Note (2 days past-publish): When this was written, I was passionate, heated and curious as to how SO many things went wrong. There are issues at the hospital and we, as patients, have a right to fix these problems so they do not happen again. While I admit I felt upset and like doing idiotic things like hitting and cursing, these things do not solve issues, and we took the steps- like waiting 2 hours and contacting the hospital- to rectify the situation. As it stands, I am still waiting for someone to get back to me, and in the meantime it has come to light that the office from whom the wrong paperwork was sent, died November 13, 2012.
There are a lot of special needs out there. In our case, our special need is dwarfism. Define it how you must to comprehend all it entails.
I want to say, “Addie is just small,” but that is not the case. Addie is small. Her airways are narrow. Her spine is different. She has structural concerns. Her head is larger than average. She has some hearing loss. Those are the different things about Adelaide. She’s also in love with running. She’s obsessed with Disney movies. She kisses and hugs with all the might a toddler can possess. She loves her baby sister to the core. She adores baked and breaded chicken, and avocado. She laughs when she screams, and she is learning to fake a cry.
She’s amazing.
You know what else is amazing? The Team I’ve assembled. It’s important. Like the brain of this whole operation, the Team is what keeps this giant medical “not average” part of our life in check. So what happens when Team falls apart? Let me elaborate.
Yesterday, we had an MRI scheduled. As usual, a young doctor walked into the small room where we wait to be taken back, but it wasn’t Dr. Deer. It was another gentleman.
He fumbled with the papers. I tried to look away while he got prepared, but it was like a train wreck. “Do you have the past information on Adelaide?” he asked the attending nurse. “No, I didn’t have a name, yet. I’ll go get it,” she replied.
Usually I am tame, but let me tell you what runs through the mind of a parent of a special needs child who has a history of crappy sedation and narrow passage ways: WHAT THE FUCK DO YOU MEAN YOU DON’T HAVE HER PATIENT INFORMATION?
I calmly explained about Addie and her issues with waking from anesthesia. I even mentioned how Dr. Deer should have it in his notes about what she was on last time, so that she woke rather well. So, we moved on. This was the part where the anesthesiologist told me that this MRI was safer than driving to the hospital that day had been. Driving to the hospital in the snow, with my 2 children and my husband, to get an MRI on a child with narrow airways… this act was safer than driving?
Have you ever wanted to punch another adult in the face?
I have.
And then it came… the question: When was the last time she ate?
I had gotten a letter explaining Adelaide could not have food after 7am. So I answered, “She ate some granola this morning… nothing past 7am.”
That put us at 6 hours. Exactly as my paper had told me.
But here’s the thing… the thing in my gut that I knew but didn’t adhere to because this letter told me different… Addie should have nothing in her system for 8 hours.
Remember that thing I felt before? Well, here it came again. Why did the paper say 6 hours, if it’s 8?!
“If you ever have a question, call us,” the doctor said… So what I gathered is that I should always be questioning what I am sent in the mail. As in a doctor sends me instructions, and even if I can follow them, I should call and question them.
I did that.
When Addie’s initial appointment was being made, I argued with the woman on the phone that she needed the anesthesiology team, not sedation alone. She refused to give in, so I made the appointment she’d called for. No more than 10 minutes later, she had called back to reschedule.
With the anesthesiology team.
See, here’s the funnest part of this whole Team thing. I am the gosh darn Captain.
So, it’s yesterday. And I am here. And I am waiting an extra 2 (TWO) hours for the 1/4 cup of granola to be settled into Addie’s belly before the MRI can even begin. And then it begins.
No… not the MRI, the clusterfuck to get to the MRI. The long walk to the ER at Rhode Island Hospital to have the MRI.
In the ER.
Ummm… OK. And then the search for a scale, because NO, you will not just base her medication on her heart rate and breathing, but on some numbers, like her height, weight and age. Oh, the scale we finally found was behind some intake desk. I was weighed holding Addie and then I was weighed alone. Precise? Sure… said NO doctor ever.
