{ Hello! }

My name is Gavin. I am 11 months old. I was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency that caused my liver to go into failure. I was misdiagnosed for 3 months and underwent emergency surgery before they found out what was wrong. I am on the Organ Donation List and am waiting for my "gift of life" so I can have a liver transplant. You can read about my story by clicking {here}. Thank you for visiting my online journal!

*It is our deepest sorrow to inform you that Gavin passed away while waiting to receive a liver transplant. He was only 14 days away from his 1st birthday. Please, if you haven't already, sign up to be a registered organ donor today and talk to your loved ones about your wishes: http://www.donatelife.net/. Thank you all so much for your love and support during this last year.

{ This is my family }

{ This is my family }

{ A Mother's Plea }

If you only read one thing on this website, let it be {this}.

Tuesday, May 20, 2008

Tuesday update!

Well, we're not going home today, but it is for SURE tomorrow morning! They're going to try and get us out of here as early as possible (YAY!). Gavin will be sent home with a 14 day regimen of IV antibiotics that he will need to have every 6 hours. Its going to be a lot of work, but thankfully we'll be able to do it ourselves at home instead of having to admit him to the hospital in Phoenix!

Starting yesterday Gavin was allowed "patio privileges" meaning we can take him outside. Part of the day he is unhooked from the IV pole, so then we can walk around the halls and outside without having to lug it around. It was so nice to get out with him! He hadn't seen the sun in over a week!!! Child Life (an organization that focuses on helping the kids have fun while they are in the hospital) also brought in a gym mat that we can lay on the floor in his room so he can crawl around a little bit. Gavin loved it! Seriously, Child Life is the BEST! We'd have died without them. They bring Gavin new little toys to play with everyday, and he even gets to keep them.

The little girl we share a room with, Clara, her dad works for Disney. He is an animator! He asked if we buy Disney movies, and I responded "it is my sole mission in life to own every single one!" :P so he is going to get us a DVD from work (he gets them for free!!!). Its been fun hearing his stories...he's even had a few voice roles!

While we've been here I've had random little thoughts about the pecularities of hospital life.

The GOOD:

  • one of the things I look forward to everyday is getting the elevator all to myself. When the door opens and its empty inside, its like the sun comes out. Its 10, pure seconds of solitary bliss. (how sad! haha)
  • ditto the bathrooms.
  • being so tired, you fall asleep within 5 seconds of hitting the pillow, even when the people in the hotel room next door are blaring their TV, and you don't move a single muscle until you wake up the following morning.

The BAD:

  • those darned IV poles!!! They start beeping at the most inopportune times...right after you get the baby to sleep, right after the nurse walks out of the room, every 30 minutes in the middle of the night. Clara's dad suggested that we take them out to an empty field and beat them to death with baseball bats after we get out of here (a la Office Space). I whole-heartedly agree.
  • this entire hospital is a walking, living, breathing set of Grey's Anatomy. As in, the entire medical staff (doctors included!) are young and gorgeous. If we were single, and not perpetually unshowered in our pjs, this might be a good thing. However, seeing as we are not single, we are unshowered, and we are in our pjs...its a bad thing! (word to the single, young people out there...UCLA is the place to be!)
The STRANGE:

  • I've spent more time and slept in the same room with someone else's husband, more than mine own! (thats just so wrong!)
  • Its faster for me to take the elevator down to the 1st floor to use the bathrooms down there, then it is for me to walk to the bathrooms on our floor. That just shows you how ridiculously far away they are from our room! (no, there are not bathrooms in every room here!) Especially when you factor in the wait time for the elevators!!! (which is forever!)

1 comment:

Anonymous said...

your blog made me laugh. because it's the truth.

the elevators to your self---a direct gift from God.

the bathroom situation---do they know how many people are staying on the darn floor? it made me miss banner desert a little more each time i had to walk down the hall and then realize i better just go to the first floor.

I'm glad to hear your family is home. Arizona is always brighter after being stuck in L.A. for an x-number of days.

--zackery's mom in arizona