CDC Day at the Hospital

We spent the day at the hospital last Wednesday for Annie's annual CDC appointment.  This is her big annual appointment where we meet with nearly all of her specialists.  It takes one full day from 7:30am until 3:30pm, but it's much easier than making several trips to the hospital to see each specialist individually.  It also greatly helps all of Annie's specialists be on the same page and tuned in to each other in managing Annie's care as a team.

So today we met with our...
- Developmental pediatrician
- Neurologist
- 2 Orthopedists (spine doctor and knee doctor)
- Urologist
- Pulmonologist
- Metabolics specialist
- Dietitian
- Physical therapist
- Occupational therapist
- Social worker

The biggest and most surprising news from the day was seeing this x-ray of Annie's scoliosis...

 

This girl has major curves, but they are all in the wrong places!  Three months ago, Annie's curve measured at 72 degrees.  Today, she is at 89 degrees!  She held stable in the upper 60s for so long, that we were only anticipating a measurement today of less than 75 degrees.  We were shocked when we saw this x-ray and were told it's now 89 degrees!  

Her curve is to the point where we can no longer put off surgery.  We know for sure that we must move forward to get her curve corrected before it starts impacting her lungs and heart.  And the worse the curve gets, the more difficult the surgery will be.  I say curve in the singular sense, mostly because that one major curve is the most dangerous, but technically Annie has 3 curves in her back that need to be corrected--just like an "S" has more than one bend in it.  The other two measure about 40 degrees and 20 degrees, which will require nearly the full length of Annie's back to be fused with metal rods.  

In addition to straightening it out, they will also have to rotate her spine.  Any of you who have seen Annie out of her chair or even if you look closely at her in her chair, you can tell that one shoulder sits way forward because she has a large rib hump protrusion on her right side.  This is from the scoliosis curve, but also because of the rotation that her spine has in it right now.  Needless to say, this will be a huge surgery for her.

We will be getting Annie scheduled for a spinal fusion in November where they will implant metal rods into her back, screwed into the sides of her spine, nearly the full length of her back.  We've known this would be coming for a long time and we've been pretty nervous about such a huge and risky surgery, but after knowing how bad her curve has gotten, we just know we can no longer push back this surgery.  

We've been putting weight on Annie for the past 6 months in preparation for this surgery, and she's had her GI tests done required for surgery.  All she needs now is a more thorough set of x-rays to determine the flexibility of her curve and exactly which vertebrae the fusion will start and end with.  We will also have an in-depth appointment with the anesthesiologist a couple weeks before surgery as well. We are still nervous and scared, but at the same time we have peace that this is the best thing for Annie and somehow everything will be ok.

The orthopedist was the first doctor to meet with us, so it was a fast jump start to our long day.  Fortunately, we didn't get any other major news or changes.  Here's just a couple other brief highlights of how the rest of the day went...

We met with the urologist and got all the results from the tests Annie had done a couple weeks ago.  The cyst in her kidney remains unchanged and will continue to be monitored.  Her CMG test showed that her bladder pressure was normal--which was good since I had convinced the doctor last year that her high bladder pressure was an inaccurate result since Annie was screaming and crying while having her CMG last year.  Surprisingly, he wanted to put her on a medication to retain her urine since she has a small bladder for her age, but we told him she's in diapers, so it really doesn't matter how small her bladder is, plus urine retention can lead to more UTIs.  She's on enough drugs already.

Annie's Dexa bone density scan showed that her osteoporosis is worsening and to the point where they recommend extra medications, one an IV, to help with her bone density.  We aren't thrilled about that given the side effects of some of those drugs, but we don't have to worry about it now anyway since the orthopedist has instructed her to not be on any of those drugs in preparation for her spinal fusion.  So we'll just check her osteoporosis again next year with another Dexa scan as usual.

Annie is now 63 lbs and 56" tall (4' 8").  Our developmental pediatrician and occupational therapist continue to talk to us about the need for a lift in our home to help us get Annie to and from her bed, chair, and shower.  They also suggest we modify Annie's bathroom to have a roll-in shower.  They are concerned about our own bodies and hurting ourselves as we continue to lift 63 lbs of long, dead weight, especially when wet and slippery.  

We would love to get a ceiling rail lift, however, Annie's room will not easily accommodate one because of her vaulted ceilings.  We think we're ok for now, but as I continue to have knee pain and Justin and I once in a great while have back pain, we start to think more about this issue as Annie only grows bigger.  It's an overwhelming idea to consider how we will move Annie as we get older and she gets bigger.  We plan to have some more consultations with our OT and Assistive Technology rep in the future to possibly explore other options.  

We discussed our in-home nursing situation with our social worker, asking how we could possibly get a friend or two to be certified and become registered to receive our nursing pay.  Unfortunately, the easiest way is to have those people get a job with our nursing agency and specify that they only want to work shifts for Annie.  That's a lot to ask of someone, so in the meantime, we continue to struggle to find respite care for Annie so Justin and I can go on dates.  

There were lots of other things things discussed with other specialists, but I won't bore you with all the other details.  We came home exhausted and overwhelmed.  We've gotten used to all of Annie's special needs, but sometimes these CDC days can be tough when we are forced to sit and analyze every medical issue she has and plan for issues that will arise in the next year.  There is a lot dumped on our plate and brought to our attention on these days and I can't help but think as I drive home, just how totally foreign so many of these aspects are to people around us, and just how very different of a world we live in than the people we associate with at church or school.  

It's definitely a very isolating experience to raise a child with such severe medical issues, but it is also one of the very most rewarding and enriching experiences I will ever have.  We have met some amazing families all over the world because of Annie, who live in our "world of Aicardi Syndrome" and provide invaluable help and support.  We experience miracles and blessings in our lives that we would never be able to witness if it weren't for Annie in our home.  Things are hard, and we know things are going to get harder down the road, but I would never change anything or give up the unique experiences that I've been able to have by raising Annie.