Because I do weigh my children at home weekly, I knew about what she weighed and was comfortable with the number and the doctor and the information he had given me… but the doctor in the ER (yes, the emergency room where we were having our scheduled MRI) that was doing the MRI, that was 2 hours delayed due to the wrong information being mailed to me, was different from the doctor I had spoken to earlier.
So here I am… talking to a new doctor. Two hours later than where we should have been, this hungry mother of two. This nursing, hungry mother of two. I relented. “She can come with us,” the woman who seemed incapable of telling us where to wait for her, said. (That’s right, we were told to wait either in the APC side of the building of RI Hospital, where she was supposed to be imaged, but wasn’t going to be, or in the ER section of the imaging, where she would be imaged, but it was a wide open space that people walk in and out of, or in the Hasbro post-op waiting room, where she would come to for recovery. Hooray for choices?)
“I was told I could hold the mask.” I said it flatly, gripping this 12kilo (according the inaccurate way of weighing an almost 3 year old) child in my grasp. I was damn near clawing at her back. My hungry, tired toddler… I wouldn’t let her go.
“Yes,” nodded the confused-about-where-you-wait nurse(?).
I held the mask over her face with the help of the kindest nurse, also named Michelle. She was asleep. I helped lift her to the table where she twitched and writhed. She’d been crying for Dave. “We need to go now,” said confused nurse, through my vision… I was staring through the glass as they tried to put the tube and IV into my sweet Adelaide. “Yeah,” I was emotionally broken.
We headed for the door. “You go that way,” she said… she led us… to 211 (pre-op). “You mean that one,” I pointed towards 213- the room I’d been in before… “post-op.” “Yes,” she said and walked away.
I waited. We finally ate something and I tried to focus on the horrible daytime TV shows. Our ENT came into speak to another parent… I almost wanted to hug him. Instead, Michelle, the only person I’d had confidence in the whole day, popped in almost directly behind the ENT. “She’s in recovery, but not awake,” she said. Just as I’d asked, they got us before waking her. We packed up like prisoners trying to escape at night, and hurriedly headed towards the recovery room.
She was there, hooked up, IV still in, propped. It made me sick. But she was there. And she was OK.
Our ENT actually stopped by, seeing us, to check in. I wanted to, again, hug him. When it comes to the Team, some players mean so much. The man that saved Addie’s hearing means a lot to me… not just because he saved her ears, but because Jan Growblewski has a bedside manner that I’ve only ever seen matched by our amazing pediatrician, Dr. Andree Heinl. My Team keeps me together. And as my Team means so much, the recovery nurses, as usual, did everything they could to heal us (hooray for ginger ale and laughter) and help us get on our way.
I was incredibly saddened to know that our anesthesiologist, the only man I’d trusted with my sweet girl, was moving on to another hospital out of state… which is leading me to wonder if Rhode Island hospitals are right for us anymore.
How scary that I trust our neurologist and ENT to make sure Adelaide is OK, but I cannot trust the team to get her into a state where she is safe to be “healed”?
My sweet love woke up, screaming, scared, shaken. Her bravery. Her strength. That’s what keeps me going…
Yesterday left me shaking. I am still questioning why I ever let her go under with such incompetency. I hurt, knowing that my Team has lost a player and that I am not sure there is someone to replace him. I ask you… where would you go from here?
The support system that you have is amazing. You are lucky that you’ve got such a great network behind you guys!
SO true. I worked hard to get that system!
Chelley @ A is for Adelaide recently posted…A family member, I #52weeksA4A week 6
Wow is about all I can say! You are strong, your team is strong and your warrior is STRONG!! Prayers!
<3
Chelley @ A is for Adelaide recently posted…A family member, I #52weeksA4A week 6
Oh, Chelley. I am so sorry to hear how difficult it has been. It sounds like you did everything you could to ensure a smooth ride but still the bumps were there. Your little warrior is so strong and brave. I hope her perseverance continues to inspire you and keep you strong.
