Finlay has a gastrostomy, a hole into his stomach through which we can feed him. Through his abdomen he has a 'Mickey' button, a short tube that goes into his stomach with a valve on the outside that sits against his tummy that we can attach a feeding tube whenever he needs feeding. On the stomach side of this button is a small balloon that is inflated with water to secure the tube and stop it falling out.
Tonight I was checking the water in the balloon by drawing it out with a syringe and replacing with some fresh water. Cameron, 8yo, was watching and starting asking what I was doing. Although he's seen the tube in daily use I can't remember if we've ever explained exactly how it works. So I explained about the ballon inside his stomach that I was inflating with the water.
"Cool!"
I suppose for an 8yo boy that would sound pretty cool. TBH it still quite amazes me.
Then Cameron turns to Finlay and says "Hey, Bubbleman...." I probably shouldn't approve but then Finlay found it funny and the boys started gently teasing him about being Bubbleman which had him in hysterics. Great to see all the boys getting on well and having fun with Finlay's condition.
Night night, Bubbleman!
Sunday, August 28, 2011
Saturday, August 13, 2011
Another not-so-normal day
Finlay's condition brings up scenarios that just don't happen to other parents. Sometimes funny, sometimes not. A couple of examples in the last few days.
I was dropping the brothers off at school before taking Finlay to preschool. I was getting Finlay out of the child seat on the back of my bike when all of a sudden he starts screaming. I look down and see the pump lying in the seat with the tubing and the site. Somehow his pump got caught in the seat and I've pulled the site out of his thigh as I've taken him out the seat.
I notice a bit of blood in the cannula of the site then look down at Finlay's leg and see a patch of red coming through his pants. We must have caught a little blood vessel as the blood is oozing down his leg. So there I am outside the school gates with a screaming toddler, pants round his ankles (remember it's winter in NZ now and it's freezing in the morning), a stream of blood down his leg and me desperately clawing through my bag for a tissue to stem the bleeding.
A couple of the mum's stop to ask if they can help. "Oh no. Thanks but we're fine." WHAT?? How is this fine? How is this normal? What am I saying??
But the reality is we deal with all sorts of mishaps like this all the time. This is our normal. I knew that it was just a needle hole and it would stop bleeding in a minute. I knew that Finlay was just crying from the initial pain of the site being ripped out. He isn't fazed by blood. He sees his own many times a day. In a minute he would be happily running around after his brothers. To be honest, I was more concerned about the blood on his pants. More frustrated that I was going to have to go back home and get another site. Late for work again!
Are my priorities all wrong there? Probably. But that's our reality. Finlay was great. Recovered in a flash and didn't make a sound as I put the new site in. What a star for a three-year-old.
Then, on a lighter note....
At preschool we take in bottles of a special prescription drink for him to have at mealtimes, packed with goodies to try and beef him up a bit. And with every meal he is given replacement enzymes that his pancreas would have produced had he had one. So every so often the preschool remind us to bring some more in.
So a few days ago alongside the other messages, "more nappies for Johnny", "spare clothes for Olivia" is "Finlay - drink and drugs"!
I hope there were no inspectors from the education department around!
I was dropping the brothers off at school before taking Finlay to preschool. I was getting Finlay out of the child seat on the back of my bike when all of a sudden he starts screaming. I look down and see the pump lying in the seat with the tubing and the site. Somehow his pump got caught in the seat and I've pulled the site out of his thigh as I've taken him out the seat.
I notice a bit of blood in the cannula of the site then look down at Finlay's leg and see a patch of red coming through his pants. We must have caught a little blood vessel as the blood is oozing down his leg. So there I am outside the school gates with a screaming toddler, pants round his ankles (remember it's winter in NZ now and it's freezing in the morning), a stream of blood down his leg and me desperately clawing through my bag for a tissue to stem the bleeding.
A couple of the mum's stop to ask if they can help. "Oh no. Thanks but we're fine." WHAT?? How is this fine? How is this normal? What am I saying??
But the reality is we deal with all sorts of mishaps like this all the time. This is our normal. I knew that it was just a needle hole and it would stop bleeding in a minute. I knew that Finlay was just crying from the initial pain of the site being ripped out. He isn't fazed by blood. He sees his own many times a day. In a minute he would be happily running around after his brothers. To be honest, I was more concerned about the blood on his pants. More frustrated that I was going to have to go back home and get another site. Late for work again!
