No news is good news

I’ve been tackled on the ‘lack of updates’ after the frenetic pace of last weeks blogging, and I guess the truth is that life is back to normal. What that means, if it’s unclear between the lines, is that I have practically no time again. Work is consuming a lot of my energy, and with Jamie back up to his usual antics, home-life isn’t particularly relaxed either. I’m also being plagued by an extremely petulant computer at home, which is causing me significant pain.

Anyway, myself aside, Jan tells me she’s not feeling great today – home for the week to look after the patient. Hopefully he manages to fend off whatever ailment has got her. He’s charging around like a bull, spent a good portion of yesterday outside with us, and generally back into his routine. His cut appears to be healing nicely, and it just continues to blow our minds that this time last week he’d only just come out of ICU. Really amazing.

Anyway, point is this – I’ll be doing my best to keep stuff happening here, but for now, take it that no news is good news!

That lived-in look…

The house has it again. Doors flung open, empty coffee cups, toys strewn all over, signs-of-life! We’ve been trying to adapt to our home routine again, and Jamie’s been a champ in that regard. He’s sore, and it’s quite evident when he needs the painkillers, but he’s been pretty good at sleeping through the night and fitting back into things. He’s still a bit insecure and doesn’t like being left alone, but he’s starting to venture away from us again, which is a good sign.

He’s sort of quarantined from the outside in for the next few weeks, obviously in a germ-control way, so we’ll probably be keeping a fairly low-profile too, which won’t be a bad thing. It’ll give me lots of time to wrestle the !*#$ out of my stupid computer at home and hopefully get it back to a point of usefulness. It’s been really frustrating not being able to edit video etc, and I’m aiming to get that sorted this weekend. Hoping for a bullseye. Have a nice weekend… I know I’m going to!

Jamie’s Surgery: Day 8

Home-sweet-home! Yip, he’s being discharged this morning! Relief wells up in me having been convinced that he was actually disadvantaged by the hectic lack-of-order and continual stimulation of the children’s ward. Jan is already with him, having braved another early start to the day. I’ll go through in the next hour to assist with… um, well, I don’t know – bags and stuff. And probably the credit-card. EEEK.

I’ll pop some photos up later of his homecoming – I’m sure his nanny is going to be thrilled out of her mind when he makes his surprise arrival.

Update: And indeed she was. He promptly fell asleep in the car on the way home, and will probably take a good while to catch-up. He’s got a huge bag of medicines to get through in the next few weeks, and will see the surgeon again next week. For now, he seems content with rediscovering his house, digging through toys he’d forgotten and remembering his ‘normal’ life…

And er: I’m guessing some of the more recent visitors to this site will again retreat into the shadows, the action subsiding, so before you go let me thank you for visiting/following this online!

Jamie’s Surgery: Day 7

No big news yet, just to say that he’s had a good night, and was wired when I phoned Jan earlier. She didn’t sleep there, but drove through at about 6am. Hmmm… imagine him being wired…?!

Evening Update: We kicked England’s ass. That was fun. Certainly made a rather slow and difficult evening pass quicker. I suspect Jamie’s cut is hurting now, as the painkiller dosages have been slowly dropping off. It’s also my theory that his trust in people has now been depleted, as he spent the entire day (Jan there for about 14 hours) very clingy and mom-verskrik. Even Dad couldn’t markedly improve the situation, and apparently he just cried everytime nurses-with-stuff approach. He cheered up after some happy-medicine at about 7, but his schedule is so completely train-wrecked that he was still bouncing off the walls at 9, and when we eventually threw in the towel and went home, he was w-i-d-e awake.

Jamie’s Surgery: Day 6

Back to work this morning, accounting for a lack of promptness with this update. We called the hospital this morning to hear that he was wide awake and cheerful after another good night. He’ll definitely be returning to the children’s ward later today, which means an end to all the pipes. Good news for sure.

Janet is in Town with him this morning and sends news of him High-fiving her, playing happily, and talking merrily. Heartwarming stuff for sure. I’ll go through later and join them. She’ll also be staying for the next few nights in the ward, which is bound to be a real drain on her. Sleep is unlikely, so we’ll have to see how that all goes.

Nearly-midnight update: I cracked at 2pm and left work. Arrived just after Jamie’d been moved to the children’s ward, and got a huge grin on arrival. Oh, and one from Janet – a grin whose twitchy corners implied strain and weariness and general fatigue. Jamie’s grandpa, other gran and aunty all came to visit, and relieved us at different stages during the afternoon while we both vegged in the cafe downstairs. Now that there’s no longer a full-time nurse at his beck-and-call, we’re expected to be on-hand to keep him happy – an overtime exercise with Jamie.

