Monday, September 5, 2011

Hospital Fiasco

I'm sad to say but our hospital stay for the mixed meal test, well....... STUNK!

It started when we were asked to be there by 4:30 to check in.  When we arrived, our room was not ready and we had to wait until 5:30 to finally go to our room.

Andrew had an hour long gymnastics class before we drove off to the hospital.  When we arrived, he was hungry of course, especially since he only had a cheese stick before class.

By the time all the fine tape was taken care of, he finally got a plate of food at 7:30 PM.  Yes, this was 5-1/2 hours since he had only a cheese stick and a full hour of gymnastics.

I ordered him a hot dog (no bun), broccoli and tator tots.  He should have received 6 oz. of tator tots for 30g carbs.  Thank goodness I took my scale because there were only 3.1 ounces on the plate!  They were ready to give him 1.0 unit of insulin when I put the breaks on.  His insulin ratio is 1:30.  At this time, the doctor was in the room.  Let's call her "Dr. Arrogant".  I don't like to call names, but this doctor earned it.

I asked her if I could just give him some gluten free cheese puffs that I brought along in case they didn't have gluten free snacks readily available.  She went on to talk down to me saying that I was told I was NOT allowed to bring in outside food.  I continued to tell her that I was told by 2 other people that I was allowed.  She said NO and started picking up the gluten free menu and telling me to order some corn or juice.  I told her no because it did not give a serving size or carb count for the corn and I don't feed my child juice unless he's low due to the sugar content.  Then she said something that pushed me OVER THE EDGE!


She did not even just say, "What about green beans?".  I'm so beside myself at this point because Andrew needs to eat, I'm only 2 doors down from his diagnosis room, he must eat only gluten free food, I haven't eat a thing since lunchtime and this endocrinologist wants to feed him green beans for his carb.  I snipped back, "green beans are not a carb!".  "Oh yeah, well, find something else", she said.  I was so furious that I snapped, "Just give him .5 units and call it quits".  I was not willing to wait another hour to get something else.  Because they could not just squirt out the .5 units, we had to wait yet again (with the food in front of Andrew's face) for the pharmacy to send up another syringe with .5 units in it.  I was so upset that I started crying.  The nurse witnessed this all and said that everything will be ok.  At this point, I'm not feeling very confident when the doctor thinks green beans are a carb.  Feeling completely belittled, I called by best man, my husband, to stay with us and help make sure that everything goes as planned.  Thankfully family stepped in to watch the other kids.

The whole thing behind having this mixed meal test was to have everything as close to what we do at home.  So first, Andrew hasn't gotten to eat on time and second he eats a meal with only 17g starch carb.  I always feed him 30g starch carbs at each meal.  This all then goes along with our slide scale 1:30.

Then snack time comes around.  They test Andrew and he's in the 140's.  Obviously this is because he just ate dinner at 7:30 and it's now 9:10.  The snack arrives at the nurse's station about 10:00 and they're ready to give him 1.5 units of insulin.  WHOA there!!!!!!  First, I only give him free snacks at night (cheese stick or almonds) and they're ready to put insulin in him from a blood glucose that was measured almost 1 hour ago!  I don't think so!  I was so mad from everything that we had been through that I told her to CANCEL the snack.  It was 10:00 and Andrew was exhausted.  I just told the nurse to tell the doctor he's tired and he's going to bed.

Then, a new doctor walked in and I have to say that she was a breathe of fresh air.  She wanted to know why we didn't want the snack.  I explained everything that we had been through that evening. She completely understood and just wanted to make sure she wasn't misinterpreting something wrong with the slide scale.   She was very understanding to our feelings and said that it was fine to go without the snack if we didn't want it.

What I really wanted to do was to feed Andrew a free snack.  He was still hungry since he only got 1 starch carb at dinner and he's used to eating cheese or almonds before he goes to bed.  When I saw he was in the lower 80's at bedtime, I knew we were in trouble.  I couldn't sleep thinking he was going to go low in the middle of the night.

Of course my prediction came true and he woke with a 68.  I was FURIOUS because there was a chance that they would have to treat him and everything we went through would have been wasted.  They would be unable to do the test if we interferred in anyway with fixing a low.

What all I can say is PRAISE GOD that He helped guide me to hold to my guns and say NO when needed.  If I would have given Andrew that 1.5 units of insulin with his snack, I'm positive he would have been much lower by morning.  Scary!

I find it extremely difficult to manage diabetes the way that we do at home in a hospital setting.  They have a habit of testing and administering the insulin an hour later on that number.  I'm sorry, but there's too much fluctuation within 1 hour for diabetics to be put into that situation.  To me, this is unacceptable!

On top of everything, Andrew has celiac which has to be controlled with a special diet of no wheat, gluten, barley, rye or oats.  I have to say that the hospital did have a wonderfully extensive gluten free menu; however, it really puts a glitch in things.  Also, when you run into a situation like we did and needed a gluten free carb on the fly, it just cannot happen.

Soooooo.......what came out of this bad situation? The best advice that I can give all PWD or parents of CWD is to be completely aware of everything that is related to your diabetes when in the hospital.  Do NOT let your guard down and do not be afraid to disagree with the care that you are getting.  If it has been too long between the time that they tested you and the time they are giving you insulin, demand that you be restested.  You are your best advocate and you must SPEAK UP!

My Question to those of you that use a pump:  If any of you have been hospitalized, do they give you permission to operate your pump or do they have to do it?


  1. I'm so sorry you are having such a difficult time with everything. I wish I had some advice!

    Both times Adam has been in the hospital (once for surgery, once for stomach flu (ER) we were pretty much given free reign to do what we wanted with his diabetes - basically, they deferred to us. With the stomach flu, they had a say, and we discussed it together.

  2. Wow Nikki...So glad God gave you the strength and wisdom to get through that. Thankfully,Matthew hasn't been in the hospital with the pump so I don't know how that works. I'm proud of the way you handled yourself. Nice work!

  3. Nikki . . . I am soooooooo sorry for being absent during this fiasco and headache-inducing time!

    Maddning at best.

    I will pray for His wisdom to shine through a Dr. who also has been granted the gifts of peace and wisdom. May He comfort you and give you rest from chaos. He gave you so much strength, my dear, dig a little deeper and you will find it waiting and ready to prevail!

  4. Thank you for the sweet comment! You are always so encouraging. I want you to be my online BFF!