Breathing in deeply through the nose and exhaling slowly through the mouth. The Someone I saw suggested that as a technique for managing a panic attack and when I had one en route to Arizona I discovered that although it did not make me feel even the tiniest bit less screamy it gave me something to do other than gnaw my fingernails.
I am not a patient person. For about fifteen years I had a series of terrible haircuts because when I decided that the hair needed to go I always wanted it to go right that second; so hello Walk-ins Welcome. I mention this because you can multiply that by about four hundred billion to reach the urgency I feel to get Patrick into someone who can help him. That said, one of my biggest regrets is the fact that when Patrick was so sick two years ago my need to have him seen right that second resulted in a series of last minute urgent care appointments that caused Patrick to be examined by about twenty different doctors. I am sure each of them was good in their own right but their lack of familiarity with Patrick and the course of his illness caused them to draw more blood than a lakeful of leeches and put him on a three month yo-yo of every antibiotic known to pharma. This in turn did nothing but kill off the marginal bacteria leaving only the special forces bad ass bacteria that put Patrick into Children's with an IV in his arm. Mistakes were made and I strongly believe that if I had made more of an effort to insure continuous care from his primary provider he would not have needed to be hospitalized. It's on my guilt list.
Anyway with the uncertainty right now it's been extremely important to me that we put together a plan that will lead to an accurate diagnosis and proper course of treatment and/or management. It's been a crappy week of phone calls and waiting - and the news so far is worrying - but we're on the right path I hope.
I brought him into the pediatrician on Friday. His regular guy didn't have any free appointments so I scheduled with another one who Patrick has seen in the past. In the hall I saw our doctor and he told me that he had noticed Patrick was coming in so he'd briefed the doctor we'd be seeing. He'd also finally been able to talk to the pediatric neurologist we wanted (I was pleased to see one of you recommended this guy by name in the comments) who had some thoughts as well and he'd passed all that along.
The doctor spent a long time with us and I especially appreciated that when Patrick ranked his worst headache as a 3 she had the insight to ask, "And what would you rate the worst pain you have ever experienced in your life?"
"Ummmmm, a three and a half," Patrick said.
"Ah," she said.
She had him re-tested for Lyme's since she knows we live in the woods and she felt his symptoms could be consistent with that. She also repeated the blood work from three weeks ago when his CRP was a little high and his white blood count was low. Finally she did a neurological exam.
At the end she said that there are some red flags. She said the headaches concern her, particularly the one that had woken him up and the one this week that he had woken up with. She said apart from the anecdotal evidence she thought the exam itself was worrying - his balance is off and his reactions were unequal between sides. Something like that. They scheduled him for an MRI at Children's on Tuesday. Depending upon what that finds we'll either deal with it or move forward to treat the headaches with their office and the neurologist. In the meantime the neurologist has suggested daily riboflavin (vitamin B2) as something that has been useful in treating his migraine patients. Also, ibupfrofen as needed. Swimming is ok if he feels up to it. Tumbling (obviously) is out until further notice. Oh and the next episode of vomiting lands him in the ER in order to move our current timetable from soon to now.
So there it is. We're waiting. Patrick is doing quiet things like writing a choose your own adventure comic (hint: it doesn't matter which doors you choose, eventually you are going to wind up going down the spiral lava slide right into the giant shredder of death. sorry) and sketching factor trees for Edward, who is currently obsessed with numbers.
"Can you count the numbers for me?" Edward asked this morning and then he put his head on my chest while I counted. Steve walked in as I got to 436 and said, "Well. This is weird."
And Caroline is walking around with a pair of binoculars pressed backwards against her eyes, exclaiming, "Oh no! Everything is SO FAR AWAY!" She walked into the kitchen counter a minute ago and I'm pretty sure she said, "Oh damn it!" but at least she was quiet about it.
And that's our weekend. Waiting.