In just a few days, Son will be able to take off his ‘corset’ (spinal brace), because it’s now over three months since he had the scoliosis operation.
He will then have to develop a better sense of fashion!
Even more determination
Husband is coming home for Easter and I am determined to make this work which could be a bit of a challenge. You see it isn’t only the dogs and birds who are presenting me with a compatibility problem, it’s also the fact that Son’s relationship with Husband is fraught with tension. With both of my ‘boys’ incapacitated, Husband permanently with Parkinson’s, and Son temporarily with the post-surgical back brace, my attention is divided and the 3-way dynamics sometimes resemble a comic strip with me as the punchline.
Yes, indeed, sometimes three is literally a crowd, so, even though he doesn’t know this yet, Son is going to Grandma’s for a couple of days so that I can give Husband my undivided attention. Well, not quite as I am not really into doing the doting wife thing so Husband would find that a bit alarming, but I will try!
I’ve been training the guinnea fowl into a welcoming party and they are doing very well.
Too much information
A couple of people were curious about the pigmentation I mentioned in yesterday’s post (pre-surgery, we were told that Son had a couple of tell-tale ‘spots’ that were warning signs of scoliosis). Anyway, he allowed me to take a photo of the biggest of these which is on the inside of one of his elbows. He has a couple more of these elsewhere.
I remember now that they told us these were ‘cafe au lait’ spots. Okay so I looked it all up and found this site which I wish I hadn’t because, if the information is correct, it means that Son has this neuro-whatever condition which may have come from me. After all I’m the one with the freckles!
http://www.ncbi.nlm.nih.gov/pubmed/819447
Argh!
Before and after
I suddenly realized that I have some useful, newfound knowledge to impart and that it may be helpful, so here it is.
At our first visit to the surgeon who performed Son’s scoliosis surgery, several student doctors were invited into the room to have a look at him because he was a bit of an unusual ‘case’. This was two years ago when Son was 16 and the reason he seemed unusual was that, with his shirt on, it wasn’t at all obvious that anything was wrong with his back. So, when he took his shirt off, the student doctors were taken aback to see such a pronounced curve. They circled him as he stood like a side-show exhibit, then someone drew attention to the inside of his elbow where there is a rather large brown patch of pigmentation, like a small birthmark or a big freckle. He was then ‘searched’ for more of these (if they’d asked me, I could have told them he had another one above his hip). We were then told that this is a warning sign for scoliosis.
Now who would ever know that? That’s why I’m posting this – in case you have children or teenagers with this kind of pigmentation. I’m sorry I haven’t presented research links here, but it’s easy enough to find on the internet.
My other bit of useful information is this: the longterm after-effects of general anaesthesia, and pain medication, can play havoc with the brain, especially after major surgery. Son was under anaesthetic for several hours and then on morphine-based painkillers for several weeks. It is now six weeks since his surgery and two weeks since he took his last painkiller. He is 90% his usual, adorable self, 5% his usual unadorable self and 5% a hound from hell who I’ve never met before. In fact, even Son admits to never having met this 5% of himself.
So, the other day, when we met with the surgeon for our first post-op. appointment, one of our many questions was to do with whether Son’s hound-from-hellish moods were attributable to the anaesthetic and subsequent drugs and the answer was yes, and that it might take several more weeks for his brain to recover from the onslaught.
Now who would ever know that either? The miraculous surgery and Son’s incredibly fast recovery – all so wonderful – has been somewhat tainted by that hound from hell but at least we now know that this hound will soon go away and that is an enormous relief!
Little crushes
I find myself having little crushes on the various medical practitioners who have helped us over the last few months. I’m sure this is quite normal and is a passing phase, but I would still like to buy the doctor who visits Husband in the nursing lodge a big bouquet of flowers (since I can’t grow any). And today, when Son and I saw his surgeon for the first time since the scoliosis operation, I could hardly stop myself from flinging my arms around him. The before-and-after pictures of Son’s spinal x-rays will show you why I feel such overwhelming gratitude.
Perhaps I should simply pay the doctors’ bills. That should eradicate the little crush problem I have; actually it already has!
‘This is your life’
A few final moonflowers popped up this morning, but I think they are now finished for the year. How would I know? I got it wrong before!
After a lengthy appointment this morning, to get Son’s post-surgery dressing changed by a nurse and his wound examined by our doctor, we went to visit Husband in the nursing lodge. Son was in his back brace and the pain had kicked in again so he took one of his pills before seeing Husband. I filled Husband in on the latest details about Son’s next few months of convalescence – the physiotherapy he would need, the fact that he isn’t allowed to lift even two kilos, his moody frustration and so on. Husband wanted to come home to help and I had to explain that this wouldn’t help, that it would make things harder as I would have two invalids to look after (yeah, sometimes my words don’t come out the way I intend them to).
Apparently Son will never be able to do this again:
Husband insisted on walking us out to the car even though he was quite wobbly. As we drove off, I saw him in the rear vision mirror, standing in parking lot, leaning on his walking stick looking so forlorn I wanted to reverse the car and rescue him, bring him home, but I couldn’t because by then Son’s pain was so bad he needed to lie down, so I had to rush home. I was crying (which Son says I do too much of) because I had forgotten to harden my heart.
Okay, so one of the things that has been said to me by my beautiful friends and family is this: “Soon you will get your life back. It will get better.” Now, whilst I agree with the latter, I don’t understand the former because this IS my life and Husband and Son ARE my life. Yes, I have my writing, the birds, my connection to the local university and many other joys, including this blog, and Husband and Son have never made me feel guilty for the time I spend writing. Bravo to them.