You are in my thoughts!
xx.
Charlotte
Charlotte’s Little Web recently posted…The Shame Game
Thank you so much, Charlotte!
Chelley @ A is for Adelaide recently posted…A family member, I #52weeksA4A week 6
Hi there,
Sometimes, when you write, I read it like a book that I just can’t put down. This post was like that. When doctors that you trust move on, I agree, it feels as if you are abandoned. To be honest, I would find another set of doctors. If you can contact the one that left, does he recommend anyone? I know how challenging insurance is for our kids’ special needs!
I hope you find someone that you can trust. You are doing a great job though! Seems like warrior blood runs strong in your family!
Thank you so much. That is great advice. I just wish there wasn’t such a huge void. It’s like losing a friend… or that’s how it initially feels.
Chelley @ A is for Adelaide recently posted…Marvelous Monday
It is so hard when there are medical professionals who are hard to trust. I’m praying you find the right answers of where to turn next.
Cindy @MomMaven recently posted…How to Make a Glowing Pallet Bed
Thank you so much, Cindy.
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Thank you for sharing this post. You are such a great advocate for your daughter – keep it up, and always follow your gut instinct! Strength to you and your little warrior!!
Thank you! I am so blessed to have such support!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
She is such a trooper, she really is. Praying that things will improve every day for you guys.
Thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I would ask the one that is leaving for a recommendation. Someone he would trust with adelaides special needs. Otherwise, I wish I could tell you what to do. I can’t blame you for wanting different doctors but then to have to start all over again too. I’m exhausted for you just thinking about it. I’m sending good vibes your way mama!
I agree with Maggie this is what I would do. I hope Adeline is feeling better. Sucks she has to go through this at such a young age. She is a very brave little girl.
Jillian Fisher recently posted…Wordless Wednesday (2/11/15)
She’s a toughie… that’s for sure!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Thank you, Maggie! I am sad this doctor is going to Chicago! I wish I could follow him!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
That’s so tough. Doctors can be so frustrating in the simplest of circumstances. I can only imagine what you go through every visit.
sojourner recently posted…6 Apps for Tourists in New York City
Seriously, I have had my share of frustrations with lack or information from doctors – OR getting two completely different stories from different ones.
It’s scary when you’re supposed to trust the science… but even the science isn’t exact. Head spinning!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
That’s so great that you have such a great support system! I know I’d be completely lost all the time if I didn’t have such a great husband and family to make it through some rough times! Prayers for you!
Katriza @ Everything Home Life recently posted…Blogger Opps: Big Green Giveaway
The hubs makes everything a bit easier to handle for sure!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I can’t even imagine how you must feel with a cog in your machinery out of place. I guess all you can do is move forward because there’s always going to be flux on a team. It’s just the nature of a team. 🙁
Liz Mays recently posted…Chocolate Marshmallow Waffles with Raspberry Cream Topping
That is so true, Liz!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Gosh, I don’t know where I’d go from there. I’m sorry for the loss of your team member, I hope he can be replaced with someone equally as good. How frightening for a three year old to endure a sedated MRI. I was five years old when I had my first spinal surgery and I remember the nurse holding down the mask and me being a panicky crying mess strapped to a table. I’m glad you were able to be in there for Addie for that part. I bet it helped ease her anxiety.
Heather recently posted…Fun For All Seasons: Jackson Hole For The Whole Family
I wasn’t able to put her under two times this past summer and it broke parts of me that will never heal. I’m not sure if it is easier or harder to be the one to hold the mask for her… I just know it’s terrible, and she is far stronger than myself.
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Thank you for sharing such a heart-felt post!
Danette Lykins recently posted…Subtle Earth Organic Coffee Review
Thanks for stopping by, Danette!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I’m sorry it was so emotional. I hope you can replace your anesthesiologist with someone you can trust.
