{ 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}.

Monday, August 18, 2008

ER mix-up

Well, we didn't get much sleep the night we found out Gavin wasn't going to get the liver transplant. The liver doc on call at the hospital ended up calling us at the hotel around midnight, to say that one of Gavin's blood labs had come back low. His Fibrinogen was low, which is a level in your blood that deals with coagulation. Normally it should be above 100, and his was at 76. So she was concerned enough that she asked us to take him to the ER asap to get a blood tranfusion of Cryoprecipitate. I could barely open my eyes at that point (all three of us had been asleep) so she said we could wait until early morning.

Andre woke up and walked him back to the hospital at 6am. Supposedly this procedure should only have taken a couple of hours, instead it ended up taking NINE hours!!! I had been calling Andre off and on all morning to see if they were done, and they hadn't even started yet. Finally at noon, I packed up everything at the hotel, checked out, walked over to the hospital and they STILL hadn't started yet! Andre and Gavin had been sitting there for 6 hours already! He kept asking all the nurses and doctors who came in why it was taking so long, and they all kept saying they were waiting on the blood bank.

Well, as many of you know, I have much less patience in situations like these, and I immediately asked to speak to a social worker, so the nurse asked what was wrong and I unleashed...

"We spent all day yesterday flying over here so our son could get a liver transplant, and then they decided they couldn't use it, we got hardly any sleep last night, we're exhausted emotionally and physically, the liver doctor said she would put the order in at midnight last night and that it should only take us a couple hours, my husband and son have been sitting here for over SIX HOURS in this tiny room all day, we've missed our flight home now, we have two older kids that we need to pick up tonight, they both have school in the morning, and instead we're stuck in here all alone when all we want to do is GO HOME to be with our friends and family!!!"

That certainly got them jumping, and 10 minutes later a nurse came and told us that the release form had never been sent to the blood bank, so everyone was waiting around for everyone else, and no one had double-checked it. Once the mix-up was found, we had a stream of nurses and doctors coming to apologize. I guess an incident report was filed and they had a meeting about it later. The liver doc who had called us at midnight, called us again and was shocked that we were still there, she thought we had left hours ago!

Meanwhile we missed our return flight home and had to re-schedule it. Finally they got the blood and the transfusion process was done in about an hour. We thankfully made it out of there by 3pm in time to catch our (rescheduled) flight home!

The next morning our transplant coordinator called and couldn't believe everything that had happened over the weekend! And the icing on the cake was that the level of blood the liver doc had been concerned about wasn't even a level they normally test for (or treat) so really, we probably didn't even need to get the blood transfusion done in the first place. (I think she was a resident doctor, so she probably just didn't know to not be concerned about it)

But oh well, better to be safe than sorry, I guess. I wouldn't have wanted to fly home and have him start bleeding mid-air or something! I'm just glad that we're finally home now and can get back to some kind of normalcy for awhile (at least our version of "normal"...).

6 comments:

Melody B. said...

Oh my goodness...seriously? Can you just have a break already!?

Janell said...

This just makes me feel so tired inside for you. I'm so sorry about the transplant not working out, and all of the other drama you had to endure. I hope you get a call for a transplant that is actually going to work out VERY VERY SOON.

Staci said...

I am so sorry that you had to go through all of that! Life is just not fair sometimes...but you have a bazillion people praying for you guys! I'm glad you were able to get things moving along after your "social worker comment"...sometimes people just need a kick in the pants.

We LOVE you!

Ken and Joy said...

Hi Bethany - I was just checking in to see how everything was going. I cannot believe this! I get so ANGRY with doctors/nurses/etc. So frustrating. Sorry things didn't go as planned. glad you guys made it home alright.

Take care,
Joy

p.s. Congrats to your mom on her marriage, my mom told me a couple days ago. That is very exciting!

Becky said...

Oh my gosh bethany...my heart breaks for you!! What an ordeal. I'm glad you let them have it and there hopefully it will prevent something like that happening in the future. Let me know if you need anything, a nap...whatever! We'd love to have your kids over to play!

{ Bethany } said...

Joy- it can be hard b/c there are a lot of residents at UCLA (docs/nurses in training) and when you have a lot of patience (ie Andre) sometimes that can be a BAD thing! We have had lots of great nurses there though and LOVE his transplant team! You just gotta watch out for those newbies sometimes! ;) Somehow we just got lost in the shuffle of the ER and they needed a kick in the pants (ie ME) haha. :)