Anyway, this is all banter around the fact that he’s doing fabulously. He was WAY too active to believe, and was again dosed up in an effort to calm him down. The best comment of the day came from a night-shift nurse who asked “When is he going in for his operation”. The gasp was audible as I pulled his t-shirt up and showed the past-tense which applied to her question. Truly, his energy, stamina and willpower are just damn impressive. He was still going long after 8pm, holding onto the rails of his cot, but with his feet outside standing on the bedside table, all performed while unscrewing the various gas-feeds on standby next to his cot. It is nothing short of a miracle that he’s as healthy as he is, this soon after such a major op – God be praised!

Anyway, I fear the routine of a work-week approaching, and suspect that my surreal occupation of the hospital will start diminishing. Not that I’m altogether unhappy at the prospect of NOT hearing a choir of very miserable, screaming children all day long. I am well aware that ours could be worse off, but thankfully he’s not, and nothing tears at the soul like crying other-people’s children! Even Jan opted to come home tonight in a bid to sleep, and will return very early tomorrow morning. Many thanks to those who’ve been leaving comments – they’ve all been read and appreciated!

Jamie’s Surgery: Day 5

Midday update: An early call to the ward this morning told us that he’d had a good night. We arrived here about 10:30, found him awake and chirpy, although tired. It’s quite obvious the nurses have a soft spot for him, which is reassuring for us. His scar is not as covered today, so it’s quite a shock seeing it everytime we look at him. The fact that it (and most of him on account of his wriggling) is painted with bright-red merchurachrome is also a little offputting! It’s been confirmed that he’ll spend tonight in ICU, which we’re pleased about since it’s an extra day of personal attention. His lungs are looking much better today, and all things are going well. More later…

Later: OK, I hesitated to put pictures up here because Jamie’s wound looks a little vile, but I assure you – the red is not blood, the scar is apparently not as large as it looks, and he doesn’t seem to be bothered by it at all – which I’d imagine means it’s not hurting anymore. He was full of smiles this evening, and really back to his completely busy self.

Jamie’s Surgery: Day 4

Evening cell update: We’re still in ICU with Jamie, but just to say that more tubes are out, and he’s looking more comfortable. He’s off the morphine – just antibiotics now through his neck tube. He was back on the oxygen this morning after his forced removal of last night, albeit mainly for protocol’s sake. We’ve just come from the Waterfront after wandering around for an hour looking for something we actually felt like eating. So we’ll be here for a while, watching NZ wipe us out, and I’ll put some pictures and more info up once home.

Having returned home, we can say that he’s doing nicely. Again, sleep beckons, and I don’t think it’s worth staying up for the cricket, so shouldn’t be long now. As an aside, I decided I needed to pick a new driver this year for F1 since Montoya’s exit, and opted to support the fresh-from-GP2 sensation, Lewis Hamilton. Seems to have been a prudent choice, and it’s nice to see some competition at the sharp end of the grid. Hopefully I get to find a telly showing the race tomorrow…

Jamie’s Surgery: Day 4

Midday update: Jamie’s doing OK today, his drainage tubes were removed about an hour ago – apparently a rather painful experience. He’s down to about 4 pipes and 5 wires, so he’s getting there. He’s been sleeping a lot, and according to the cardiologist is showing signs of a slight chest infection. It’s not good news, but not serious, and they’re waiting on pathology for more information. He’s already on preventative antibiotics, so it shouldn’t develop, and is apparently very normal post-op, but still – it’s unwelcome!
We’re going to get some lunch now, so more news later. Just to be clear, he’s still doing well, and has just woken with his familiar little greeting-sound! A nice thing to hear…

Jamie’s Surgery: Day 4

Morning update: We’re returning to the hospital soon, having phoned in at 7am this morning. He had a restless night, but is apparently doing very well. We’re looking forward to the day as the drain tubes should be removed too (which are currently stitched to the cut, and are draining post-op fluids from the chest cavity), reducing the risk of him rolling-on and pulling them, damaging the wound. Check later for news…

Jamie’s Surgery: Day 3

(still mostly asleep, but from habit grabbed his bottle from us and enjoyed first milk)

Promised full update: Today was pretty tiring – to be sure. I’ve dotted two little cellphone updates during the day, so part of the news has been spilt, but the essence is that he’s doing well. Our concerns proved to be sound in that – knowing this little character – we were doubtful that the sedatives would be as effective as usual. In the aftermath of this evening’s could-only-have-been-painful wrestling match with Jan and two nurses (during which, under the ‘heavy sedation’ and restraints, he decided his nasal tubes had to go…), we’re left a little concerned that his never-say-die approach to life is going to be to his detriment as he recovers from what is obviously quite major surgery. His Cardiologist suggests that children self-regulate their movements based on the pain, but our experience shows that J has a fairly unusual pain-threshold. We’ll have to wait and see.

