As you know I am fierce when it comes to Ryan, and while I try to keep my cool. I can’t always.
Ryan ALWAYS sounds barky, I’ve talked about it here a few times, but this is her baseline. A baseline that sounds like Croup and scares folks daily, even health care professionals. She has tracheomalacia and she is getting over a sinus infection. A sinus infection that she is kicking butt on. To me and Micah she sounds great. This little sinus infection is about to become a major problem.
On Tuesday, the day that we met with her Neurologist/Epileptologist and Neurosurgeon, they ordered a 24 hour EEG and a MRI. We told them both about the sinus infection and neither seemed concerned.
Our 10AM appointment for the MRI on Thursday, didn’t really get started until 11:30. We were in the pre-op area, the Nurse had taken her vitals and history. Her pulse ox was a 96, not so bad, not the 98+ we like to see. He heads out to get the Anesthesiologist, returning alone around 12:30 (yes we are supposed to drive back to Chicago when this is over), and he beats around the bush about her sinus infection. Finally we push him and he tells us that Anesthesia doesn’t like to do procedures if a child is on an antibiotic. WHAT????? This is the first we’ve ever heard of this. I tell him to pull up her history, to keep in mind that she has severe tracheomalacia. He tells us that he will again get the Anesthesiologist. At about 1:00 she comes in and listens to Ryan’s lungs and deems her “too sick” for sedation. That her lungs sound junky, not just her upper airway. No MRI for her.
Yep, Momma Bear lost it. I disagreed with the Doctor, and while my Mother hates these stories, she raised a feisty girl and I think that she should be Proud. I disagree, because I know my daughter better than they do. I disagree because I have Ryan’s well-being in mind all of the time, and Micah and I have already weighed the risks, as has her Neurosurgeon. I demand a second opinion from another Anesthesiologist and they leave the room.
My mind is racing, there is no way in heck that I am going to be able to get Lurie Children’s Hospital in Chicago to order her up and MRI and execute it in the next few days. I’m a Mom making a request for a surgical test. I know how this works, they are going to want their own visit (and they should) then they will schedule her. It’s already Thursday and we have NO leverage at another hospital for haste, because it isn’t Cleveland Clinic affiliated. My guestimate is that we might be able to get and MRI in two weeks at the earliest. If something is wrong in her brain, this is time that we don’t have to waste. So I go in to panic mode. Panic, Panic, Panic mode. Can we mentally wait two plus weeks to find out if her brain is in trouble?
Micah stays with Ryan while I run up to our Neorosurgeon’s office. I’m so singularly focused and crying with fear and frustration that I’m sure I look possessed. Dr. Bingaman, the Surgeon is un-available, surgeries all day. I ask to speak to his Nurse, she and I discuss getting Dr. Bingaman to write a letter to our Epilepsy Doctor in Chicago, with his MRI recommendation. It’s not much, but it will help me get Chicago wheels turning. Then I go to the Neurologist/Epileptologist, and beg him to write a letter for us too.
Dr. Zen, told me that he couldn’t change Anesthesia’s mind. I confirmed that I wasn’t asking him to strong arm them, I was asking him to help me get her an MRI booked in Chicago. We can’t wait it out in Cleveland for her antibiotic to end and an MRI is an MRI is an MRI. My ferocity scares this guy, I can tell, and even though I wish I could be calmer, I’m not. I keep thinking that her brain is going to explode from the pressure of excess spinal fluid, or I envision her bleeding out her ears like they always seem to show on TV. I’ve created these images in my head and I’m wigging myself out. Two and half years of medical ups and downs with this Pickle weigh on me.
My phone rings during all of this and it’s Micah. He is in the basement MRI testing area, he confirms that the second Anethesiologist won’t do the MRI today either. So I know I need these letters. I run in to a third Neurologist/Epileptologist and I urge him to help me too. He reiterates Dr. Zen’s mantra and slowly backs away from me.
Letters in the works, I go back down to MRI and I see Micah and Ryan and she is still in her gown and not packed up in her coat ready for us to hit the road. I’m confused. He tells me that our Neurosurgeon Dr. Bingaman called from the OR and spoke to the Anesthesiologist, explaining the concerns for a brain bleed, etc…
Calmer heads prevailed (anyone’s head being calmer) and Micah confirmed her baseline and they are doing her MRI, Today. Micah fixed it all, while I was running around like a banshee upstairs.
I know that I seem to be a freak, and I probably am, but it’s hard to turn it off. Ryan was in therapy and in and out of Doctor’s offices for months and no one caught that she was having seizures. Micah and I did. Meds have been measured wrong in hospitals countless times, and we’ve caught that too. How can I be her best Advocate if I don’t risk putting up a stink. We didn’t swear or yell, we just didn’t like their decision, so we pushed back, and then I ran upstairs like a bat out of hell, with my letter writing campaign idea. You don’t get a handbook on how to behave when you have a sick kid. I’m impressed with medical staff, but I am not in awe of them. I see them as health care professionals, but Micah and I are the subject matter experts on Ryan.
All’s well that ended well. The MRI came back clear. Her pulse ox was 100% in the recovery room, and was awake and chatty throughout the trip home. A huge day for all of us, but her MRI is clear! and that is all that actually mattered. 4:30PM and we finally get on the road, thank goodness that the time change is in our favor heading West.