Full Disclosure

I have a confession to make.  All has not been well around here.  And it's not just typical newborn "our lives have changed" blues.  We've been facing a lot of health issues crap.  That's the only way I can think to put it.  We didn't want to mention anything until we had some very important answers and now that we do we're going public. 

Elliott was discharged from the hospital after having sepsis on Thursday, January 12th.  On Monday, January 16th we had a follow up appointment with our pediatrician.  Before we left she mentioned that she wanted us to go back to the lab for one more heel stick to check on Elliott's bilirubin levels and some tests for overall liver function.  Before he got sick his direct bilirubin was kind of high and she had been concerned about it.  They had monitored it in the hospital and it had spiked and then come down a little.  Just to mention before we go any further- direct bilirubin (also known as conjugated bilirubin) being high is never considered normal.  It is always a sign of a problem with the liver or the hepatic system.   

We went to the lab on Tuesday the 17th.  The results came back on Thursday the 19th.  Our pediatrician called us right away because Elliott's direct bilirubin level was a 3.0.  It should be 0.  His GGT level (a test that shows liver functioning) was 320.  It should be 100.  She had already been in touch with a pediatric liver specialist- he is the director of the pediatric liver transplant program for the state of Arizona.  He wanted us to take Elliott in for an abdominal ultrasound immediately, have a bunch of labs done and then meet with him ASAP.  So, later that afternoon we went in for an ultrasound at Phoenix Children's Hospital.  They took over 70 images of Elliott's stomach, gallbladder, spleen, liver, bile ducts, intestines and rectum.  He also started Elliott on a new medication that helps to flush bile out of the liver.  The medication has to be compounded (actually created by the pharmacist), so it wasn't ready until Saturday. 

This whole time, since our pediatrician called on Thursday the 19th, the concern and the urgency for all of this was that Elliott could have a condition known as biliary atresia.  Biliary atresia is a congenital disorder that causes the bile ducts inside the liver, outside of the liver or both inside and outside to become blocked.  When bile cannot leave the liver it causes the liver to die from damage and cirrhosis.  Children with this condition must have surgery to connect the liver to the intestines by 8 weeks of age or they will die by age one.  Even with the surgery there is a 50% chance they will need a liver transplant by age 5 and an 85% chance that they will need a liver transplant by age 20.

So obviously we were just out of our minds with grief and fear that Elliott had this.  I called my mom on the way to the ultrasound and was so upset that she jumped in her car and was at our house before we even got home.  We spent the whole weekend just devastated, thinking that Elliott had this and was going to need surgery very soon and live a life full of hospitalizations, sickness and pain.  It was a very dark place to be, especially while trying to hide it from Spencer.

On Monday the 23rd I took Elliott to the lab where they took out about half of his blood (through an arm draw) because they were running so many tests. We got the levels back and his GGT level was slightly down (296) but his bilirubin was up to 3.6.  We tried not to panic even more but it was hard not to.

On Thursday the 26th we met with Dr. Miloh, the liver specialist.  It had been 7 days since we had been alerted to the possibility of a problem so Michael and I were whipped up into a frenzy of worry and panic.  Dr. Miloh  is awesome.  He spent a lot of time with us going over the lab results and just generally investigating all possibilities.  He said that his gut feeling, based on medical experience working with kids with biliary atresia, was that Elliott did not have it.  His levels would be higher and he would be sicker.  But obviously a gut feeling does not make for a diagnosis.  The plan was to get more labs the next week, do another abdominal ultrasound in a week and meet with him in a week.

This past Monday, the 30th, I took Elliott back to the lab for another blood draw, again out of his arm.  His GGT was down to 255 and his bilirubin was 3.5.  Yesterday we went back for another ultrasound in the morning and met with Dr. Miloh in the afternoon.  Dr. Miloh said that, based on the latest ultrasound and numbers, there is less than a 1% chance of Elliott having biliary atresia.  The only way to be 100% certain is to do a liver biopsy, but we all feel good about 99% certain.  Elliott's GGT level would be in the thousands by this point (7 weeks) if he had it.  That's the good news.  The bad news is that there is still something wrong with Elliott's liver and we still don't know what.  His blood tests show that he has cholestasis, meaning a condition in which the flow of bile from the liver is blocked.  Cholestatis is not a disesase.  It is a symptom of many diseases.  We have to figure out which one is causing Elliott's.

There was the possibility that his liver was just irritated by the sepsis and that caused his numbers to spike, but Dr. Miloh feels, at this point, that Elliott would be more recovered by now.  The plan from here is to repeat labs in 3 weeks and meet with Dr. Miloh again in 3 weeks.  He said there are a million possibilities of what could be going on.  None of them are as serious or as time sensitive as the biliary atresia.

While we are thrilled that Elliott does not have biliary atresia, we are back to being frustrated because we do not know what he has.  I have spent about 18 hours a day over the last 9 weeks on my phone doing internet research- first during my hospitalization, then during Elliott's and now this whole liver thing.  It is exhausting.  At this point I feel like I could be a liver specialist if I had a medical degree.

When Spencer was 5 months old he got a cold.  He had a runny nose.  I thought I would die I was so worried about him.  If I wasn't in such a state of worry and panic all the time I would laugh at myself for being so concerned about minor incidences with Spencer.  Even his non-stop colic and crying for 4 months seems preferable to "this".

After out first appointment with Dr. Miloh we were standing at the reception desk making our follow up appointment when a code blue was called over the loud speaker.  It happened to be in the outpatient area where we were.  About 30 people came rushing in from all over.  I just stood there and burst out in tears.  Some mother was back there watching her kid not breath.  I have been that mother.  It is not anything that I wish on anybody ever.

I was really, really concerned yesterday because Elliott had only gained 1 ounce in the last week.  Babies and kids with liver problems have difficulty gaining weight because their livers cannot process the calories and fat in food.  There is a possibility that we might have to put him on a special diet.  Dr.Miloh (who is triple certified as a hepatologist, a gastroenterologist and a pediatrician) wasn't concerned at all about the weight gain though, so I am trying to tell myself that if he's not worried, I shouldn't be either.  In reality Elliott has gained 1 pound 5 ounces in a month (Jan 2-Feb 2) and he had gained 2 inches in 6 weeks.  He is growing.

I know this is a whole huge thing to put out there.  I'm sorry.  It's gotten hard to keep track of "who knows" and "who doesn't".  We really didn't want to say anything until we knew for sure about the biliary atresia.  Now that we do we need to move on.  And of course I will fill you in once we know anything.  It looks like that won't be for about 3 weeks though.  So frustrating.

I know this was a bummer of a post.  Here are some cute pictures of the boys to lighten the mood a bit.