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| Hope waiting with mommy to go in to surgery |
Although the day was both physically and emotionally exhausting, the emotional battle actually started the previous week with us having to fight with our medical aid to cover her procedure. Unfortunately, that battle has not yet been concluded, and it means if we don't get special concession for Hope, our medical savings are almost depleted for the year now because her special brain stem tests were very expensive.
After sending numerous emails and making as many phone calls, I found myself completely despondent and dejected; it's like every incident that involves our precious little girl is met with massive resistance and lack of understanding. I balk at every time that I have to explain to yet another anonymous call center agent that my daughter has x, y, and z disabilities and additional health complications and risks. The agents try to sound sympathetic and understanding but they seem to also be scripted with certain responses and the lack of humanity and genuine empathy is gut-wrenching. Most of the time I just want to hang the phone up and cry in frustration. Why is it so difficult to just have people understand? This is a medical aid so it should be there to aid us, not to be an obstacle.
For now, at least, the procedure is not covered under the hospital plan even though Hope must be sedated and monitored by a full team of medical crew because of the high risk of complications because of her age and her physiological condition. Even the two page motivation letter from the specialist was not enough to sway medical aid.
It's just so frustrating and disheartening to feel like we have to almost constantly fight the ignorance of people - the same ignorance that we had until the middle of 2010 - and it feels often like it's a losing battle.
At least, at the end of the day, Hope's procedure - although it was agonisingly long (almost three hours) - was successful. She came out of the theater beside herself in anguish and had blood pouring out of her nose. She was scrambling and wrenching herself from side to side and it took us probably ten minutes to calm her down and stem the blood. Once she was calm, she managed to dose off in my arms.
In terms of the surgeries, her adenoids were safely removed (they were larger than normal so this should hopefully alleviate her breathing problems and mitigate any future infections in that region). The doctor did observe that her tonsils are abnormally large (but we are sincerely hoping they never need to be removed, we had to endure another terrible waiting period in the same ward as last week with all the other parents whose kids came out of surgery. It was nearly impossible not to cry alongside the other parents at the traumatic experience they were all going through; some even came to us wiping away their tears and asking hopeful enquiries about how long the pain lasts and we could sense they were just asking us to tell them it would get better by tomorrow).
The auditory brain stem tests revealed that she has no significant (or remarkable) hearing issues. This last bit of news has come as a complete and splendid surprise! I sat with Hope wrapped up in my arms when the doctor told us this and I just marveled at how well Hope is actually doing despite her condition - she has a healthy heart, healthy hearing, and nothing else we can see at this stage that is out of sync. Really grateful and relieved! I can't even explain how relieved we are! Even the doctor was surprised that we expected the worst, but I think we are just used to bracing ourselves for further fights and struggles for Hope, so this really was an unexpected and blessed surprise.
Hope is resting at home and this morning seemed more like herself, although admittedly I did have to leave for work so anything could be happening now but latest reports are that all seems to be fine and she will be back to school tomorrow.
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