If you see our Facebook posts, you know we have had a very crazy few days. We're still home recovering, but Chris has to head back to work (his Starbucks store was closed all week for a remodel - sadly, this meant no work and no pay for any of that store's employees).
Scarlett has been cranky for a few weeks. It's been difficult, and we have been on the lookout for a cause. Every one of her teachers and therapists have noticed the change - she doesn't hardy participate in therapy, just cries; she won't let anyone else hold her, and cries anytime I am in sight; she won't play independently; her sleep schedule has been off. It's been a tough few weeks, but nothing seemed doctor-worthy. We all agrees she is the right age for separation anxiety, and is rightfully frustrated over her lack of mobility, so we have been focusing on those areas.
Last Thursday, she was nearly inconsolable, and then woke up a lot in the night. I decided not to take her to school on Friday, and took her to the GI doctor instead. She seemed uncomfortable and very sensitive to being touched anywhere near her g-tube, so I thought maybe it was infected. The nurse there saw a small red spot, but said that it was fine, calling her tube site "pristine". She gave me a cream to help stave off any possible irritation, and sent us on our way.
Monday was nerve-wracking thanks to vaccines. She seemed fine, though a slight fever developed in the afternoon. We expected that, gave Tylenol, and moved on. Sometime in the evening, she threw up a little. We are so desensitized to vomit, we just took it in stride, attributed it to the rough day with vaccines and a hearing test, and thought nothing of it.
Tuesday, she threw up again. Wednesday, she threw up twice. If it had been a "normal" puke episode, we would have probably overlooked it, but she started to act very strangely. She would scream - like a deep, stark scream that we had never heard before - then look disoriented until she threw up just a little. It was disconcerting.
After the second episode of this on Thursday, I was done. I called the pediatrician, who we consider a "gatekeeper" to more serious doctors. She's not a brain tumor specialist, but her office is just a few minutes away, and can rule out some things before we move to more extreme measures. Especially since I was still considering the vaccines to be a possible cause, it seemed appropriate. I left a message with the office, then waited for a call back. After an hour with no response, I was feeling more impatient, so I called the Neuro-Oncology nurse line, hoping someone who knew Scarlett well would be able to advise. The nurse suggested I call the pediatrician again and ask them to see Scarlett for a neurological check - pupils, reflexes, blood pressure, etc. - just to be careful. I agreed, and made a second call to the pediatrician's office.
I had just hung up and handed Scarlett a few cheerios when the phone rang again. It was the Oncology nurse, asking us to please pack up and come straight in; after hearing the list of symptoms, the doctors wanted Scarlett to be seen immediately. We jumped into gear - changing clothes (we had been gardening), packing Scarlett, packing some food (they asked we did not feed her until they had seen her) and getting out the door.
Apparently, they had decided they would do a CT scan before we had even arrived. After a brief visit with one of the doctors, we went to radiology, where they informed us that the machines were damaged after the hospital's second construction-related plumbing break in the last year; luckily, the children's hospital is attached to the main Stanford Medical Center, so we walked through three buildings to their radiology department and got the scan right away.
By the time we returned to the clinic to see the doctor again, it was after 5 o'clock, so everyone was gone. One medical assistant was left to communicate with the doctors as they reviewed the scans. After a few minutes, my phone rang. The caller ID told me it was Scarlett's doctor, the head of the department, who we rarely ever see anymore. My heart nearly stopped, afraid of why they would have him call us. The idea that the tumor could return is never far from my mind in these situations.
When I answered the phone, he said hi, and then immediately followed with "It's not tumor." Whew. That's one of the things we have always liked about this team of doctors: they understand us, and know what we need to know first. However, he didn't have great news. There was a build-up of fluid in the ventricles of her brain and she needed to be seen by neurosurgery immediately. We asked if we had time to stop to grab dinner and some clothes; he said we should just get to the emergency room in Oakland as soon as possible. He walked us to the door of the hospital, wished us luck, and we were off.
Now, I have to apologize to him: Dr. Fisher, we stopped and got clothes anyway. And we grabbed called-ahead food from a diner. Sorry.
The stopping didn't matter much, since it was prime commute traffic time. We were in bumper to bumper traffic for almost two hours. Driving from Palo Alto to Oakland (from the southwest to northeast edges of San Francisco Bay) is never fun, and it was the worst time of day to do it. We chose to avoid the bigger bridges and stick to the more direct freeways, which passed by our house. On the way, I was CC'd on an e-mail from doctor to doctor, with the CT images attached. We finally got to the Emergency Room at 7:30.
