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.

Friday, August 29, 2014

It... Well.. This...

Yesterday at clinic we were going about our regularly schedule activities, blood draw, weight, height, check up... We hooked up with a new friend Teagan #2.
And also saw Miss Elizabeth..

Alex has been feeling kind of slow lately. When we visited with our team explaining his extra sweating, his poor appetite, his growing fatigue... Coupled with some of his blood work there was a big concern that Alex was failing and needed a little more tweaking then they felt comfortable doing in office and at home. 

So.... We were set up with a room in the ICU. Alex was doing good morally until he realized were we where and got frustrated by the circumstance. I explained that he needed to change his Milrinone from .5 to .75 and the likely hood of staying in the ICU was small.. 24 hours... We also added Spectra or Septra (I haven't actually seen this drug yet so I don't know what it's called) but we know it helps him not get infections. We have hit his immune system and need to be pro active in keeping him healthy. Flu season is creeping up on us, our whole family/extended family have pledged to help him stay healthy by getting flu shots. We can't get the mist because it stays "on you" for 14 days.. So he could potentially pick up something in those 14 days. Boo! 
Once settled in we saw Miss Jen who helped make things way more comfortable. This was an out of control time. No bags packed, no green snugly blanket, no toothbrush. So having Miss Jen here made everything better for Alex. I made it home last night to my mom and sister Pres.. They are awesome and have taken care of the little people. Jeff came up to be with his boy. Then home to sleep. While Gator is in ICU he has a nurse with him all the time so he stayed here without being scared. He had a great night and morning. He has ordered everything from room service.. 
He is gaming with Estiban from the playroom! He is tolerating all the changes.. We are doing well. 


Unknown said...

I am so sorry that he is in the icu. But you are in the best hands there are. Give him my love and my love extends to you and Jeff. We love you guys.

Lacey said...

Go get em gator! We love you sweet boy!

Unknown said...

Hopefully out in a flash! Tweaking the milrinone should help. Love you!

Esther said...

Bless him. So brave. Good momma.