Are my priorities all wrong there? Probably. But that's our reality. Finlay was great. Recovered in a flash and didn't make a sound as I put the new site in. What a star for a three-year-old.
Then, on a lighter note....
At preschool we take in bottles of a special prescription drink for him to have at mealtimes, packed with goodies to try and beef him up a bit. And with every meal he is given replacement enzymes that his pancreas would have produced had he had one. So every so often the preschool remind us to bring some more in.
So a few days ago alongside the other messages, "more nappies for Johnny", "spare clothes for Olivia" is "Finlay - drink and drugs"!
I hope there were no inspectors from the education department around!
Tuesday, August 2, 2011
The Long Haul
I haven't posted for a while but with good reason. We took a 4 week holiday, the first time we've been overseas together for 6 years. Now Finlay has flown before but only hour long flights to and from Auckland for his heart op and when he was born.
The trouble with New Zealand is when you want to go to another country it's always a long journey. And with Finlay there's the diabetes to think about: the time zones, the feeding regime, the insulin.....
So rather than try a quick jump across to Australia or one of the South Pacific islands we go all out with 30+ hours, 12,000 miles, 4 flights and 12 time zones. NZ to UK. How would we manage this? Not even Dr Google could help out here. Plenty on single flights and a few time zones but nothing about multiple flights halfway round the globe.
So for anyone else thinking about it here's what we did.
Plenty of planning ahead: Insurance took a while but I'll save that for another post. Letter (+ copies) from the endo so we could get the pump, syringes, medication past security. Letters (+copies) from the dietitian so we could get his feeding pump and lots of bottles of Nutrini feed on with us and 6 cases of bottles in the hold. Organise to pick up an extra month's supplies from the hospital so we didn't run out half way through the holiday. Get extra prescriptions of pancreatic enzymes (the pharmacy had me sign a waiver as the computer flagged that I'd only just picked up a previous script. I have to say if I was going to OD on something I doubt I'd choose pancreatic enzymes and I don't think their street value would let me retire early).
Then there's packing his bag for the flight.First of all, a bag isn't going to do it. This was going to take a small suitcase. Enough bottles of Nutrini to get him through 4 flights, plus an extra couple in case of delays, then an extra couple in case of spillages. Feeding pump (too big for suitcase); bottle for feeding pump; 2 feeding sets for 2 days travel plus extra one just in case; gastrostomy tube; spare gastrostomy tube; spare gastrostomy button; lubricant for inserting button; infusion site; alcohol wipes; pimafucort tube for old insertion site; plaster for stopping pimafucort getting all over clothes; spare insulin vial; daytime pancreatic enzymes; nighttime pancreatic enzymes; apple puree for feeding the daytime enzymes; 10ml syringes for nighttime enzymes, 50ml syringes for feed; glucometer; spare battery for glucometer; spare battery for insulin pump; extra box of test strips; hypo gels; extra hypo gels; sod it, just throw a box of gels in!; glucagon, extra glucagon (unlikely to need glucagon at all but if we took one then needed it in the departure lounge in NZ then we'd have 30+ hours without any).
We just about managed to cram it into a small suitcase. Security were very different in different countries. NZ and Australia were pretty laid back about it, Dubai were fairly indifferent, Bangkok were quite strict and had a good rummage around and at London they made me open one of the bottles of Nutrini and drink some (horrible stuff!! I thought my grimacing face might lead to a full body search) then they swabbed his insulin pump for explosives. But all done in a friendly manner.
So what about the insulin regime? First, we disconnected the pump during each take off and landing. Our diabetes nurse sent us a powerpoint presentation about insulin pumps on flights and how the change in pressure can lead to extra insulin being given as the pump is a closed system where the pressure will remain high whereas the cabin pressure would drop leading to extra insulin being delivered because of this pressure difference. With Finlay being so small an unexpected dose like this could cause problems. This worked well and we only forgot to disconnect once. Oops!
