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January 6, 2007

Sleep Study Ordeal & Results

Hello everyone... Hope you all had a wonderful holiday season and that many blessings come your way in 2007. The holidays have kept us busy, so my apologies for not keeping this site better updated.

Taegan finally had her sleep study at the children's hospital (which shall remain nameless) here in Indianapolis on December 19th. It was one of the most terrible medical experiences I've been through with Taegan since her NICU days... Suffice it to say, I will be writing the CEO of the hospital a detailed letter explaining why I will not be returning to their hospital for future medical care for my daughter.

It isn't just this particular experience I will be referencing, but every appointment, every hospitalization, and every encounter we've ever had with this hospital has been an unpleasant experience. I know you're thinking, "How can any trip to the hospital be a 'pleasant' experience?" I'm referring to the way we were treated, the professionalism, or lack thereof, and overall competence/incompetence.

When we arrived, they acted as if they had no idea we were scheduled to be there. No surprise there really, since they canceled our previous appt. 40 minutes before it was supposed to start, saying they had 'overbooked' the sleep lab that night.

When I called to reschedule, they scheduled me on 2 different nights while on the phone, changing between the two dates several times before deciding on the date. What is that all about!? They were also not very nice about me having to reschedule it, when it was their mistake for overbooking.

Well, unfortunately, Taegan caught a bad cold the week of the rescheduled sleep study, and *I* had to cancel that appointment. I rescheduled at that time as well, and again was given 'attitude' for canceling.

The lady on the phone remarked, 'How many times have you canceled now?' I should've gotten a clue and just said "Never mind...we'll go somewhere else." But I wasn't aware of any other hospital that did sleep study testing on pediatric patients aside from the children's hospital.

So, they found us a room, and told me to dress Taegan in her pajamas and put her in the crib. As I was dressing her, I noticed the sheets on the crib were soiled! They had what appeared to be dried mucous on them!

Twenty minutes later when someone returned to the room, I requested clean sheets be put on the crib, and pointed out the soiled spot. The employee did not change the sheets, but folded them down and tucked them under the mattress. I think my eyes were the size of saucers...

She said it would be fine... I said "I don't want my daughter sleeping on dirty sheets. She still puts everything in her mouth!" The lady assured me that she wouldn't be able to get the sheets in her mouth because she wouldn't be able to move around in the bed. What!? How was that an appropriate answer?

The night progressively got worse from here...

Taegan was supposed to have a PH probe test(measures acid reflux) as well as an EEG (checks for seizure activity) during the sleep study testing. I faxed the order to the sleep lab 3 weeks prior to our appointment, and even called to verify that they received it. The night of the study, there was no PH probe placed nor was their an EEG performed.

I questioned the person running the sleep study (I have no idea if she was a nurse or a technician, as she wore no name tag and did not identify herself... in hindsight, I should've asked for her name as well as the other rude people I dealt with that night!) and the lady assured me that "The most comprehensive tests will be performed on your daughter during the sleep study."

Well, that's all fine and good, but, where is the PH PROBE?? She tried to tell me that the "nasal cannula" would be placed in her nose last (as she was hooking up all the other wires, this conversation was taking place.) I suppose she thought by throwing out some medical terms like 'nasal cannula,' it would reassure me that they've got it all under control and that they know what they're doing. Unfortunately for her, she didn't know that I work in the medical field and am very well aware of what a nasal cannula is and also what a PH probe is and how it is to be inserted into the nose.

I questioned her further, and she simply stopped talking to me! I showed her the prescription that I had in my possession stating Taegan was to have a PH probe as well as an EEG and explained that it had been faxed 3 weeks prior... she just said that they have all the information they need, and all the tests were going to be run. I then told her I wanted to speak to whomever was in charge. Again was ignored...

All the while, Taegan was being hooked up with electrodes and being wrapped up like a mummy. The only thing you could see on her face was her nose and eyes. No cheeks, no chin, no ears, no hair etc. They put 'angel wings' on her arms that prevented her from bending them at the elbow so that she couldn't pull the wires off. This made Taegan extremely upset. I did my best to calm her, stroking the bridge of her that was the only exposed skin on her face!

What followed were several hours of crying... and coughing, and more crying... She cried so much that she was becoming congested in her lungs from all the mucous draining, I'm sure. Taegan was so exhausted before the test even began, I thought for sure she'd sleep despite being wrapped up like a mummy. No... she just kept crying... wouldn't keep her pacifier in her mouth, or take any milk etc. I tried singing to her etc. Everything I could think of to comfort her (as I could not hold her... she was in a 'crib' which looked rather like a cage, and I couldn't fit my arm through the slats.) I tried ignoring her... figuring she's got to stop crying at some point! (This began at 9pm by the way.)

Eventually, they asked me to step out of the room, and wait outside. So I did. There was a chair sitting out there, so naturally I sat there. Twenty minutes or so passed, and after several unusual stares from various staff members, I was asked to leave the area. I was told I couldn't sit there (even though there was a chair there.. I guess for decoration, I don't know!?) because of patient confidentiality. Okay?! I simply did what I was told... to wait outside the room..