We've never been to the ER in Oakland, and let me just say I hope to never have to do it again. It's a rough part of town, and the clientele reflects that. There were multiple security doors to pass through, with guards at each one. The staff was stretched, and took nearly two hours to figure out what to do with us, even though the neurosurgeon was waiting for us (he had apparently left by the time they got themselves organized; he had called us, but there was no cell service in the ER). We waited in the ER for more than an hour before they started making arrangements to have her admitted. The one highlight was being able to get the IV in on the first try - we've never gotten an IV in Scarlett while she was awake without a big fight. We finally got a bed upstairs around 9:30.
Since only one parent could stay, I headed home. As I left, the nurse was writing "possible surgery tomorrow", and was clarifying that Scarlett would be NPO (no food) until further notice.
When I returned the next morning, Chris had yet to see anyone from Neurosurgery. Scarlett had not slept much though the night, so neither had he. She was hungry and unhappy. The nurses were still prepping Scarlett for surgery, giving her a bath and organizing her charts for transport. Finally, the neurosurgery team came by to see her. They said the surgeon, who was making rounds on a different floor, would still decide what needed to happen when he saw her, and that any procedure would be late in the afternoon.
We were very frustrated - why had we been sent there if no one was going to do anything all night? She was not dehydrated, so she did not need the fluids she got overnight. It seemed like a lot of hassle for nothing.
Later, the surgeon finally came by. He asked why we hadn't called them first. I tried to explain how many other things there were to consider, that we didn't know it was a shunt problem, and that we had just done what we thought was best. They don't seem to quite understand how difficult it is to manage Scarlett's needs. If I had known it was a shunt problem, I would have cut out all the middlemen and called them directly.
After some poking and prodding, the neurosurgeon decided to change the setting on Scarlett's shunt from the most constricted setting to a more open setting, allowing more fluid to drain from her brain. It is simply adjusted using a special magnet pressed to the outside of her head. No surgery, at least for now. We are going to watch her for the next week, then go back in Thursday for another scan to see if things look better. She didn't need to go to the ER, stay overnight or get an IV, but since we weren't sure who to call, it went much further than it needed to.
So far, her symptoms are not much better - she is still cranky, has still thrown up a few times, and still seems off. The one good thing is that the bubble of fluid that has been on the back of her head, which has apparently been growing (though we felt it wasn't much different - the doctor disagreed) is now much smaller, softer and less noticeable. I think that some of the other ideas we had - teething and separation anxiety - are still plausible, but I hope that releasing some of the pressure in her head will take the edge off her moodiness. It takes a few days for the brain to level out after a shunt change, so we are keeping our fingers crossed that we will see some improvement soon.
Sadly, we also missed an important hearing test Friday morning as this was being sorted out. It took more than a month to schedule it, required an extra appointment we will have to repeat, and can't be rescheduled for another month. Her hearing aid ear molds were supposed to be refit yesterday, too, so she will go another month (or more) with ill-fitting hearing aids. Oh well.
Hugs. There's not much else I can think to say.
Love that strong little girl of yours. She and you are never far from my thoughts. You are an amazing family and I sincerely hope your wish comes true and that someday you can ALL forget about cancer, doctors, therapy, and just be a happy, healthy family. Give her x's and o's from all of us in blogger land.
You had a very stressful few days there. Hopefully one day things will be more relaxing for all of you.
I can totally relate to your comment that you're waiting for the next crisis to happen. Although our little girl is not sick anymore I am still expecting one of our boys to get seriously sick any moment. A slight fever has me nervous.
You don't know me, but I've been following Scarlett's story from the start. I just wanted to chime in to say I'm so sorry for the crazy, scary, muddle you've had of late. Prayers for peace, healing, and hope.
We follow your blog and can relate to your story as our daughter Carly was diagnosed with a brain tumor when she was 8 months old and she has been fighting that, and side effects from it including hydrocephalus, for the last four years. We are very aware of the issues associated with a shunt malfunction, with Carly having 32 shunts to date. The description of Scarlett's symptoms sounds so familiar, when my wife was reading the blog to me I could picture exactly what you have been going through recently. For Carly, a shunt adjustment has never really done more than buy a few days, and if she was still fussy a day after a shunt setting adjustment she was in need of a shunt replacement. It definitely varies from kid to kid, but if things haven't settled out I would push your neurosurgeon to consider a replacement. With Carly we typically see a progression of symptoms from irritability to inconsolability and then vomiting. I'd be happy to discuss anytime, and we are close by in San Francisco. Sending love to Scarlett and you.
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