Other than that – something which may be of interest which I meant to pop into last-nights update is the following: Jamie’s pre-op Sp02 (which in layman’s terms is a measure of the oxygenation of the blood) was somewhere around low 80%’s. From the little reading I’ve done, that’s generally considered quite low, and usually requiring additional oxygen. Obviously he’s been used to this all his life, so he’s been fine, and anyone can attribute he’s certainly not been short of energy. His post-op Sp02 was 97%, and had climbed to 100% by the evening. I asked whether that was as a result of the operation, or the fact that he was on additional oxygen as part of his ventilation mixture, and was assured that since he was receiving very little additional oxygen, the marked increase in saturation was directly because of the closed atrial hole and the consequent correction of old blood mixing (diluting) the new blood. Quite incredible! Of course, reading between the lines, we’re pipping ourselves thinking of him having any MORE energy/stamina/musclepower – something we’ve been told will be the case. Jamie, more active? Eish!

OK. Enough speculation. More facts. Jan and I escaped the confines of the hospital early afternoon and wandered around town – again visiting the Gardens, Longmarket square (where we were acosted as tourists and fell unwittingly into their retail traps! Hehe…) and some curiosity shops. We had some snacks sitting in the Gardens under the watchful eye of the Cable Station, and returned to find our little chap awake for the first time. He had his first milk feed, squirmed around in protest at his immobility, and then fell asleep again. For the sake of continuity, the Quick cellphone update! fits here.

We left again to have supper at the V&A. Nothing culinary to write home about, but sitting at Quay 4 with the gulls and calm autumn evening descending around us reminded us again of the awesome city that we so easily take for granted.

(very woosey, but starting to pipe-up with his inflectioned ‘hmmm?’)

And then, yes. The Another cell update post fits here. After which we returned home, mostly comatose, and sunk into a deep sleep around 9am.

Jamie’s Surgery: Day 3 (Another cell update)

Geewhiz, this boy has oomph! We’re now in a darkened ICU ward, Jan on his bed, sedatives and painkillers flowing around his tummy, all in an attempt to calm him back to sleep. Usually the medicines knock kids out in 5 minutes, he’s going on 25 and still fighting. Despite his hand-restraints, he pulled the oxygen tubes out of his nose, then his nasogastric tube! Slowly calming… Sheesh! Asleep.

Jamie’s Surgery: Day 3 (Quick cellphone update!)

Well, this may or may not work, we’ll see! I’m typing it all with my 123 keys too, so kudos to me! Arrived here about an hour ago, after a quick gym session, and are sitting at the side of his bed in ICU. He’s doing well, having had a good night. Apparently he’ll be more tired and calm today than his op day, and that seems to be the case. Janet’s sitting beading, and I’m journalling/reading/typing. Er, not sure how to do paragraphs!
Aha, solved! Anyway, obviously we’re waiting for him to wake, although when he does we’ll have to avoid letting him see us, as we currently have to with him hearing us talk. Despite the sleep, his blood pressure jumps significantly with recognition, and that puts strain on the repair, so all forms of contact are discouraged.
They’re about to suction his lungs, so I think we’re going to make tracks – apparently very unpleasant for him and us.
Oops, too late. Wasn’t bad at all, and not much to remove, very good sign. Either way, this is getting tiring, so enough for now. A full update later…

Jamie’s Surgery: Day 2 (evening)

Evening update: Past 9pm now, and all going as it should. We took the scenic route back to town earlier, via Hout Bay beach, and arrived sometime around 6. While watching him and chatting to his nurse (own 1:1 attention), he started moving his hands and promptly rolled over onto his stomach. Obviously not a good idea with all the pipes. After telling us she’d need to give him more Valium, she casually mentioned having already given it to him 3 times since the afternoon. We overheard her saying to another nurse “…it just does nothing to this boy”. Definitely Jamie under the sedation!

(His hands are restrained, and the yellow on his stomach is antiseptic, not jaundice!)