You know what I miss most? Sitting out on the front veranda with Husband and Son and chatting together every evening as the sun went down. We didn’t do this often enough in the recent months as Husband’s Parkinson’s disease got the better of him, but those conversations were the best! I don’t want a future without Husband here, but I know that he and I both have to adjust to that reality. And I don’t want a future without Son’s company but, once his spine is completely healed, he will inevitably leave to pursue his many dreams. Yeah, I know I’ve already posted this photo but this is the three of us back in 2009 when things were okay-ish.
Soon it will just be the birds and me.
This is my life and, despite the difficult, sad bits, every single micro-second with Husband and Son has been joy.
I don’t want any other life!
‘The look’
Here is ‘the look’:
‘The look’ represents many things and can be very difficult to interpret at times. For example, ‘the look’ can look like determination or courage, but it can also look like melancholy or resignation.
I didn’t take this photo of Son before his surgery; someone else did, however today I have been the lucky (ha!) recipient of just such a look, but this time ‘the look’ looked like rage or frustration. Fortunately I was ready for today’s fall from the great heights of elation, so our spat was relatively short-lived and bandaged with an awkward hug (it’s hard to hug a plastic corset), so all is well again.
Navigating the hills and valleys of our next few weeks is going to be tricky. Son’s corset thing is very restricting and he has to wear it all the time, except during the night when he sleeps. Today, full of energy, he wanted to do some of his usual outside jobs, but he couldn’t; he couldn’t even lift the bucket of water that he’d managed for fill for the dogs.
I think it might be awhile before we all see another ‘look’ from Son. The following photo was also taken before his surgery.
I will watch and wait for this other ‘look’ for as long as it takes….
Tomorrow just became today!
I think there might be a funny story within this situation, but I haven’t quite found it yet.
This afternoon I found out, almost by accident (during a phonecall with Son), that he could be discharged from the hospital today. I immediately rang the hospital to confirm this and said I’d be there first thing tomorrow morning, explaining that I lived 200 kms away. But the woman on the phone said it had to be today because they needed the bed.
Okay….
In the meantime I’d received a phonecall from our local hospital to say that they would be delivering a special chair and other equipment for Son this afternoon and would I be home … okay
Long story short, I then rather frantically had to arrange for relatives in Perth to pick Son up and have him overnight, cancel my planned visit to Husband, confirm delivery of Son’s equipment (which, as it turns out, can’t be delivered until tomorrow anyway).
Okay….
So, our wonderful relatives are now bringing Son home tomorrow morning. As he can only tolerate sitting for about 15 minutes without pain, I think this may be a long journey.
Previously I’d been told Son would probably be in the rehabilitation unit until next Monday, maybe this Friday at a pinch, but only if he made a quick recovery.
Well, he made a quick recovery all right – it’s only Thursday!
I feel a little sped up!
So home tomorrow … the beginning of a new adventure – hehe!
It’ll be Son and me and a bunch of birds; wish us luck as we let the funny story unfold!
Flexibility
Geese, with their long necks, have incredible flexibility. In the photo below, Pearl (on the left), appears to be giving herself a little hug!
The biggest drawback after scoliosis surgery is loss of flexibility. Son has had 12 of his 24 vertebrae fused, so this area of his back is now ramrod solid. The good news is that this middle area of the spine doesn’t require much flexibility anyway and Son still has the top and bottom of his spine to flex, dance, bend, lift, so he still has his shoulders and hips. If he wanted to, he could even preen himself the way Seli does in the following photo.
I love watching the geese preen themselves. This is Godfrey and Seli below. As you can see, Seli does actually have a head!
Okay, so Son is not a goose, but he will still be dancing, preening and spreading his wings again!
Okay, so he might not have as much flexibility as Pearl (picture below again) but you never know!
Twisted
One of the so-called professionals, who helped measure Son for this spinal jacket today (it’s like a brace/splint thing that he has to wear for three months), also told him the following:
- that the muscles around his spinal fusion would stop working;
- that he wouldn’t be able to go to the concert he has been hanging out for;
- that he should stop riding his motorbike permanently;
- that his spine was still twisted;
- that we would have an appointment with the surgeon in a month’s time;
- that he should stop doing anything strenuous;
- that he should never play any contact sport, even for fun;
- that his spine was still twisted;
- that he would have trouble with his back as he got older;
- that he would need physiotherapy forever;
- that he should ask the surgeon any further questions at the appointment;
- that his spine was still twisted
I arrived at the hospital just after this incident and, as soon as Son saw me, he began to cry. “I’m a freak,” he said and, lying on his back, the tears dripped into his pillow until I found a tissue, after which the pillow got soaked.
So, holding his hand, I decided to contradict every single thing that so-called professional said, and I told Son this:
- that the muscles around his spinal fusion would keep working;
- that he would be able to go to the concert he has been hanging out for;
- that he should keep riding his motorbike permanently;
- that his spine was untwisted;
- that we would ring the surgeon before a month’s time;
- that he should lift weights;
- that he should have fun;
- that his spine was untwisted;
- that he would never have trouble with his back as he got older;
- that he would need physiotherapy for a short time only;
- that he should ask the surgeon all of his questions at the appointment;
- that his spine was untwisted
When I find out who that twisted, so-called professional was (not easy in the whirlwind world of a hospital), I will politely ask her to shut up before she wreaks havoc on any other kids’ dreams.
jmgoyder 