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Raya's awful impedance study

If Raya had to sum up her 24 hour impedance study experience with one facial expression, I believe it would be this one:
One part pissed, one part sad, and one part "get me the hell out of here". The lighting in PACU wasn't great so you can't see the extent of her furrowed brow but she was not a happy girl. (and no, PACU is not typically part of an impedance study but I'll get to that later) So yeah, in short, the whole thing totally sucked. We did record a lot of "events" but it's up to the RN that evaluates the studies to see whether Raya knows what's going on inside her body as well as she seemed to during the study.

We got up early Tuesday morning and headed to the hospital so we could make it for our 7:30 check-in time. Raya only lasted about 15 minutes before she got bored and wanted to leave. She got upset with me because I wouldn't give her Tums. (#1, I didn't have any, and #2, she was NPO so she couldn't have any anyway but try telling that to a 3 year old) She insisted on flopping all over the dirty floor in admitting while we waited for her name to be called.
That was also when I realized I had left my breakfast drink and our toothbrushes at home. Oops. Thankfully it didn't take too long and we headed clear across the hospital to the endoscopy area. She got weighed & measured (14.2kg/31 lbs 4 oz, so she's lost a little more) and then got to pick out a beanie baby from the bucket. She did awesome with getting her vitals taken. She's really good about that now and even held her arm still by herself for her blood pressure this time. Usually when the cuff starts to squeeze, it makes her really antsy and I have to hold it still for her.
Once her medical history & vitals were done, she got to play for a while until the nurse that places all the probes for impedance & pH studies was ready for her.
She was totally in heaven with all those toys to play with and nobody else in the room! She kept trying to fit more toys inside the little car with her.

At about 9:00, the nurse was ready for her. I knew Raya would fight back some because she's a tough kid and doesn't like people messing with her, but I had no idea how bad it was going to be. We started with me and one nurse holding her while the other nurse tried to put the probe in her nose. It went in as far as the back of Raya's throat and stopped. She tried the other nostril & the same thing happened. Raya was getting pretty upset so she stopped for a minute. For the next attempt, I sat down on the bed with her and tried to hold the top half of her still while 2 other nurses held the bottom half still. The probe didn't go in and all it did was make Raya more panicky and upset. The nurse tried having her eat ice chips to get her to swallow, since all she needed to do was swallow and the probe would have passed into her esophagus. All that did was make her gag because she was in full on fight-or-flight panic mode by then and you can't think about chewing & swallowing when you're in that state of mind.

By this point, all of us were getting frustrated and a bit worried because we HAD to get the probe in but it just would not go past a certain point. At that point, they started talking about sedatives or anesthesia. Unfortunately, Raya has a bad reaction to Versed so that option was out. That would have been really nice & easy. We decided to try one more time before doing something different. This time, I was sitting behind her with my legs wrapped around hers, one nurse was holding her feet, another nurse was holding her arms, and I was helping to hold her head still while the other nurse tried to place the probe. She may not be very big but that girl is unbelievably strong. She fought so hard and screamed so much that there was just no way the probe was going in. Even with 4 of us holding her, she managed to pretty much get away from us and was screaming for me even though I was right there with her. She had a bloody nose, she was covered in sweat, there was foam coming out her nose, her eyes were red and bloodshot, and she had petechiae around her face. Enough was enough and they all left the room to call GI and let them know what was going on and to see if they could find an anesthesiologist. When they all backed up, she just laid on my lap and clung to me and her blanket.

Aside from the time when it took 3 or 4 nurses 2 hours to get an IV started on her when we were in Ohio for motility testing, and one of our GJ changes, this was the most traumatic procedure she's had done. The nurse that puts in pretty much all of the probes for all of the impedance & pH studies said that in all the time she's been doing it, there have only been 3 or 4 that have ended up having to go under anesthesia in order to get the probe in. She's the same person that placed Raya's pH probe almost 3 years ago so I know she's been doing it at least that long. So yeah, it was awful. I sometimes wonder what is wrong with me when I can go through something like that with her and be completely unemotional. There is no room for parental emotions in a situation like that. Me getting upset would only make her get more upset. Of course I felt horrible for putting her through 30 minutes of medical torture, but we HAD to try to get the probe in the way it's normally done because anesthesia is not something to take lightly.