Patty recently posted…Blood Divide by John Sadler – Blog Tour, Book Review and Giveaway
Me too, thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Dealing with any medical issues can be scary when you dont have ppl you can have confidence in. But good for you for speaking up and making sure things go right. Id ask the team I trust to recommend others as their replacement or backup.
Onica (MommyFactor) recently posted…Nickelodeon Celebrates Black History Month with Because of Them, We Can #BlackHistory #BHM
Great advice! Thank you so much!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I think you are going wonderfully. You are standing up and protecting your child. Trust you gut. In the end that is what is right. You know. Trust yourself.
Mary recently posted…A Place Where Every Kid Can Spend Hours Being an Explorer
Thank you, Mary!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
She is so beautiful. I’m glad your a tiger mom!
Crystal recently posted…Keep it Shut Review + Giveaway
😉
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Keep up the good fight. I don’t know that I’d label them incompetent, they’re probably not used to a person who is so involved in their child’s medical needs. Yes, all parents should be, but the sad fact is a good percentage aren’t.
Scott recently posted…Highlights: ChiTAG 2014 (Endless Games)
That is true… I was very raw after this experience. Not knowing if your child will wake up from something as benign as an MRI is scary in itself and their confusion had me in a panic. I am thankful that since this post, we’ve all talked and it’s been greatly sorted out. 🙂
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Wow, what a story! Good for you though being as tough as you are. Hopefully it gets better for you and Addie!
heather meads recently posted…the slow travel route
Thank you, Heather! I hope so, too!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
oh wow how frustrating and scary! Glad you have some amazing members on your team! Prayers for your sweet baby girl!
Claire recently posted…Blogging Secrets Revealed
Thank you, Claire!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
You are so strong, I hope every thing ends well; I really like the Elsa braid as well. It’s very well done.
Soap Opera Spy recently posted…‘The Young and the Restless’ Spoilers: Valentine’s Day Plane Crash – People Die and Relationships Change Forever
Thank you! She loves wearing an Elsa braid… I think it makes her feel magical!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I’m sorry you had such a scary experience for your daughter and your family. I say follow your instincts – if it doesn’t feel right, don’t do it.
Jennifer H recently posted…Leigh-Allyn Baker Interview #BadHairDay
Amen to that!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
We’ve had our share of unpleasant and scary medical experiences as well. And seen more then enough incompetency from medical experts then I’d have thought possible. I’d begin by asking the doctor you trust that’s leaving who he would use for his own children.
valmg @ Mom Knows It All recently posted…Comparing Home Security Systems
Thank you, Val- I trust your opinions very much because I know you’ve been there!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Oh my gosh 🙁 An already extremely stressful situation made even more so… I’m sorry that a very important member of your team… sending hugs and positive thoughts your way… xx
Rebekah recently posted…Romantic Hair with the Kiss InstaWave Automatic Curler
Thank you, Rebekah!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I love following along with your Addie. My Jack has special needs and although he doesn’t have any medical issues, I always think of these two as very similar. We don’t have a medical team but we do have our therapy team and I love them so much – they are all so great with my Jack.
No matter who your team is or for, they’re so important! <3
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Good grief! What a bunch of idiots! Keep those claws out Momma Bear!
Jennifer recently posted…Gluten-Free Black Bean Brownies Recipe
RIGHT?! lol. Thank you, Jennifer <3
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Your warrior is strong just like you! What an amazing team you have!
Thanks, Lisa!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
How terrible! You and your family are so strong! I can’t imagine having to go through something like that with my little girl. I really admire you guys so much!
Courtney recently posted…Interview With Leigh-Allyn Baker of #BadHairDay #McFarlandUSAEvent
Thank you so much. I promise you, if I had the option to fall apart I would… but Addie would never allow it!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
She truly is a little warrior. Your family is amazing for staying strong and supporting her!