They shuttled me off down the hall to the 'parent lounge.' I said I did not wish to sit in there, I wanted to stay in the room with my daughter. (They even tell you that you can sleep in the room with your child, and there is a fold out chair bed in there for the parent to sleep on). They said they felt Taegan would do better if I wasn't in there. They told me I could sleep in the lounge. I declined, and said I wanted to be notified when she was asleep, and at that time I would go back into the room to sleep there. This was 10:50pm.

At 1:10am, one of the lab workers came into the lounge and seemed to be irritated. She motioned for me to come with her, and I asked what was wrong. She told me that Taegan would not stop crying, and they needed me to calm her down. I asked if she'd been crying this whole time, and she said "yeah, pretty much." Nice.

Before I even entered Taegan's room, I could hear her crying and saying "Mommy! Mommy!" as she cried. (She rarely does this... only when she has a belly ache or something is wrong do I ever hear her cry my name.) I went to her side and slid the railing down and she tried to reach for me, but couldn't because of the straps on her arms. I just leaned down close to her and held her hand and stroked the bridge of her nose and told her it was ok...

Every cell in my body was screaming at me to just take her out of that hospital right then and there... I should've done it when they were first hooking her up and realized there would be no PH probe or EEG, and no one would even talk to me about it... I don't think anyone was even "in charge" there! If I learned anything from this experience, it is to trust my instincts. Also, to be more assertive, and to not be so nice while being assertive.

I must have stood there by her bed for an hour or so.. there was no clock in the room... but she finally fell asleep while I stroked her nose bridge. She slept off/on, waking every 20-30 minutes to cry for a few minutes until I calmed her again, reassuring her I was right there. In my estimation, she probably slept 90 minutes to 2 hours during the whole study, and not continuously.. as she would wake every so often as I described above.

At some point I fell asleep (and actually had a nightmare while sleeping...and that rarely happens to me!)

"TIME TO WAKE UP! YOU'RE ALL DONE!!!" is what I heard at 5:30am while bright lights from above blinded me. I lurched up out of the chair bed clutching my heart... Taegan started crying and was trying to cover her eyes but couldn't. I replied "Well that's a nice way to be woken up..." and was ignored.

Then the lady (technician? who knows!) started unwrapping Taegan's head and started yanking off the electrodes... I say yanking because that is what she was doing! I couldn't believe how rough she was being. I even told her I would take them off and put my hand on hers as a hint to make her STOP!!!!!!!! She didn't stop, but allowed me to assist.

Then she says, "You're going to take her home and put her in the shower, right?" I knew what she was implying... she didn't want to have to wash all the goopy gel/glue out of Taegan's hair and off her face.

I said, 'I cannot take her outside with this in her hair, it is too cold, and it will get all over her coat and her hat and the car seat. Just give me the shampoo and a towel and I will do it." and she gave me a look like I was being a pain in the ass, and said, "No, I can get her washed up, it's not a problem." Really...

So then she starts scrubbing Taegan's head with a wash rag and soap, and Taegan's whole head is bouncing all around because she's scrubbing so hard. Taegan, who as many of you know, is very even tempered and good natured, grabbed this lady's hand and pinched it real hard. I didn't have the heart to tell her NO, because I didn't blame her one bit! That is the first and only time I've ever seen Taegan react that way to anyone, even play mates! Other kids have taken toys away from Taegan etc. and it doesn't phase her... she's an easy going kid. I didn't know my child had it in her... so in a weird way, that was good to see.

After the pinching incident, I took the wash rag and soap and told the lady I'd finish the other side of Taegan's head. And I did. And we left... not even a goodbye.

I was so exhausted and emotionally drained... Taegan cried all the way out to the car, and looked worse than I felt(red face and eyes all puffy). We cried together on the ride back home at 6:30am. and I worried that I might have scarred my daughter for life with that experience. I pray she doesn't remember it... My earliest memory is around the age of 3, so I can only hope she wont remember this terrible experience.

She's been more clingy to me since then, and also gets upset when I leave her at Grandma & Grandpa's (if she realizes I'm leaving or I've left). Could just be her age... I hope anyway!

I called her pediatrician for the test results this week and it turns out she does have sleep apnea. So, the next step is to get her into an ENT (ear, nose, throat) doctor. The pediatrician scheduled us for an appt. at the same hospital as the sleep study was done in, and I am going to cancel that appt. on Monday and find another ENT. Nothing against the Dr. they have chosen, it's the hospital.. and just yesterday I heard that several people have had terrible experiences at the ENT clinic in this hospital. I'm not even going to waste my time...

I'll be sure to update this site once she's been seen by the ENT. Hopefully we can get this apnea under control/fixed before too long, as it can be dangerous.

Thanks for everyone's thoughts and prayers.

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