After all the nurses left the room, the Child Life specialist that had talked to me for a few minutes while Raya was in the playroom came in. I imagine that everyone in the whole endoscopy area could hear her screaming. She felt bad that things had gone that way so she brought in a bag with all kinds of fun things for Raya. It had a beautiful handmade quilt, a pair of crocs with little things to decorate them with, play-doh, coloring pages & crayons, a little tiny stuffed raccoon, and a miniature tea set. Thank heavens that little kids are resilient. She was able to distract herself with the new toys and relaxed for a while.
She sat on the bed and played and watched Mickey Mouse while I ate a granola bar since I hadn't eaten before we left home. After about 20 minutes, she looked at me and said, "Mommy, I'm tougher now." What she meant was, okay, I'm ready to try again! I told her she was super tough but we were going to use some medicine to help her take a nap instead and they could put the "tube" in while she was sleeping. It melted my heart to hear her say that though. She tries so hard to rise to the occasion but some of this stuff is more than should be asked of a toddler.

Since she had eaten some ice chips while we were in between attempts (it's a coping mechanism & made her feel better) we had to wait about 90 minutes to put her under. When the nurse and anesthesiologist came in, Raya had been happy & playing but as soon as she saw the nurse, she curled up in a ball on her blanket and got really quiet. Poor kid. The anesthesiologist that came in was awesome. He asked me all the usual questions and then asked me a few more about one of the meds she's on. Turns out he's part of the pain management team at our hospital and he was surprised to hear that she has a diagnosis of visceral hyperalgesia at her age. Anyway, I really liked him and hopefully next time we need anesthesia, he'll be the one we end up with. We've actually had great anesthesiologists except for the nurse anesthetist that did her MRI anesthesia in January & didn't listen to me when I told him she needed something to help her wake up nicely.

They let me go into the endoscopy suite with her and this time, they let me stay until she was all the way under. I think they didn't want to risk having her freak out again after how the morning had gone. It's kind of freaky watching your kid go to sleep like that. She took forEVER to go under. She was really good about breathing into the mask so the gas was definitely going into her but she just kept on staying awake. The anesthesiologist kept saying, "Wow! She's really strong!" When she was out, I went to the waiting area to wait for her. It seemed like it took way longer than it should have but I think she was in PACU (post anesthesia care unit) for most of the time that I was waiting. By the time they took me back, she was awake and sitting up and none too happy to be there. They had already taken the "no-nos" off of her arms and I'm sure she was glad about that. (We didn't want to risk having her pull the probe out when she was waking up so we decided the restraints would be a good idea until she was lucid.) The first thing she said to me when I walked in was, "I want some Smarties now." I had told her she could have some after she woke up from her "nap" and she has a really good memory. I gave her Smarties to go with her cup of ice chips and she chowed down. It helped cut down on the retching & gagging she was having because of the probe running down her throat.

Once she was awake and had stopped retching and gagging momentarily, she had a chest x-ray to verify that the probe wasn't in her stomach. The nurse had to adjust it by 2cm, which meant pulling tape off her face and having me hold the probe in place while she retaped it, all of which made Raya gag more. Oh, and she was NOT happy to see that nurse again!

She was pretty annoyed by the fact that the end of the O2 sensor on her finger was folded under. It was distracting for her just like when the pantry door isn't closed all the way and she has to stop whatever she's doing and go close it. She kept picking at it and saying, "I need you to fix this."

We had to wait for a long time in PACU because other cases were coming in that were more emergent than us so the nurses were too busy to take us upstairs. We finally went up to our room around 12:45 when she should have been halfway through her 2nd feed of the day. She was begging me for her Neocate pudding so the nurse said it was okay to give it to her since they didn't have anything ready for her. (this is why I brought our own feeding pump and formula. I knew it would take too long for the hospital to get everything she needed, especially since she was just there for a test.) She was not happy to see that HER big girl bed wasn't in the room since I had told her that she'd have a big girl bed in her room instead of a crib. Kaida had asked me on Monday afternoon, "Mommy, is Raya going to be in one of those...cage things again?" referring to the hospital crib she saw Raya in before. Sad but funny. Once I made her some pudding and showed her the cool table she could eat off of in bed, she got over it and ate her pudding.

