{ 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}.

Sunday, August 31, 2008

Scissors are evil!

Last night Andre and I were changing Gavin's line dressing and there was a bunch of tape surrounding the line so I was cutting through it...and you guessed it...I CUT THE LINE!!! I was so upset! We immediately clamped it, then packed up to go to the ER. We were so worried they'd have to take it out and replace it again, and with the holiday weekend, there was no way it would've been done before Tuesday! And surgery is the LAST thing he needs right now, especially with his blood coagulation numbers being so low!

When we got there it took awhile before the doctors figured out exactly what they were going to do and who was going to do it. No one was sure if they could repair them there, or if we'd have to drive over to Phoenix Children's Hospital. They were calling over at UCLA, too, to see what input they had. Finally one of the pediatric surgeons came in and he was able to repair it! We were so thankful!!! Thank you so much Dr. J!!!! Praise to the person who invented those repair kits!!! :D WHEW!!!

The line was barely hanging by a thread, but the cut was about an inch down from where it goes into his chest. So fortunately there was enough to work with...if it had been any closer to his chest, they wouldn't have been able to repair it. I nearly gasped out loud when the surgeon cut the bottom of the line right off...I thought it had to be attached at least a little bit for them to repair it! We had been so careful the last two hours to not let that last little thread tear off completely. But they just put a totally new bottom on it, then slide a hard plastic, 1" inch skinny tube over the two pieces, then injected glue all around inside the tube to seal the two edges together. After that he sutured each side with a little stitch. He did it all right there in the ER room so we got to watch, it was really interesting!

As he was walking out, he said to the nurse, "You need to order more repair kits, there were only 2 of these left and I've people come in before where we just had to take the line out and replace it because we didn't have any kits available." Andre and I just looked at each other like PHEW!!! We're so glad they had some last night!!!!

So we were in and out of the ER within 3 hours, which is AMAZING!!! We walked through the door at 11pm and after hooking up his TPN and Lipids, we got to go sleep in our own bed, and slept in nice and late this morning. It was SO NICE. We finally woke Gavin up at 11am because we were worried about him sleeping so long! I guess he was all zonked out from staying up all night!!!

There is still a risk of infection with his line being exposed during all of that, but we're about 24 hours out now, so hopefully we're safe. (usually you see symptoms within a few hours). Still waiting for that call...we got a little "scare" this morning, saw UCLA on the caller ID and thought "maybe????", but it was just the GI doc who had been consulted last night, calling to check up on Gavin and make sure everything went okay! :P I thought that was really nice of him though!

1 comment:

Anonymous said...

i bet "I was so upset" doesn't quite state how you were feeling about cutting the line. I would've written "I FREAKED OUT!"