Yes, I know, I had a very important appointment with my son, and baby goats all in the same day, and then I posted about the goats first. Honestly, as much as I love my goats, my son is far more important. It was just going to take a lot more time and effort to write about my son, hence this later posting.
First, I have to tell you, I have seen God work in so many ways through this process already. The good news about the appointment is that I feel we are now in good hands, and the neurologist agrees that something is not right. The bad news is, we still have no idea what the problem is. Let me tell you how this appointment came to be though….
You already know all about the process we have been through, and the teeth we have pulled, and the gray hairs we have grown to get to this point. (If not, you can catch up here and here.) So the pediatrician finally referred us to a neurologist when he suspected seizures. Well, as military, our medical insurance is Tricare, which is essentially a HMO. Once they receive the doc’s referral, they write up an authorization, assigning us to a specific doctor within their network. They send us the referral doctor’s info, and we call and make the appointment. If for some reason Tricare messes up, however, it is our job to fix it.
That’s what happened here, which at first frustrated the living daylights out of me, but now, I see what a blessing it was. I received their authorization, and upon calling to make the appointment, was told that that particular doctor was not a neurologist. I then called Tricare to ask for another referral, and they told me that I would have to do the legwork, find a doctor, and then tell them a name so they could update the paperwork. Sounds easy enough, right? Not so much though. You see, I have to research the network providers, call and make sure they accept our type of Tricare, and then schedule an appointment with them BEFORE I get the authorization, in order to ensure they will make room for us. In any case, after about 5 hours of phone calls, I got it. I figured if I had to do the leg work, I wanted to forget the local guys (no offense to any docs reading this, hopefully you understand our plight by now), and go straight to the top. I wanted a doctor that would know what they were talking about, and that I could have some measure of confidence in. Thus, I chose Children’s Hospital of Colorado in Denver, which is rumored to be the best in the state. God didn’t stop moving there, however.
Remember, I had to get an appointment before I had authorization. I also had to have an appointment within 1 month, per our pediatrician’s instruction. The soonest opening they had was April. After more calls, I discovered that they had an exception, where, if a pediatrician (referring doctor) called and consulted directly over the phone with the neurology nurse, they had “urgent” slots available much sooner. Of course, in our case, it wasn’t that simple. Our pediatrician had given us a referral, and then left TDY for 6 weeks, meaning we couldn’t request that phone consult. So, I pleaded my case, got transferred all over the place, eventually getting to explain our situation to a nurse working with the urgent scheduling department. She believed me and we were scheduled for the following week (yesterday). Tricare then authorized it, and we were good to go.
We arrived in Denver yesterday, in frigid cold and snow, and met the sweetest doctor. She asked what the problem was. I apologized for not having an official diagnosis to give her, and started from the beginning. Meanwhile, A was playing on the floor, and a med student that worked with the doc was playing with him. After I finished, they consulted for a few minutes, then returned and told me that the details I gave were critical and offered some direction. She put A through some physical tests, and agreed that something was wrong. She also agreed with our pediatrician, however, that his labwork showed nothing of concern. She also felt we could possibly rule out seizures, though that isn’t defininte until an EEG rules it out. However, she was particularly concerned about 3 issues that could cause his symptoms….1 was very rare and could be easily ruled out with specific bloodwork, 1 was more common and could possibly be confirmed with an MRI, and 1 was the old idea that it could just be the drugs causing his symptoms. She agreed with me, though, that we couldn’t accept the third option until we had ruled out any other possibility–especially at his young, more treatable, age.
So, we left her office and headed to the lab–AGAIN. Poor A. He saw the needles and immediately pulled his arms into his shirt sleeves in an attempt to hide. No amount of bribery would work this time. With a little help, we got the blood and urine done. We also scheduled his MRI and an EEG to rule out any other things. The doctor explained there were many other tests we may have to go through, but these were the simplest and least invasive, so they would be our starting point. In addition, because she was an urgent care doc, part of her job was to determine if we should be followed-up with, and if so, whether we should see a PA, an intern, or an MD (it’s a huge teaching hospital). She walked over to the appointment desk with me, and told the scheduler that she wanted us to have an appointment with an MD. Once we were assigned a name, she approvingly stated that the doc is somewhat of an old-timer type, and is one of their best. she concluded with, “You will be in good hands.”
Today, she called to report that they had received all lab results back. All results were normal, which rules out the one, rare, condition. Now, we await the MRI, which is scheduled for next week. I have to tell you, that is going to be a loooooong day! Thankfully, S is off work to care for the children. We have to wake A up at 6 to eat breakfast, because he can have no food after 6:30. Then, I have to drive him to Denver, where he will be in-processed, given a sedative, then fully anesthatized, and given an IV. At that point, he will be taken in for a roughly hour-long MRI procedure, where they will be examining several aspects of his brain. One thing they will be looking for is the second condition that concerned her. The condition, that we hope to rule out, involves the body’s destruction of its white brain matter, resulting in destruction of neurons, causing similiar symptoms to what A has. S couldn’t resist looking it up, and it was amazing to see A’s symptoms pop up. I, for once, am not researching this one, and am really not even telling folks what it is, because, as I see it, there is no point in worrying about anything until we know more.
I’m not sure when we will get the results of the MRI. I am hoping we don’t have to wait for the follow-up appointment in March. That’s a long time from now. In the mean time, though, she not only wants us to proceed with the endocrinology appointment (mainly to double check metabolic issues), she also wants me to get him enrolled ASAP with physical therapy, occupational therapy, behavioral therapy, and speech therapy.
Plus homeschool my two older children, care for my 2 other toddlers, and run my home. I confess, I am a little overwhelmed at the thought. I have peace though, as God has provided at every turn of this journey, and I know He will provide what I need for this as well.
So, we continue down this path, having no idea what is around the next bend. It’s funny that, recently, one scripture verse just continually pops into my head, and it is almost becoming my motto for day-to-day mental survival….
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34
The almost humorous part of that verse is the truth in the second part….with A around, each day has plenty of trouble of its own to keep me busy!! LOL!