She spent most of the afternoon playing with her little tea set, the beanie baby, and the little raccoon. By the way, I found it comical that the beanie baby's name (according to its tag) is Cashew since she's very much allergic to cashews.
Isn't that quilt pretty?! I love it and so does she. Whoever made it, THANK YOU!! Once the nurses were done with her post-anesthesia vital checks, we were free to roam and I was STARVING, so we took a walk down to the cafeteria. By the time we got there, Raya had fallen asleep. Sometimes I feel silly that I still use a stroller with my 3 1/2 year old but that stroller has become her "safe place" when we go to appointments. She curled up in there and slept for at least an hour. I knew she was exhausted so I was glad she went to sleep.
She was pretty ticked when she woke up and found out we were still at the hospital. :) She wanted to go home and made no secret of that. After she woke up, she was ready to play with her "glass things" some more and had a grand time stuffing play-doh in all the little ceramic dishes. This was about the point in the day when she started telling me, "There's puke in my throat." meaning that she felt like she was refluxing. I was really proud of her for being so cooperative after the rough morning she had. She really did try to do what we asked her to do. Aaaaand then she'd all of a sudden get angry and yell, "I WANT TO GO HOME!" She also started to get all attitude-y with me and one time she said, "Um, there's PUKE in my throat here...push the button, Mommy!" with her hands on her hips.
 
In between telling me she wanted to go home, she also colored a picture for her friend Lily, who was in a room in the other part of the hospital. She's on her 30th hospital stay right now in just over 2 years.
Raya doesn't color very much, and I was SHOCKED to see how perfectly she stayed inside the lines. I've never seen her color like that before. Usually she just scribbles. She had been pretty crabby until I mentioned going to visit Lily and asked her if she wanted to color a picture for her. Distraction is the name of the game. I think it just goes to show that even from a young age, thinking of others instead of ourselves helps us to cope with the challenges in our own lives.

As soon as Raya had gotten her "nigh-night medicine" and we had met our night nurse and double checked to see if we were able to go visit Lily, I loaded her back up in the stroller and we headed across the hospital. By the time we got there, Raya was getting pretty tired. The girls kind of stared at each other and when we told them to say hi, they said it, but they weren't too interested in each other. They had both had a long, exhausting day. I guess hospital play dates aren't that exciting. :)
The funny part was that as soon as Raya had fallen asleep, Lily got all excited about her and started saying, "Look, she's asleep!" and talking to her.
She had all kinds of things to say to me too. She told me all about her new teddy bear that she had been given earlier that day and we made her ballerina Barbies dance. There is a lot of personality packed into that little body! It wasn't long before Lily fell asleep too. The girls may not have been all that excited about our visit but I had fun talking with Lily's parents. They are awesome people and Lily is an amazing little girl. We sure do love them!

After a while, we headed back to our room and I put Raya in bed. She usually kicks blankets off as soon as I put them on her but I covered her up with her new quilt and she left it there.

It was nice having the bed there instead of a crib. It made it easier for me to push the buttons on the recording box and keep her from getting her tube or the probe caught on anything. After a yucky day, it was nice to just be close to her.

Side note, as picky as I am about medical tape, this tape job drove me crazy!
I had never seen or used that kind of tape before. One of the nurses said they said they use it for endotracheal tubes. It reminds me of athletic tape. They had originally gotten out sheets of Tegaderm, but I knew as soon as I saw it that we'd need something stronger. I asked for Hypafix (which I usually have a piece or two of in my bag but I didn't this time) and they didn't have any. They brought in Durapore, which I also said no to because I wanted to leave her skin on her face when we were done, so this stuff was what they came up with. It went all the way from right next to her nostril to the hair above her ear, and there was another piece on her neck. It definitely did the job but taking it off was not fun.

