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.
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?
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?