MRI/EEG

Little Bear’s MRI/EEG was last Friday. The experience was horrible. The Children’s Hospital scheduled him for an 11AM appointment. Apparently that didn’t mean 11AM. It meant 12:30. He wasn’t allowed to eat after 3AM and was allowed clear liquids until 9AM. Mama Bear made him a variety of jello flavors to eat for breakfast.

We arrived at the hospital about 45 minutes from home and did the paperwork pretty quickly. There was a card on the front where everyone who helped us was supposed to put their names for accountability in patient treatment. Papi Bear and I both nodded approvingly at this idea – there was no way anyone was going to drop the ball if they had to write their name and position on the card.

We went back to radiology. They led us to the waiting room. There were no toys, no games, no colors, no books – just a small TV with no sound that was playing Disney Junior on loop. About a dozen children ranging in age from newborn to ten were getting upset and cranky from lack of food and glut of waiting. If there is a waiting room in hell, I’m almost certain this is what it would look like.

Little Bear was hungry. He kept telling me over and over, “Leche, leche, leche. Mef, mef, mef!” (mef=mas=eat). Eventually he started to bite me. I asked repeatedly when we would be taken back for the prep. They eventually revealed that we wouldn’t be sent back until 12:30 – a full hour and fifteen minutes after we arrived to the room. They made the appointment to literally have us sit in a room and wait with an autistic 2 year old and no distractions for over an hour.

It took 30 minutes of fighting, but we finally were moved into a “bay” in the MRI area. Progress! Within a half hour he’d be in the MRI and we’d be home by 4.

At 12:20, they came in nonchalantly said, “Oh, it’s going to be at least another hour and a half. We’re running behind.” I flipped my crap at that point. Little Bear was biting me non-stop, he was crying from boredom, and the toys they had finally brought for him were starting to get boring. We fought and argued, but it did nothing. In fact, the nurse told us, “He was allowed to eat until 3AM. Why didn’t you feed him then?” Because it’s THREE AM and he’s TWO. “Well, you didn’t have to wake him up to feed him.” Oh really? Are you recommending I feed a sleeping toddler? You, a nurse in a pediatric hospital? I argued that, had they been honest from the beginning, we could have arrived 1.5 hours later and he could have had jello and juice up until we arrived. She basically shrugged and left us again – both myself and myself fuming from the bad treatment our child was receiving.

Finally, around 3PM, the anesthesiologist came in and started the process. I asked him how long the testing would be, to which he responded, “He’s having three tests done and each one takes about an hour, so I’d say 3 and a half to four hours.” We said we’d go and come back in 3 hours. The nurse said we should wait in the waiting room. I told her where she could shove her waiting room. We would go eat and come back in three hours.

Around 2.5 hours in, Papi Bear and I decided to run to the store to get some apple sauce and milk for Little Bear when he woke up. Along the ride back, we got a call from the nurse on Papi Bear’s phone, basically telling us that we were horrible parents who abandoned our child in the hospital. Papi Bear said, “Hold on… back up. What?” They said they had been calling my phone for an hour. This was untrue. I checked my phone later and they had been calling for 15 minutes. Also, we had an alternate number, my husband’s number. They said, “We expect the parents to stay in the waiting room. We aren’t babysitters.” Oh well really? You expect us to not eat all night/day, too, even though we’re not having tests done?

We arrived back to the hospital and I ran inside while Papi Bear parked the car. I found Little Bear and he was being fed juice by the nurse. There was an empty bottle of formula on the bed and I requested water for his milk. I asked them to call my husband and let him know where we were, since he was parking. The nurse responded, “We need to go home, so he should just stay out there.” To which I said nothing, since my son still had his gown and monitors on and an IV in place. She handed me my milk and got to work.

While the nurse took off the monitors, I gave him an apple sauce. About 3/4 of the way through it, she said, “Oh wait. He shouldn’t be having that. He’s on a clear liquid diet. What is that?” I said, “It’s apple sauce.” “Oh well I guess that’s okay then.”

Okay now. I went to nursing school. I may not have finished, but I went long enough to know that the following items are NOT on a clear liquid diet:

apple sauce

milk

formula

All of which they seemed perfectly okay with giving my child, despite his discharge instructions.

When we finally left, we were FURIOUS. I complained to the hospital and it took over a week to get a response from the department. Basically they’ll mention it in a meeting and hope we’ll use them again. Not likely. Not likely at all.

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Author: goldilocksbabybear

A mother dealing with the struggles of finding out her child is autistic.

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