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December 6, 2012
Yesterday was a long day!  The transport team from DuPont came up to get us around 5AM to take us to Jefferson.  Just getting Lucy transferred from her crib to their stretcher took awhile.  All of her fluids and TPN had to be transferred to 60ml syringes so that we could infuse them with syringe pumps during the ride because we could not take the large hospital infusion pumps with us.  Lucy watched everything with wide eyes, she looked scared but was so brave.  The transport team was so kind, chatting with our girl to help make her comfortable with all that they had to do.  Our night nurse prepared everything that Lucy would need med wise and supply wise to get through the day yesterday, her preparation was amazing, she thought of everything!

When we arrived at Jefferson we had to do the usual paperwork stuff which went quickly since we arrived late and they were anxious to get Lucy into the OR on time.  We met with the anaesthesiologist and doctor who was going to be preforming the surgery.  They were very kind, listening to all of our girls ridiculous requests for blood pressure cuffs for her baby, blue sticky notes, a blue pen...and the list went on and on.  They were amused, thankfully, and very accommodating.  The doctor explained to us that he was going to insert a scope down through Lucy's esophagus, through her stomach, into the opening of her small intestine where he would make a small incision to access the common bile duct.  Once in there he was going to decide whether or not he was going to place a stint.  His hope was to be able to dilate the bile duct and not have to place a stint.  If he did have to place a stint than Lucy would need to come back to have the stint removed in the next month or so, his hope was to not have to put her through this procedure twice.  


There was some difficultly accessing Lucy's common bile duct, this is what took them the longest.  Her gj-tube had to be pulled in order to make room for the scope.  The scope was big, they don't make pediatric scopes, but he told us that he had performed this procedure in a baby as young as 11 months old.  Once it was in position, they discovered that her common bile duct was huge 15mm, "the largest dilation he had ever seen!".  When he opened up the stricture they discovered at 7mm stone, lots of sludge, sediment, and "crap" his words not mine.  He explained to us that he felt that Lucy's issues were likely as a result of her severe dysmotility.  He was successful in dilating the stricture and cleaning out her bile duct without having to place a stint.  He was uncertain if her bile duct would shrink back to down to normal size, but he felt confident that the dilation would hold, as the stricture was not a result of a tight muscle, and that she would be able to drain bile once again.

Once awake Lucy was irritable and in pain, she was transferred to the PACU where we waited for a few hours for the transport team from DuPont to pick us up and bring us back.  We were able to keep Lucy on track with her med schedule because the amazing nurse we brought with us from DuPont was allowed to go into the OR with our girl and infuse all of her meds all the while they were working on her.  This was a huge blessing because as you know we run a very tight med schedule.

Once we arrived back at DuPont around 4PM we met briefly with Dr. R.  Her ordered lab work and assessed our girl.  I showed him the report from the procedure complete with pictures, told him that we needed to increase her pain meds as she was clearly in more pain, and then headed down to IR to have a new gj-tube placed in Lucy.  This was a tough ending to a long day, Lucy was in pain and uncomfortable from not draining much out of her belly all day.  We were able to place the tube with some effort but not too much difficultly, and then came back upstairs to rest.

Lucy was running a slight fever most of the day yesterday, we really didn't need to know what her exact temp was as we were already doing everything we could possibly do to treat a fever.  Lucy's lab work came back telling us that she now has pancreatitis, this was the biggest risk of doing the ERCP.  There is not much we can do to treat her pancreatitis, all we can do is provide pain relief.  After coming up with a pain plan for the night, I was able to go to sleep and sleep peacefully, really I did,  knowing that we were going to stay on top of her pain.

Thank you so much for your love and support, thoughts and prayers.  We could really use a break today from all of the medical chaos.
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Katie Lindemann said...

Our continued thoughts and prayers are with you all. Hugs,

~Jana~ said...

Lucy you are so strong and brave and have an equally brave and strong Mommy! Continued thoughts and prayers for both of you to get some rest.