After ensuring that guardrails would be put up on either side of his bed, we went and had a homecooked supper Jan had packed. A few distractions later we were back at his bedside, having a nice chat with his new night-shift nurse. She’ll be with him until tomorrow, and for all the nights over the weekend, so we’re very confident he’s in good hands. All his vitals are good, and they’re very pleased with his condition. Not much else to say I guess except we’ve been flooded with support, well-wishes and prayers, and to everyone on this journey with us – you’re really helping! Thanks

Jamie’s Surgery: Day 2

Midday update: He’s OK! Repair was successful, and his vital signs are good and stable. So, if that’s all you wanted to know, you can go now.

Jan had absolutely no sleep last night, not hard to believe in the paediatric ward. I didn’t sleep too well at home either, waking at about 3 and staying so until leaving for town. I got to the hospital just after 6, and as I’d expected they’d already administered the sedation. Thankfully he was still awake, so he drowsied himself to sleep on my shoulder. Quite an emotional feeling knowing that it’s going to be days before he’s awake again.

Jamieboy was taken to the Operating Rooms just after 7, and wheeled into pre-op at 7:20, aiming for an 8am start. Having been encouraged not to hang around, we had breakfast downstairs while waiting for my Dad to join us. Pops and I opted to explore town, and Jan zoned towards a couch to vegitate.

Marion Keyes kept her busy while I enjoyed touristing Cape Town – visiting things which I’m embarrassed to say I haven’t seen – St Georges Cathedral and the Gardens. Dave joined us, and in a quest to find a coffee-outlet (no, I mean an outlet), we found ourselves at the Holocaust Museum. Our peebreak became a tour of the museum, and it was nothing short of deeply moving.

Towards 10:30, starting to get anxious, we made our way back to Jan, and waited for news. At 11:30 I was phoned from down the hall, telling us that he was now in ICU and that we could join him. I think we’d been well prepared, because he was as I expected – a myriad of tubes, pipes, lights and mechanical noises. Dr Vosloo told us that the op went perfectly, all vital signs were strong, and he was stable. We’re discouraged from touching/talking, but it’s not as drastically restricted as we initially were told.

We’re back home now, trying to recover from the physical and emotional exhaustion, but we’ll return tonight. He’ll probably wake sometime tomorrow afternoon, but they’ll keep him heavily sedated for probably most of the weekend. So. We’ll read.

Hope to have more good news soon. Praise be to God!

Jamie’s Surgery: Day 1

I’m absolutely bombed as I write this, having spent the afternoon at Christian Barnard Memorial Hospital. Jamie has been admitted, and is currently on the 12th floor. Janet is staying the night, uncomfortably perched on a stretcher…

We arrived at 13h00, admitted him and then took his stuff to his ward. During the afternoon, he had X-rays, blood-samples, blood-pressures, ECGs and some extra pokes and prods. Being a noisy ward meant that his afternoon sleep was a no-no, and of course he was completely entitled to be a pain. To our general surprise he was extremely compliant, and bless-his-soul, seems to think that this is all a big adventure. Even the needles didn’t bother him, and he smiled at the nurses as they drew the blood!

We met the various people who’ll be attending to him, notably the surgeon and anaethetist. After chatting to them, we have a better idea of what to expect in the next few hours, and weeks:

Tomorrow, I’ll be joining Jan and Jamie at about 6am. He’ll probably already have had a sedative, and they’ll perform whatever pre-pre-op they need to do – antiseptic baths etc, and he may or may not be awake by 7am when they take him into the OR for the pre-op. The surgery is expected to last 3-4 hours, beginning at 8am, and should be finished by lunchtime. Thereafter, he’ll go straight to the ICU, where he’ll be sedated for at least 24hrs, attached to ventilators. As his lung function restores (as a result of the operation), the tubes will gradually be removed, and the sedation eased off until he’s ready for a ward again – probably after 2-3 days. Thereafter, he’s in for another few days in general. Thereafter 4-6 weeks germ-free recovery at home and about 8 weeks recovery for the bone in his chest to repair.

The ICU days are going to be extremely hard, as we’re apparently not allowed physical contact with him, and apart from the visual condition, not being able to touch him is going to suck. Apparently his recognition of voices would be unaffected by the sedation, and in an effort not to excite and therefore increase the blood-pressure through his new circulation system, we’ll not be able to even talk. TOTALLY BLEAK.

Anyway. I’m going to crash now, it’s been a tough day, and surely just a taste of things to come. All the thoughts and prayers we’re receiving are gratefully appreciated!