The night wasn't terrible but it wasn't as quiet as I had hoped. She woke up a couple of times like she usually does. I also had to wake up a couple times to start & stop her feeds, push buttons on the recording box, and write everything down on the log sheet. One of the times that she woke up, she was clearly having a nightmare. She started thrashing around and then yelled, "I don't WANT the toys in the garbage!" and then sat up. When I tried to hold her, she pushed me away, moved to the foot of the bed,  and huddled against the rail of the bed. Any time I tried to touch her, she stuck her elbow out at me and growled. Eventually I got her to come lay back down and she went back to sleep. That was when I really felt bad about putting her through such an unpleasant experience. Thankfully, after she was fully awake yesterday morning, she decided I wasn't so bad after all and wanted to snuggle. She sat on me and colored for a while.

She played with her little dishes some more and watched Mickey Mouse Clubhouse again. I had warned her many times not to drop her dishes on the floor because they'd break but they never broke. Then one of them slid off of the chair and landed on the leg of the IV pole and broke. I think her little heart broke right along with it because boy did she cry! I felt bad so I told her we'd take it home and glue it together. There wasn't much else we had to do yesterday morning other than sit around and wait for it to be 11:00 so that the probe could come out. Things went right on schedule since we were in what is probably the quietest floor in the whole hospital. There are only 8 patients in that area now that the rooms aren't shared anymore. Pretty nice. :)

When the recording box shut off, we got to disconnect everything and then peel the tape off of Raya's face. That involved a lot of tears and a few lost hairs & skin cells (okay, a lot of skin cells) but once it was off, she was a happy girl. We loaded up all of our stuff and everything we acquired in the short time we were there and headed out.

We had planned on stopping by Lily's room and the medical records office on our way out but she was just ready to go home so we left. Once she was in the car, she was SO happy!
Nice tape burn, eh? Oh, and notice the superhero cape she made for her teddy bear with a baby wipe and a ponytail holder. Such a creative little girl. :)
She lasted about 15 minutes before she totally passed out and slept until we got home.

She was really happy to see Daddy and Kaida when we got home. She missed them a lot, even though it was only 1 day.

Now we wait for results. I still don't know what to expect and I'm trying not to get my hopes up one way or the other. My job while we were there was to push buttons on the recording box every time she started & stopped a meal (including Smarties or ice chips), got medicine, was laying down, or experienced a symptom. I had been telling her for about a week before the test that she needed to tell me EVERY time she had puke in her throat. (that's how she describes it to me) I don't know if she has a lot more reflux episodes than I realized or if she was just messing with me but between all the feeds, laying down/sitting up, meds, and symptoms, we filled up the entire log sheet and got about 1/3 of the way down the back of the page before we were done. There were some that I left off because I think she was just saying it because she had heard me say it, but there were several times when I KNOW she was refluxing. She didn't have any of the episodes she sometimes has at home where she chokes & coughs herself awake at night but hopefully we got enough things recorded that they'll be able to see what her reflux looks like on the recorded data and we'll get an accurate picture of her reflux.

We see GI in 2 weeks so I assume we'll either hear back in about a week or else we'll talk about it when we see her. Either way, I'm just glad it's over and hope we never have to do anything that involves putting something in her nose ever again. She's had a hard time since we got home. Her anxiety level is pretty high and in between playing & being happy, she's lashing out over every little thing, which is not like her. I'm SO glad her OT is back in town after being gone for 3 weeks and we get to see her tomorrow!

Comments

  1. This made me cry. Your experience brought on a horrible flashback of getting an IV into Knox last year. It was so very awful. Only, I wasn't able to stay calm and unemotional like you. When the IV was finally in, I nearly collapsed with emotion. A nurse actually made me leave the room until I could pull myself together because I wasn't helping my son. I felt so bad that I fell apart and made his high anxiety even worse. I am so sorry that this was so traumatic for you and Raya. Unfortunately it's a necessary evil, however much I don't want to put my child through things like this. I'm glad this experience is over for you, and I hope you get the best possible outcome from it.

    ReplyDelete
  2. 'I'm tougher now.'

    What a sweetheart.
    I was never that brave as a child. IV placing made me so unhappy (still wake up crying about it and I'm 24 now!)

    I've just been reading several of your posts and Raya seems such a wonderful little girl.

    God bless you guys.

    ReplyDelete

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