Duke update

Sorry for not posting sooner.  I forgot the computer when we headed to Duke on Tuesday!  Claire was scheduled to get an MRI of her abdomen, but the doctors changed their minds and she got a CT instead.  She also got an echo of her heart and an ultrasound of her liver. 

We spent Tuesday night at Duke and Claire was awoken with trying to get an IV in.  The first 2 attempts were very unsuccessful and torture!  But 2 nurses from peds surgery came in and got it on their first try thank God.  Claire was so upset.  They had to put in a large IV for the contrast for the CT so it was difficult.  She was scheduled to go down at noon, but as the doctor was in the room explaining the sedation, he got a call that the 8 am CT had canceled!  So Claire took that spot. 

We went straight down to CT and Claire was sedated.  The sedation they gave her only lasted probably 5 minutes at the most.  So they quickly did the CT scans and got great images.  Then Claire got the echo of her heart done.  They were hoping she would still be somewhat sedated but she wasn't.  But the technician was great and got all the pictures she needed.  We also ran into one of the NICU fellows that was helping out with Claire's echo.  Claire also made some new friends with the nurses in CT!  They were soooo nice and wanted to keep her!!

On the way back to the room, the ultrasound tech saw us in the hall and asked who we were.  I told her and she said "oh, you're scheduled for an US!"  I thought, no, we are not.  But she confirmed that the radiologist had just scheduled it.  So we stopped by US which worked out great.  The radiologist couldn't see the right hepatic (liver) vein on the CT so she wanted to get a doppler of it.  Long story short, Claire's left and middle hepatic veins are fine.  The right one is very, very small and basically short.  The radiologist wasn't concerned.  She expected this because there really isn't much liver tissue in the right lobe anyway. 

Side note - the radiologist we saw yesterday was one of the original ones who did the first draining of Claire's cyst when she was a few weeks old.  She was extremely nice and was so excited to see how well Claire was doing!!!

Anyways, I did notice a new area on Claire's liver on the US.  The big cyst that is there now looks like a cluster of grapes, whereas the original big cyst was just a big black looking circle.  The grape-like cyst is still there, but there was a new big black fluid filled area since the last US on 3/30.  I couldn't quite understand if the radiologist thought that the original cyst that was cut open had closed back up and re accumulated.  Or if this was fluid being trapped between Claire's abdomen wall and the liver.  I know she said it was hepatic fluid and that it wasn't "in" the liver, but sitting on top of the liver.  But it looked like it was closed in a pouch.  I asked the surgeon about it, but honestly can't remember what she said she thought it was (one of those block out moments).  So it makes me worried, but at the same time, I think this must be what caused Claire's belly to look so much bigger so quickly.  I know I didn't see it 2 weeks ago. 

So we talked with the surgeon and she said the cyst is bigger and sitting on the Inferior Vena Cava (the large vein that carries blood back to the heart - and the one that was compressed before the first liver surgery).  But it is not compressing the IVF which is great.  She is not sure if the cyst is stuck to the IVF or just touching it.  This is important for surgery.  If the cyst is just sitting on it, then it will be great.  If it's stuck to it, it will be tricky trying to get the cyst tissue detached from the IVF without tearing the vein walls since they are so thin.  Let's just pray it's not stuck. 

The plan is to show the scans to her other surgeons and get their opinions on the plan for surgery.  She could do it all at once or in stages.  I am hoping they can do it all at once.  She also wants to plan to have the other liver surgeon at Duke there for Claire's surgery.  So she will check her schedule and get back to us next week on a surgery date sometime around the first of May.  The surgery should last around 4 hours and recovery time in the hospital is 4-7 days.  I made sure to express my gratitude for her taking the time to answer all of my phone calls and concerns.  She has made sure that she is the one who checks on Claire which is great.  She has learned that I am the frantic, over protective mom that is going to ask 100 questions and wants to know the details.  And I have learned that most surgeons are not like her and don't take the time that she does.  So we are so thankful for her.  I think God had it in the plans for her to be at Duke for Claire since she has only been there a year or so.  Same with Claire's heart surgeon who came in September. 

As for Claire's heart, we haven't heard anything back on the echo.  I am still in the process of getting the cardiologist changed.  And, no, I never heard back from the cardiologist that I left messages for.  So I am still unsure what is going on. 

We made it home late last night.  It was so nice to be home!!!

On another note, we would like to wish our Aunt Doe a very special birthday today! 

Thanks for all of the prayers!!!!!!!! 

Love,
The Scott Family