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.

Monday, November 2, 2015

Long awaited

I feel awful that I haven't had an opportunity to update and that I have probably forgotten so much.
Gator is doing fantastic. His body is healing, slowly, but healing. 
There is a reason we are experiencing this all. I haven't been overly excited to be at the hospital this go around. 
On top all of Gators issues. This has been one of the most "popular" hospital visits.. We have seen three other transplant buddies and two heart buddies spend time at the hospital.. On top of that we have had three neighbors come up. I understand that PCH does a fantastic job making the hospital fun, but I would rather get together on the outside. 
Shirts haven't been a favorite with all those stitches, drain and monitors. So sorry every picture has Gator shirtless. 
His determination to get better, coupled with fun activities, has surpassed my expectations. This is physical therapy. He road this bike all the way back to his room.
With his Gator slippers on. 
Chasing him with his oxygen was the amazing Kristen. 
Why does this little man want to grow up so very fast? Two teeth.. They have been popping through. Four months old and already has two teeth. I think that is very early. I had to have a sit down with him. Begging him to quit it!! Slow down!!! But he just smiled at me. 
We don't sleep much.. 
Traditionally we visit Gardner Village to see the witches. I finally got the girls there last week. Just in time. 

We've also had dance parties and school parties/parades. There has been festivities at the hospital and trick or treating.. 

We even cheered a little. 
Now we are fine tuning the last bit. On Thursday Alex had a CT that showed the fungus has not gone to his brain, sinuses and is gone from his lungs, his liver showed healing in just the right ways. The biopsy they took of his liver was as it should be with post Fontan circulation. There have been some questions about his right kidney. We are waiting to hear if the inflammation they see is due to the fungus spreading there or if it has just been hit so hard it is "recovering" from the antibiotics and antirejection meds. They are also trying to make these medications therapeutic in his body. Also, if it is best for him to have these meds via his PICC line or start taking them in pill form. We can't leave until that is sorted out. He still has a drain too. It drains the fluid away from his liver. He could actually go home with that if everything else was as it should. 
A few little tweaks and torques and we should be right as rain. 
I feel more than ever that there is just not enough of me to go around. So having friends and family who have helped has been so huge. Thank you. I just don't know how I (and by I, I mean we) would  make it? So many of you have had a hand in the corn. (Let me explain) we had an awesome lesson in Releif Society today. Amber shared a story about the unity and care that she experienced growing up. How powerful it was to her that her community was small but so well knit together. They would grow corn, harvest together, shuck, boil, and cut and store it. All together helping. Then each person would get some. 
I am so thankful that so many of you have taken my girls, and little Ashy guy, brought dinner, vacuumed my floors, driven my carpool, taken a day to be with Alex at the hospital, brought gifts of joy, sent uplifting messages and thoughts, prayed and fasted, gone shopping for milk, and been amazing health care (I know you can't reveal yourselves..HIPPA) 
I hope the "corn" is a little bit of Homie love. 


likeschocolate said...

Love you guys and you are constantly in my prayers!

Allison said...

Whew! I am so glad for an update. We fasted for your entire family yesterday and have been hoping that things with Gator were moving in the right direction. I love the card you shared and I wish we were close enough to be a part of the support army helping to buoy you all up. Thank you to the wonderful neighbors and friends who do so much! We have fingers and toes crossed that Gator can get home soon!

Julie said...

Ohhhhh, I'm so sorry you had to return to the hospital so soon :(. Kristen is one of our most favorite people there...give her a HELLO for us ;) And WAY TO GO GATOR for riding that bike all the way to your room! You are one tough guy. Our prayers & thoughts are still with you all. Please don't hesitate to ask if you need help in any way... I know everyone probably says that and I know how difficult it can be to ask for or need help. But I am in a good situation to help out at any time! Prayers for a more peaceful life VERY SOON for you sweet mama (and Gator) <3