Elizabeth @ Being MVP recently posted…Create a Sweet Valentine’s Day Short to Share || Download Free Instant Movie Maker App Today #loveoneday #ad
<3
Chelley @ A is for Adelaide recently posted…Marvelous Monday
You are so strong and Addie is so strong. Are there other hospitals in your area. I know how important the right hospital and the right team are. When I had my stroke going to the right hospital was such a blessing. Just stay on top things like you have been doing though and I know that your little girl will get the best care possible.
Karissa recently posted…My Happy Mommy Box what I got and a review.
We may go up to Boston… but I do love our ENT and neuro and they work out of that hospital only, so I would not want to leave them. It’s hard… but I know we will find our direction again.
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Ugh, it’s so sad that this is added weight on top of what you already have to deal with. Yes, I most certainly want to punch adults in the face sometimes.
Tammi @ My Organized Chaos recently posted…Show your Pet some Love this Valentine’s Day
It’s a good thing we aren’t children and know the difference between wanting and doing, right? Sometime I get so *something* I thank the heavens above for self control!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Hugs!! You have my total sympathy. Nothing is scarier than being at the hospital with your child. Having a team that you trust is so important and valuable!!
So true! Thank you!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I love to read your posts, especially when the momma bear in you comes out! My son has autism and we have been in similar situations with his medical car. It can be so damn frustrating to go through things like this.
Kelly Hutchinson recently posted…4 Easy and Fun Workouts for the Lazy at Home
It really can, Kelly! I have claws, and I think I’m becoming better at knowing when and where to use them! Mamas gotta stick together with this stuff <3 <3
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I can’t imagine what any of this is like to go through! It sounds like you are your little girls best advocate and doing a wonderful job! I love that you stated you are the captain of the team and I think it is important that you made that known. Thoughts and prayers are with you.
Jesica H recently posted…Are you being Rewarded?
Thank you so much. I do feel like I lead the pack because I have all of the information… I just wish that we had some better communication. All teams need to talk, right?!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
What an amazing story. You have a very tough little girl there. You have an amazing team of support as well. When I had my first child she had to stay at the hospital for a little over a week and had surgery at just 3 days old. That was one of the scariest moments of my life. She was left in great hands with some amazing surgeons. It’s nice to hear about there being some great doctors out there.
Oh that sounds so scary! Being a parent is so hard sometimes! …but so worth it, too!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
I’m so sorry to hear about the horrible staff when going to get Adelaide’s MRI! I know it can be so stressful, and I don’t blame you for wanting to stick to your “team.”
Dawn recently posted…Mexican Plants: Flowers, Shrubs and Trees In Cozumel
Thank you, Dawn!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
It’s so true. Everyone should have a good support system especially when things like this happen.
So true!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
How incredibly scary. It is so important to have a great team around you
Debi recently posted…Cupid’s Arrow- Last Minute Valentine’s Day Treat idea
Indeed, Debi!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
Oh man, I can’t even imagine watching my child go through something like that. You are a strong momma and your daughter is a beautiful warrior!
Meagan recently posted…10 Quick and Easy Sore Throat Remedies #RealRelief #ad
Thank you so much, Meagan!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
This breaks my heart. We had already gone through 3 MRI’s by the time my daughter was 3, no fun at all. She is a trooper just as your little one. Be strong, you are not alone. I hope things get better.
They’re horrible! This was Addie’s 3rd and I am SO glad that we got the results already and they’re great. I am hoping that she won’t need another for a while. I am so done with dragging her through this stuff!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
My son has a heart condition and it is frustrating dealing with medical personal. I know the feeling. They cost so much money, you think they would be a little more personable and together. Finding the right mix of medical team is definitely hard, but so worth it when you find it.
Nail on the head, Aubrey!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
HUGS Mama! You are both strong and brave. She is just the cutest!
Thank you, Amanda!
Chelley @ A is for Adelaide recently posted…Marvelous Monday
She is definitely a warrior, and so are you! Praying for you all!
Jess recently posted…DIY Rose Body Scrub
Thank so much, Jess!
Chelley @ A is for Adelaide recently posted…Marvelous Monday