In spina bifida circles I often hear something like, "I'm having an 'I hate spina bifida' day." Which means two things. 1) Some days it's really hard to deal with spina bifida, and 2) Some days it's not.
There were two instances in January where I witnessed Evan having an episode where his lower lip felt tingly and his tongue had spasms, making it hard for him to talk. It lasts about a minute or two and then goes away. He's completely coherent when it happens. He told me about 3-4 other times when it happened that I didn't see. The second time I saw it, I filmed it and then quickly contacted neurosurgery at UCSF. They shared our experience and video with neurology and their epilepsy team and scheduled us for a neurology consult.
Neurology Appointment
San Francisco, January 12, 2018
Our typical encounters with neurology at spina bifida clinic go something like:
"He looks good. Do you have any questions?"
Me: "Nope."
We are aware that Evan has heterotopia and hydrocephalus and Chiari II--all sorts of brain abnormalities. But they haven't been symptomatic enough to meet directly with neurology before. The neurologist asked lots of questions, did some observations, and watched our video. She concluded it didn't look like seizures--too localized. Didn't look like Bells Palsy--not enough facial droop. He's the right age to develop a tic--but his tongue spasms seem involuntary and a tic wouldn't normally include tingling. Maybe an allergic reaction? Basically...she didn't know. It's hard to tell. She scheduled us for an EEG.
 |
| The boys love playing on this hill outside the hospital |
 |
| Foggy view of the bay from the Lawrence Science Center at Berkeley |
EEG & Orthopedics Consult
San Francisco, January 25, 2018
The blessed-cursed day
Curse: Steering goes out and battery light turns on in the car while I'm on the freeway.
Blessing: The car does not break down on the Bay Bridge.
Curse: The car does break down before we make it to the hospital.
Blessing: We just added roadside assistance to our insurance plan. Phew! Tow guy picks us up super fast and is willing to drop us off at the hospital. We make it to our appointments in time.
Small Curse: I didn't get to stop at Dynamo Donuts and get the passion fruit chocolate donut I've been dreaming about since the last time we came. *sniff sniff
Blessing: Appointments go smoothly.
Curse: UCSF has the worst cell service in the world. My phone battery nearly dies.
Blessing: Isaiah stayed home from work and can keep in touch with the car repair shop while I'm at the hospital. I brought a fully-charged iPad and am able to write down directions to the car repair shop. It's only 1.7 miles away so we can walk. We didn't have Seth. Evan is strong. It's not raining like the forecast said. All good things. We can make it!
Curse: Evan has to go potty 1/2 mile into our walk.
Blessing: Community park and bathroom appear out of nowhere on the next block. Remember, this is San Francisco. Parks are rare.
Curse: Isaiah calls on our way to the shop. The car won't be fixed until tomorrow. Oh, and it's going to cost $800.
Blessing: Car repair shop guy gets us a great deal on a rental car to take home. Enterprise comes to pick us up. (I can't stop saying their motto to myself while we're driving.)
Giant Blessing: As we pull into Enterprise, car repair shop guy calls and says they will be able to fix our car today after all!! Super sweet Enterprise driver lady takes us back to the shop. We get our car fixed for slightly less than expected, and best of all we don't have to drive back tomorrow.
What a day!
 |
| Evan was thrilled to ride in a tow truck. I was less than amused. |
 |
| Child services had paint in the waiting room for the EEG |
At this point I'm having flashbacks to Evan's shunt surgery 3 years ago when he didn't wake up and they did an EEG to see if he was alive.
We got to cross Hwy 101 on this AWESOME bridge on our way to the car shop. I want to go back. It has the coolest view of downtown and you're on top of all the cars. It's crazy!
I should mention a few things. First, we didn't expect the EEG to show much of anything. His tongue episodes are so infrequent and they go away, and he has no other symptoms of shunt failure or anything. Nothing indicates this is a severe problem, and chances of anything showing up on an EEG are small. But we're trying to cover our bases by having this imaging done.
Also, since we were making the trip to UCSF anyway, I also scheduled a consult with Orthopedics to discuss the osteotomy surgery. They did leg x-rays and basically told us that Evan is a great candidate for surgery and we can call to set up a date when we're ready. It's been an overwhelming day and I need to talk to Isaiah first.
So...the next day Ortho calls me and says, "Pick a day for surgery and we'll pencil you in." I pick March 2. Eek! What have I gotten myself into? I hope we're making the right choice. This is gonna be terrible! I'm excited. I'm scared. We got this!
Then we get the call from neurology a few days later... This is where the whole "I hate spina bifida day" thing comes in. Not that we're surprised by this kind of news anymore, but Evan's EEG showed abnormal brain activity. I have a lot of thoughts on this.
To be continued...
No comments:
Post a Comment