Hope's operation and latest news

Yesterday, Kat, Elora, Hope and I spent practically the whole day at Westville Hospital (practically our second home of late; it's so regular now that even the nursing staff recognise us and remember our previous visits). I have to state that Elora is the most angelic little baby ever, not a fuss every time we take on of her siblings to the hospital. Elora, when you're old enough to read this, YOU ARE AWESOME :)

Hope waiting with mommy to go in to surgery

Hope went in to have her adenoids removed as well as having some auditory brain stem tests while she was under general anaesthetic.

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.

A reminder of a parent's love

Arthur puts on a brave face as
he waits to go in for surgery

This morning we took our little hero, Arthur, to the hospital to have his tonsils and adenoids removed.

Such a brave little soul - mom gave him a good preparation speech about what was going to happen at the hospital and we both have been telling him for days that the doctor would fix his breathing and snoring. We didn't go too deep into the sore throat after the surgery but we got him very ready for the actual trip to the hospital.

I've had to take my kids to the hospital a number of times - Arthur's near-death experience with the aspirating of breast milk into his lungs, Hope's near-death experience of swallowing a cowrie shell that lodged in her esophagus, Hope's grommet surgery, Arthur's broken leg - it's almost like second home for us but that never makes it any easier.

Today went smoothly at the beginning but while we were waiting in the main ward with the other parents whose kids were in ahead of ours, we started to experience the impending distress as one by one the other parents' kids were brought back from theatre, screaming, crying, wailing, and in a heck of a lot of distress. I sat quietly, observing the looks on the other parents' faces as they shifted from anxious waiting, to relief at seeing their kids, to frowns of despair and concern as their kids practically leapt into their embraces from the surgical gurneys.

The sounds in the ward quickly grew from anxious silence to horrendous weeping and wailing that resembled an emergency room after an earthquake. Such was the tumult in the ward that the emotion became too much for a mother sat next to us and she began to sob, even before her little girl was brought out to her.

Kat and I had an anxious wait for Arthur because he was forth in the queue from our doctor's surgery slate alone but when he finally was out of surgery it didn't take a moment for us to recognise his screams. The little boy was in such distress that he was fighting the vice grip of a little nurse who had given up on the idea of a gurney and was trying her best to race him to mommy before he erupted into absolute hysterics (which, by the sounds of things, was more or less achieved at that moment).

Arthur in mom's loving embrace

It took what felt like an eternity to get Arthur settled and the whole time he was sobbing and trying to stammer out all the things that were upsetting him (the blood in his nose, the drip in his hand, the pain in his throat, the loneliness of no mommy or daddy). During that period, while Kat was holding him tight, I yet again experienced the bittersweet emotions of being a dad.

My son was in anguish and there was practically nothing I could do to help him. I wanted to hold him but he wanted his mom. I felt his pain and his fears and I wanted to reassure him but he was in hysterics. I wasn't able to make the pain go away and I wasn't able to stop him crying and every time he let out a wail of misery I felt the full force of that desolation resounding in my soul.

Finally get some time with my little man

It's hard to describe unless you've ever been a father or a parent but for me I both love and hate those moments. I hate them because there's nothing I can do to make the moment less of a nightmare for my child as I share emotionally in each and every desolate moan.

But I also love those moments because it reminds me of a love that I have that I so easily lose sense of during the day-to-day monotony of trying to earn a salary and keep the house afloat. It's also at these moments that I have a brief reminder of what God must have felt like to effectively watch helplessly as his son died on the cross, or how God must feel each and every time one of us does something stupid that hurts or harms ourselves or others in the world. It's a sober reminder of what our love relationship is like between parents and children, and also of just how much God really loves each and every one of us and how massive a sacrifice it must have been for him, the one in total control and with the power to fix anything, to let go of the control and let things take their course...

It's the toughest moments that remind us of why we signed up to be parents in the first place and I wouldn't trade any of it for anything

Brave little Arthur wheeling his little sister out
a few hours after his surgery

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