And Now We Wait….

Today was a long day.  Jim and I woke at 4:30 to get ready for our day.  We woke Zack up at the last-minute so that there was a chance he might actually fall back to sleep in the car.  Sadly, his wafer was leaking and we had to scramble to slap a new one on as fast as we could at 5 a.m., hop in the car, and pray we did not encounter any traffic delays on this rainy morning.  I am happy to say that the traffic was good, Zack snoozed a little, and we made it on time.

When we arrived, Zack walked into the building without a fuss.  He did need to take a few “breaks” to “rest”.  He started to get a little bit antsy as we walked down the final hallway.  He was dragging his feet (literally) and requiring a bit of cajoling, but then he saw our social worker waiting at the end of the hallway.  Ms. S told Zack she had a surprise for him and that helped him forget that he was scared.

The APU (Ambulatory Procedures Unit) was ready for Zack and had been told about his anxiety issues.  In the past when Zack has been in this unit, he has been given a chair-bed in a semi-open bay with a curtain for privacy.  This time, he was given his own room.  I was relieved and impressed as I did not know those were even an option.  The room looked similar to the rooms Zack is used to on the pediatric ward and I think it helped him feel more at ease.  As we were getting settled, Ms. S gave Zack the surprise – Night Vision Goggles!  He was pretty excited!  They started our day off right and were lots of fun.
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Turning off all the lights to try out the night vision goggles.

Zack did a good job of letting the doctors know that he wanted us to speak about him outside of his room.  I was proud of him for being able to express himself so well.  When anesthesia came, I was happy to see that we were assigned a doctor who has worked with Zack many times.  He arranged to have Zack sedated in his room and taken to the procedure room on a gurney.  Zack was not happy when the doctor came into the room and we told him we needed his PICC line to give him some Versed.  He fought us for about a minute as the medicine went into his line and then went out pretty fast.  The doctor quickly got him on the gurney and hooked up to leads and oxygen and off we went.

Things went well during Zack’s procedures.  The PICC team decided that they wanted to put a completely new line in his other arm.  They felt that his original one had been in place long enough and the risk of infection warranted a new site.  Because his scopes were being done on his intestines, the PICC line was changed first as it needed to be a sterile procedure and intestines are most certainly not sterile.

After the PICC placement, Zack had his scopes.  The original plan was for Zack to have an upper endoscopy with biopsies, a pancreatic stimulation test, and biopsies taken through his ileostomy.  The doctors decided that since he was already sedated they wanted to look at his colon as well.

The main reason for these scopes was to try to see if the doctors can narrow down the reason for Zack’s high output and sodium loss.  They tested to see if Zack has a disaccharidase deficiency.  I believe that disaccharidases are enzymes that break down complex sugars into simple sugars so that the intestine can absorb the nutrients.

In addition, the team took some biopsies to look at his cells under great magnification called electron microscopy in both his duodenum and ileum.  This is a type of microscope that uses a beam of electrons to create an image of the specimen. It is capable of much higher magnifications than a regular microscope and allows very small objects to be seen in finer detail. They looked at his esophagus, stomach, duodenum and ileum.

Next, they performed the pancreatic stimulation test.  This test was done to see if Zack’s pancreas is working properly.  Somewhere in the midst of all of this, they checked his electrolytes in both his blood and urine.  I am happy to report that his sodium level is holding steady.  His urine sodium is low, but detectable for the third straight week.  That makes me happy because it takes a LOT of effort to make this happen.  They also took blood to test for something called CDG or Congenital Diseases of Glycosylation.  We will add all of the tests taken today to the list of over 30 other things he has been tested for these past few months.

Zack did well through all the testing.  The doctor reported that everything looked normal. That is the way things go for Zack.  Things always look great internally, but clearly there is something wrong.

When Zack got to the recovery room his nurse noticed that he was having PVC’s (premature ventricular contractions) on his heart monitor.  Nobody seemed overly concerned, but in all of our time in the hospital, we had yet to see that.  I asked why that might be happening and one explanation offered was dehydration.  We asked to see what his blood work showed and saw that his electrolytes were great.  When Zack changed positions, the PVC’s stopped.  People then began to wonder if his PICC was in the correct spot.  An X-Ray showed all was well.  The PICC team said it could be that in the position Zack was in the tip of the PICC could have been touching the top of his heart and that can cause PVC’s.  Once we were home, our nurse called to say that radiology reviewed the film and wanted his PICC pulled back 1 cm.  Our home health nurse will come tomorrow to change Zack’s dressing and adjust the line.  Hopefully, that will take care of the issue.  I doubt we would be able to tell either way, but I think I will feel better knowing it was done.

Once we were discharged, Zack was very excited and chatty.  He told us in a very excited voice that he was “so happy that my procedure is done”.  He was visibly relieved.  As he went to bed this evening we were able to talk about all of the things he did to help calm himself.  We talked about how proud we were of the way he conducted himself.  I hope that one day this will translate to all of his hospital experiences.

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One relieved boy.

So now we wait, again.  We are getting pretty good at that.  Most of the tests performed today will take one week or more to complete.  The majority of the results from previous tests, with a few exceptions, have come up negative or normal.  Although this can be frustrating, each bit of information helps the doctors revise Zack’s treatment plan and get one step closer to figuring this thing out.  Patience….

~ Dawn

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