Teenie Bird with her phone and car keys- she's ready to go!
I could sense that both Dave and I were very anxious to hear what the neurologist had to say, though on the hour drive out to the hospital we didn't discuss what the doctor might tell us. We chatted about the week and looked for restaurants to eat at on our way home, and did our best to keep Teenie Bird occupied in the backseat.
We finally arrived at the hospital and, despite our very explicit directions provided by the hospital, we still got lost in trying to find the location of the doctor's office. We initially went to the area of the hospital where Teenie Bird's EEG was conducted....no, that's not right. After finally asking for directions, we turned back around, got back on yet another elevator, which thrilled Teenie Bird to pieces, and rode it to another part of the hospital. We wound our way through the hospital hallways with Teenie Bird leading the way. Her saunter and little wag of her shoulders was out in full force, bringing smiles to the faces of the people we passed.
We found the neurologists' colorful office with animals hanging from the ceilings and butterflies on the walls and Teenie Bird liked the place immediately as they were playing one of her favorite cartoons on the overhead television.
I went to the desk and filled out yet more paperwork, despite having already filled out paperwork that was sent to us in the mail, and amazingly I realized then that I had forgotten Teenie Bird's insurance card. It's amazing where ones brain goes sometimes...we've been anxiously awaiting this appointment for weeks and weeks, and yet I can't remember to grab her insurance card off the table? Good grief. At least we're starting off on the right foot!
We were eventually led back into an examination room where a nurse took Teenie Bird's height, weight and blood pressure. She was still 23.2 pds., and about 31" tall. Whadd'ya know, she hadn't gained weight or grown since the previous Friday when we visited with the geneticist. I asked the nurse if they had received the geneticist's report, and she indicated they had received it via fax and it was in our file. That's great, I thought, then the neurologist should be fully caught up on what we know of Teenie Bird's condition to date.
We were then led into a room where we waited some time for the neurologist to come in.
Our view from the examination room: the ER, helipad, and highway
While we waited, we gave Teenie Bird some of the toys the office provides for patients. She was kept pretty well entertained. She behaved better, and for longer, than with the geneticist. Sadly, this kid is getting used to being in a doctor's office.
 |
| Playing with toys in the doctor's office |
Coloring a picture with crayons
When the neurologist slowly ambled into the room after about a 30 to 40 minute wait, I was surprised at his appearance. He had a full head of white hair, white beard, glasses and was a little hunched over. He walked with a slight limp and a cane. Though it was only when he finally spoke, after settling himself on a stool, with our file and a pen, that I realized the visit might be more difficult than I previously thought. He was so soft spoken I could hardly hear him over the room's heating duct system. I kept having to lean forward and say, "Pardon?" or pointedly read his lips, instead of making eye contact.
For most of the two-hour appointment, he took down Teenie Bird's medical history, my medical history during my pregnancy and labor (which is always fun to relive, time and time again), before finally examining her. He checked her reflexes and her hands. He tickled her feet, though interestingly, I noted that her left foot reacted less than her right foot did to his tickling them, but I don't know if that means anything.
He also checked her special shoes very carefully, turning them over and sideways. David and I both sat in silence watching him check first one shoe and then the other, while Teenie Bird very nearly jumped out of her skin in the quiet. I swear he looked at her shoes for nearly 5 minutes, drawing a mini-diagram of them on his report, and making illegible notes about them. He didn't offer up any information as to what he was looking for, but it was my own inexperienced conclusion that perhaps he was looking for scuff marks or uneven wear and tear on her shoes, to see if she walked unevenly on one shoe or the other.
We had a hard time explaining to the doctor what exactly we were seeing during Teenie Bird's "episodes". Were these actually seizures? We thought so last year, and both the sitter and my parents had seen them. But now we're not so sure. There's definitely something happening, but perhaps its been her vision all along, and not her brain. I described how her eye turned out and she didn't seem to be seeing me, and he said, sort of judgmentally (I felt), "and what makes you think those are seizures?" I stumbled through describing what we were seeing, but hopefully got across to him that we're just not sure what's what, and hopefully our visit with him will merely be a step in ruling out yet another possibility.
He seemed unsatisfied with my inarticulate response and kept pressing me for further description- what do her hands do during these episodes? What do her feet do? What does her face do? My answer was that she basically remains immobile, but seems startled if I'm touching her when she comes out of it, but hadn't been when she entered into the "episode".
He requested we keep a journal of these episodes, when we see them, what's going on around her when they happen, how her body reacts, etc. Well, now that we've been home from the doctor for a week, I've found it incredibly difficult to follow up with this request. I see her eye stray and the look of her eyes change constantly throughout the day. When this happens, more often than not, I can look at her and tell immediately, just by her eyes, whether she's actually seeing me or not. Other times it's more difficult.
In the end, he said he was going to take it seriously that what we're seeing in her is seizures. He requested an MRI of her brain, for which she'll have to be sedated for. He also requested more blood be drawn and several tests run to look for absent seizures and hypotonia, amongst other possible muscular disorders, due to her muscle delays.
We return to the hospital April 20th for her MRI and April 28th for the results. I'm not looking forward to the MRI, since she must be anesthetized, and due to the likelihood of her having Malignant Hypothermia, they have to ensure the anesthesia they give her is not one she's allergic to. An allergic reaction happens very quickly and an antidote must be administered fast before the patient's temperature rises and they suffer multi-system organ failure preceding a very fast death. It's quite scary. I told Dave I won't be at ease until she wakes up and we can take her home.
Our very next step in the process however, is our visit with an opthamalogist on April 4th. This time the doctor is a woman, and though I know it's sexist, perhaps I can appeal to her motherly instincts to push as hard as she can to figure out what's exactly wrong with this child's vision (due to an optometrist's previous findings that her eyes were perfectly fine) because "nothing" is not the right answer. Even her own Mother can see that much, when I, more than anyone, would much rather nothing be wrong with my precious little Teenie Bird.
Until next time, friends...
No comments:
Post a Comment