Wednesday, October 5, 2011

Many, many things to of the list, avoid the hospital

Last week I sat down to email some of Brayden's doctors.  Brayden has several appointments over the next couple of weeks and I check in with his core doctors before some of those appointments.

I emailed his pediatrician and neurologist, discussing Brayden's slight increase in seizures and sleeping troubles (his pulse-ox monitor does not show good numbers for his breathing when he is in a deep sleep).  The pediatrician emailed me back that night with some ideas on what we could do.  The neurologist emailed me back that night and said to come to the hospital for the weekend.

Confession - I kind of ignored the neurologist's email...I had no desire to take Brayden to the hospital.  How often do you tell a doctor "No"?

I waited until the morning to sort things out.  I talked to the pediatrician.  Then I spoke to the neurologist for about 20-30 minutes, I had to acknowledge that I did get her email and did not respond.  The neurologist was still wanting to have Brayden come to the hospital, she was at the hospital for that weekend and we could have direct, immediate attention from the pulmunologist.

After much discussion, the neuro was comfortable handling things out-patient.  Thank you.  The plan:  Brayden is now officially seeing a pulmunologist...add that one to the list.  The pulmunologist will review Brayden's breathing troubles during sleep.  In the meantime, we have oxygen at home to put him on at night.

So this week and next...
  • Brayden visited the cardiologist...take that one off the list.  After an EKG and echocardiogram, the cardiologist said all looks good and Brayden does NOT need to see him regularly.
  • But we were back to the opthamologist for Brayden's eye trouble/infection.  8:00 a.m. appointment, yawn and a stop at Starbucks afterwards.  Brayden's eye does look better so just a few more days of eye drops.
  • After the opthamologist (well, after the stop at Starbucks), we headed directly to the hospital for chest x-rays that we need to take to the pulmunologist appointment.
  • Tomorrow is the first pulmunologist appointment.  We are prepared with the chest x-ray and last year's sleep study.
  • Next week is the ketogenic clinic when we meet with the neurologist for the keto team and nutritionist.  Then to the lab for blood work
  • The same day as the ketogenic clinic is the cerebral palsy clinic which is meeting with the orthopedic surgeon and physical medicine doctor.  Brayden's hip is still a problem.  His right leg is significantly shorter than his left.  And the orthopedic department at Children's is the WORST place EVER!  Long, long waits and disorganized.  It will be a long day at Children's, first keto then ortho.
Busy, busy.  Living out of the car, listening to way to much NPR.  Party time, party time...

Wait, we still have all the boys in school, homework and football almost every night.  Later in the month, Brayden has a couple more appointments but I am choosing to ignore those right now.


Debbie said...

I feel your pain...we added echocardiogram recently and cpap for sleep which has our sleep interrupted! you are not alone in the endless appointment/doctors appointments...not to mention keeping up with the others.... exhauasting!

Praying all your appointments go well for Brayden!

Leighann said...

I haven't taken Ryan back to the neurosurgeon to track his hydrocephalus ex vacuo. It's not dangerous unless we think his head is growing abnormally (i.e, retaining more fluid causing pressure) and since Ryan isn't displaying ANY symptoms I refuse to take him for a CT Scan every 3 months. He's not a candidate for shunt anyway. Ugh! Is this the same thing as telling a doctor 'no'?

The VW's said...

Don't forget to breathe Momma! I despise doctor appointments...but I'll be counting my blessings since you and Brayden have Gavin and I beat for sure! Your weeks sound like ours used to be, but thankfully Gavin's issues are mostly under control right now, so that means less appointments. Praying your appointments will lessen soon as well! Love, Hugs and Prayers!