What started it all...{part 1} "Update"

{I copied and pasted these entries from our family blog way back when I originally posted them!}

Gavin had blood work done for his jaundice/weight issues (FINALLY! We had to INSIST!!!) last Friday, then we took him in Monday to have a 2nd opinion appt with a different pediatrician at the same office, and the new doc gave us the results. We werent expecting it at all...he just walked in and said "his results were abnormal, something is wrong with his liver" and from then it was pretty much a whirlwind.

He originally said he was just going to send us to a specialist this week, but about an hour after we got home he called us and said the specialist wanted us to admit Gavin to the hospital b/c of his age, so he would call us as soon as they found him a bed somewhere. A couple hours later he called back and told us they found a bed and to wait for the nurse to us. And by 4:30pm we were sitting in Admitting and getting checked in.

From there his nurse asked if we had been told any details, and we said "no" so she told us the specialist was thinking he has something called BiliaryAtresia which is a congential condition, a blockage in the liver that keeps you from excreting bile and absorbing fat (which may be why he was born so small and has had so much jaundice and trouble gaining weight). It is pretty scary...it was a rough night trying to come to terms with it.

They started doing ultrasounds and scans and bloodwork that night. It was pretty sad. :( Gavin had to fast for them and he was screaming crying for hours. We finally got to sleep around midnight, but we didn't sleep much.

This morning we did some more ultrasounds and x-rays then got to speak with the specialist in person. He said it was still inconclusive whether Gavin for sure has this condition...some things point to 'yes' and some things are inconsistent, such as Gavin has a gallbladder which you usually dont have with Biliary Atresia.

So he ordered more blood tests and urine samples to rule anything else out (genetic disease, thyroid issues, viral infections etc) and Gavin will be put on a medication for the next 48-72 hours that should help them get a clearer scan of a blockage if its there. They also started him on Pregestimil (the already digested formula that will be easier on his liver) and daily vitamin supplements.

So for the next 2 days I think we'll just be hanging out unless the doctor orders more tests or something is found.Once that last scan is done, probably Thursday, we will most likely be doing exploratory surgery and a liver biopsy to see if they would be able to do a procedure to fix the liver or if Gavin would need a liver transplant. He said that will be done before the end of the week, so Friday or Saturday. I'm not sure exactly when/if the next procedure would be done at that point, but I'm guessing fairly soon, as in next week.

This condition is usually caught by 8 weeks of age which has the highest level of success in fixing it. After week 12 the success goes down...and Gavin turned 12 weeks on Sunday. So we are lucky to have caught it at this point.

We are trying to be strong, but this is just so scary and happening so fast. :( It kind of feels like a war zone around here...we are in the Children's Ward and we can hear little kids crying/screaming all night/day. Last night one was calling for her "mommy" :'( And they are doing a lot of construction here right now, so there's just a ton of commotion.

We are doing a lot better today than yesterday though...its pretty amazing how quickly people can adapt to adverse conditions. I guess you just reach a point where there are no more tears to cry and you just have to start living normally again despite what is going on around you. And there is so much to talk about with the doctors and nurses...so its taking everything just to comprehend and retain that information and figure out what we're doing next.

Gavin is doing really well though...he's been smiling and coo-ing at everyone (except when he is getting things poked in him). We brought his bouncy chair and bathtub so hopefully in the morning I can give him a bubble bath (our favorite thing). Mostly we're all just exhausted. We haven't had any problems getting him to sleep today, thats for sure!

Our nurses and doctors here have been really great...very gentle with Gavin and understanding and kind to us, so we're really thankful for that. And my mom and my Aunt Ann have been here with us almost the entire time so far, so we haven't been dealing with it alone.

Thank you so much to everyone who has given us help, well wishes and prayers. We are really really REALLY thankful for our loving family and friends. Please pray and fast for Gavin if you can. I think they will be arranging a ward fast sometime this week, too.

{ read part 2 }