Tuesday, November 30, 2010

A Perfect Day Brought To Us By Children's Memorial...

A few posts ago, I wrote about how I had finally been able to schedule Juliana's gastric emptying study.  It was scheduled for this morning at 8 AM.  I should have known it was going to go badly when I scheduled it.  I had asked if there were any special instructions.  I was told "no".  So I said, "oh, so we can feed her before hand?"  To which I was told, "Oh, no.  She can't have anything to eat 6 hours before the test".  I responded, "Hmmm, that sounds like special instructions to me".

Last night, I set my alarm for 1:45 AM so that I could feed Juliana in the middle of the night.  Ever since she was put on the appetite stimulant, she has returned to getting up in the night once or twice to eat.  My alarm went off, I got up and fed her a bottle (yes, my 19 month old is still on a bottle- walk a day in my shoes before you judge me).  She drank about 5 ounces and then fell back to sleep.  At 5:10, Ryan woke me up and told me he was done in the shower and it was my turn.  I showered and got dressed and then got the rest of our stuff ready to leave for Children's.  At 5:45 Ryan went up and got Juliana and we said good bye to Grandma Vicki (who spent the night so she could watch Noah for us) and left.

We arrived at about 7:15- we were supposed to be there no later than 7:45.  When we checked in a the front desk, the receptionist sent us to the wrong floor (second clue that the test was going to go badly).  We were redirected back to the correct floor and checked in with the radiology department who immediately fell in love with Juliana.  By 7:30 we were back in the room that had been reserved for us for the next 4 hours.  The radiologist went through the testing schedule with us and then came the part where they talked about the delivery of the isotope.

"Does Juliana eat solids?"  "Yes.  Just not a large quantity."  "We usually put the isotope in eggs and have them eat the eggs.  Will she eat eggs?"  "It would be better to put the isotope in her drink, because we know she will drink the drink.  We brought the drink with so you could do that (I pull out the drink)".  "We only do the liquid with babies or children who have a g-tube or n-g tube.  The liquid test isn't as accurate because liquids move through the stomach faster than solids do.  Usually little kids will eat enough of the eggs to make the test work."  "Well, she doesn't like to eat, which is why we are here.  The drink would be easier."  "Well, let's try the eggs first.  You just have to get her to eat some of them.  Get as much of them into her as you can."  "Okay, we can try the eggs first."

So, the special eggs come.  Fortunately they arrive with ketchup- which Juliana has recently shown a liking to.  They gave us 15 minutes to get as much eggs into her as we could.  Ryan loaded up each egg bite with ketchup.  After maybe 4 or 5 bites, Juliana was done.  She refused to open her mouth.  The techs came in and told us we had to get her to eat more eggs.  I explained that she was all done, that she would not eat anymore and that if she had not eaten enough they needed to put it into her drink.  By this time Juliana was crying on the floor.

The head tech came back and told us that they were not able to put the isotope in her drink now because she had some already in her system from the egg and the test would not be accurate, because they wouldn't be able to tell what was solid and what was liquid in her stomach.  "You told us that we had to get her to eat some of the eggs.  We did that.  If you had told us she needed to eat all of the eggs, we would have told you that that was not going to happen.  Now what are we going to do?"  "You will have to come back another time and do the test".  To which Ryan immediately replied, "We don't want to come back here."  I asked, "Can we schedule the test right now while we are still here?"  "Well, I need to get a new order from the doctor since she didn't complete the test."  "Are you kidding me?!?  You know what, I'll just talk to Dr. Fishbein at our appointment later this month."  If I was this incompetent at my job, I would be fired by now.

Since they couldn't do the test, we fed Juliana (who drank her drink- about 4 ounces and stopped crying) got her dressed, and then left to go back home.  I called my mom to let her know why we were coming home, only to find out that she was also having a bad day- she lost her contact and Noah dropped a flashlight in the toilet after he peed in it- a perfect day all around. 

Sometimes it seems like God is just finding ways to test us.  "Hmmm, what can I do to set off Jenna and Ryan today?  I think I'll mess with the test that has taken them a month to set up.  Sounds like a plan to me."  I know that's not how He works, but today that's how I feel.  On a positive note, I only swore in my head and via text message and I didn't punch anything.
The giant x-ray machine she would have been in 
Trying to eat the ketchup-y eggs
Finally getting to eat/drink something she liked
Feeling better after getting to eat
Helping Daddy work from home


  1. There really are NO words to say. I feel like punching a wall for you!!!!!!! Amazing! I don't understand how all these things keep happening! I think it's time to try a new hospital or maybe another country? How hard can it be to schedule things and provide the correct instructions @ the right time? Sorry doesn't even begin to convey how I feel for you! McKenna thinks Juliana is the cutest little girl ever....and I have to agree. Sorry bout your horrible, rotten, terrible,no good day!

  2. I would want to throw things at those people and punch them in the face. I would be an excellent witness of Christ's love... I love Juliana though--and am always amazed at how she is doing!

  3. Chili dawg also ate my english muffin (the only one in the house) and Portillo's only had one hot dog and I need new shoes! Love, MOM

  4. Wow, I cannot believe that. That is just completely unreal. I am truly speechless I can't believe they are so inconsiderate of what you have to say and not give you the proper instructions in the first place. I am so sorry, Jenna. I really thought this would have been a good visit for you all to finally see whats wrong. I am so so sorry about everything.