Not much to report

Oh what a day…let me see if I can portray the morning that we had.  Yesterday afternoon, the attending doctor from the floor came and told me that they had changed the MRI that was scheduled for today to some sort of fancy, specialized CT scan that would take pictures of her small bowel.  I talked with Child Life about what the test would entail and decided that I would wait until this morning to talk to Keyan about it. She woke up, watched a little nick jr. (thank goodness for that TV channel here at the hospital), and than I did my best to explain the procedure.  She didn't get too upset until the nurse came in to start a peripheral IV.  She knows as soon as they put the blue band around her arm that nothing good is going to happen.  As many of you know, Keyan is just about impossible to start an IV on due to tiny veins that are squiggly and scarred from so much use.  After a few people tried, the charge nurse was finally able to get one so we headed down to radiology.  At this point I learned that it was up to me to give Keyan 450 ml of contrast into her stomach via her G-tube over the course of 40 minutes.  Ok, here is the problem….Keyan does not use her stomach…she gets 2 medications into her tummy that total about 10 ml.  She doesn’t use her stomach because it causes her great pain, makes her retch (she is unable to vomit), and just makes her overall miserable.  So, I took a deep breath, told her I would pull it back out as soon as the test was over, braced my shaking hand, and began to push this thick sticky liquid into my baby’s stomach.

As you can imagine it did not take long before she was very uncomfortable and continually retching…so much so that the liquid was profusely leaking back out form her stoma.  It was horrible.  “Hang in there little one, we are almost done”, were the only words I could find in my rattled brain.  As soon as the 40 minutes were up, I made sure we were starting the test.  We got her positioned on the table, I got my lead apron on, and the tech went to push the IV contrast into the IV they had put in just 45 minutes ago.  As she began to  push Keyan let out a scream that she uses only in extreme circumstance.  I knew something was terribly wrong. The IV had gone bad. It was infiltrating and bruising before our eyes.  Out it came, with Keyan beside herself.  I hang my head in disbelief as the tech tries to find another spot to put a new IV in.  Two different people tried and than they called the IV team and had one of the IV nurses come to radiology and they were able to get access that would never last long but would get us through the procedure.  But wait, it gets better.  Now that it has taken almost an hour to get a new IV, we have to give her more contrast into  her stomach.  By this point, I had tears running down my checks as I pushed the syringe of “crap” into her.  She was so stoic…she is very used to her tummy hurting, but only I could tell that she was staring off, removing herself from the situation in order to protect herself.  How much more must she endure?  All for information gathering???? I know that it was important but “wow”, it is so hard to put her through it. 

By the way, the results are back…everything is normal.

Do I need to say anything else?  I know it is good that it was normal but I REALLY wish we could figure why she is having such a hard time.]

The rest of the day involved getting the IV out, and removing all of the tape that everyone put on her while they were trying to get one placed.  She also had physical, occupational, and speech therapy this afternoon.  And if you know anything about Keyan, she spent the remainder of the evening watching movies and doing puzzles.  The best part of the day was when Uncle Alan and Aunt Bonnie surprised me with a visit and a piece of chocolate raspberry truffle cheesecake!  Boy that sure helped cheer me up.

Our admitting doctor was out of the hospital today but will be back tomorrow so I am hoping to make some more progress in coming up with a plan.  I guess I will just have to wait and see.