{I copied and pasted these entries from our family blog way back when I originally posted them!}
Ok, yesterday things were still kind of vague for Andre and I, but today the resident pcp, the specialist and the pediatric surgeon have all come to talk with us this morning and explained everything in detail, so now I think we have a pretty good grasp on exactly what everything means.
Gavin's first HIDA scan showed indications of a blockage in his bile ducts, and his enzymes levels are elevated which also points to a blockage somewhere. So that would keep his liver from flushing out bile and such, which in turn damages the liver. Basically it is exactly the same thing alcoholics do to their liver by drinking too much...cirrhosis of the liver.
Without treatment this causes death fairly quickly. In 20-30% of Biliary Atresia cases caught before 12 weeks (ideally at 8 weeks) the liver can heal itself and no transplant would be necessary. However, after 12 weeks the success rate drops to 1%. So we are really really praying specifically that his liver is not damaged too much. We need to be that 1%!!!
The are giving him a medication called phenobarb (sp?) for the next two days which could help an internal blockage go away. So they will redo the HIDA scan on Thursday and if it shows no more blockage, they will only do a liver biopsy to see how much damage has been done to his liver, which is done with a needle under anethesia. But then they still won't know what is causing it...so we'll be more tests then I guess.
If there is still a blockage showing, Gavin will be going under surgery Friday morning at 8am. From there, there are a couple situations. Worst case scenario is Biliary Atresia, which affects about 1 in 50,000 people and usually means there are missing bile ducts & gallbladder. They have seen Gavin's gallbladder in ultrasounds, but it could be that he is just missing the parts of his bile ducts below the gallbladder, which is pretty rare as well.
In either case they will do a Kasai Procedure in which they will attach a part of his small intestine to the liver/available bile ducts, which is a 2-3 hour procedure. 90% of patients who have this Kasai Procedure will still need a liver transplant by age 5.
Best case scenario is that he has all his parts and ducts and that there is just an internal blockage that can be freed up. This would take about 45 minutes. Whatever they end up doing though, they will do a liver biopsy while they have him open, and then we'll go from there whether or not he needs a liver transplant. But for now we're just trying to focus on getting through this weekend.
Today we are just resting...no tests. They have upped his formula to a concentrated version so he can gain as much weight as possible before the surgery. He had a bubble bath this morning, which we both loved. :)
This afternoon he had a bit of a fever, which scared us so much. But it went back down a few hours later, thank goodness. There are a LOT of germs floating around in here...kids with RSV and pneumonia, etc, and the worst part is there is no "contagious" and "non-contagious" section...everyone is in the same space. So we are all more than a little paranoid.
For that reason we are trying to limit our visitors at this point (until after the surgery). We know that everyone wants to help and wish us well, but don't feel bad about not being here in person. We can both check our email and blog, and we both have our cell phones, so that is probably the best way to contact us right now. If you don't have our cell numbers, my Aunt Ann does, so feel free to get that from her. (that should cover pretty much everyone who may need it in our ward or my family).
After the surgery he'll be recouperating here for at least 2 weeks, so we'll be needing LOTS of help then. I think Dre has to go back to work fairly soon, probably next week. So for everyone who has offered to come sit with Gavin so I can go home to sleep/shower/etc, I will probably take you up on it then!Dre and I have been doing okay today...he went home to sleep for a few hours this morning b/c he stayed up with Gavin all last night so I could sleep.
We still have our moments where everything "catches up" to us and it gets scary, but mostly we're just trying to have fun with Gavin. We're trying to remember that this is in the Lord's hands and that whatever happens it is for a reason. (maybe if he had kept the fever it was b/c surgery should be delayed for another couple days, who knows). But its hard when we are basically racing against the clock at this point.
We are so thankful for all the help everyone has given us...I can't stop expressing that. Even the staff has commented that we have so much support. We are very lucky to have all our immediate and extended family, friends, and ward family...here and all throughout the country. And we're really grateful for all the prayers in Gavin's behalf. Thank you all so, so much for everything.
Our family and ward will be doing a ward fast tomorrow (Thursday) so if you can, please join in that. We ask that you please pray that they can find out what the problem is, and that Gavin's liver won't be damaged too much & will be able to heal itself, and that his body and spirit will be resilient, and that the surgeon will have clarity and be able to do the surgery successfully.
I know our ward (and family) have worked miracles before through fasting and prayer, so we have faith that it will happen again for Gavin. We just love him so much, he is such a blessing to our family...he has shown so much strength so far and we know he'll fight and pull through this.
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