, so, soooo hard for you guys....every single day. crying prayers. i think the crying prayers work the best. angels are watching over that sweet husband of yours. that's all i can say. no....i'll say more...there's about a quarter of the heavenly angels on guard duty all around you, your house, your car, the hospital and all those earthly angels helping you. gosh, i love you all so much and wish oh wish oh wish i could hold you all in my arms. all of you. smooch everyone so good for their great auntie....who they probably do not even remember. dang. love you bunches.

Brando said...

Yikes! We also have a driveway of death! This year the Lord stopped me from doing lights though, so all is well. Hope your boyfriend/hubby is ok.

Praying for you and your children tonight, thank you for letting us read your blog. I found it to be something I needed tonight, and found it by chance???