Finlay and Ewan enjoying the flight
As for the rest of the time we didn't really know how he'd react to the time changes, the excitement of the trip etc. We had one long night on the way out as we flew west, then two short nights on the return as we flew east. We had no idea what that was going to do to his numbers. Vicky did a chart with all the flights on and planned feeding times then five rows each with the time at one airport, hour by hour. All very organised. We wanted to be fairly conservative with the insulin. So we dropped the basal rates to the lowest setting and gave larger boluses with meals.
And it worked really well. His figures were generally in single figures or just a bit higher. Probably better than normal. We should fly more often! We only had one hypo episode when the plane was a little late arriving in Australia on the way back which messed our timings about a bit. I thought he'd be OK until we got into the terminal but I tested him as we were taxiing and he was LO. No symptoms!! But a quick tube of gel and a feed on the plane as the cleaners were trying to work around us and all was well. By the way, a great way to get through security quickly is to have your kid have a hypo when you land then they whisk you straight past the queues and rush you right through to your departure gate. I think they were trying to get rid of us before anything serious happened!
All in all it went much more smoothly than we had hoped. We were really worried that we'd be awake the entire journey testing him every half hour but it turned out really well. All three kids behaved themselves. No meltdowns on board. Not from our kids anyway! Didn't get much sleep but that would be asking too much.
It gives us real confidence about doing more in the future. A bit of planning and staying calm and all should be ok.
And the holiday was great!
Finlay inspecting the cannons at Edinburgh Castle
The trouble with New Zealand is when you want to go to another country it's always a long journey. And with Finlay there's the diabetes to think about: the time zones, the feeding regime, the insulin.....
So rather than try a quick jump across to Australia or one of the South Pacific islands we go all out with 30+ hours, 12,000 miles, 4 flights and 12 time zones. NZ to UK. How would we manage this? Not even Dr Google could help out here. Plenty on single flights and a few time zones but nothing about multiple flights halfway round the globe.
So for anyone else thinking about it here's what we did.
Plenty of planning ahead: Insurance took a while but I'll save that for another post. Letter (+ copies) from the endo so we could get the pump, syringes, medication past security. Letters (+copies) from the dietitian so we could get his feeding pump and lots of bottles of Nutrini feed on with us and 6 cases of bottles in the hold. Organise to pick up an extra month's supplies from the hospital so we didn't run out half way through the holiday. Get extra prescriptions of pancreatic enzymes (the pharmacy had me sign a waiver as the computer flagged that I'd only just picked up a previous script. I have to say if I was going to OD on something I doubt I'd choose pancreatic enzymes and I don't think their street value would let me retire early).
Then there's packing his bag for the flight.First of all, a bag isn't going to do it. This was going to take a small suitcase. Enough bottles of Nutrini to get him through 4 flights, plus an extra couple in case of delays, then an extra couple in case of spillages. Feeding pump (too big for suitcase); bottle for feeding pump; 2 feeding sets for 2 days travel plus extra one just in case; gastrostomy tube; spare gastrostomy tube; spare gastrostomy button; lubricant for inserting button; infusion site; alcohol wipes; pimafucort tube for old insertion site; plaster for stopping pimafucort getting all over clothes; spare insulin vial; daytime pancreatic enzymes; nighttime pancreatic enzymes; apple puree for feeding the daytime enzymes; 10ml syringes for nighttime enzymes, 50ml syringes for feed; glucometer; spare battery for glucometer; spare battery for insulin pump; extra box of test strips; hypo gels; extra hypo gels; sod it, just throw a box of gels in!; glucagon, extra glucagon (unlikely to need glucagon at all but if we took one then needed it in the departure lounge in NZ then we'd have 30+ hours without any).
We just about managed to cram it into a small suitcase. Security were very different in different countries. NZ and Australia were pretty laid back about it, Dubai were fairly indifferent, Bangkok were quite strict and had a good rummage around and at London they made me open one of the bottles of Nutrini and drink some (horrible stuff!! I thought my grimacing face might lead to a full body search) then they swabbed his insulin pump for explosives. But all done in a friendly manner.
So what about the insulin regime? First, we disconnected the pump during each take off and landing. Our diabetes nurse sent us a powerpoint presentation about insulin pumps on flights and how the change in pressure can lead to extra insulin being given as the pump is a closed system where the pressure will remain high whereas the cabin pressure would drop leading to extra insulin being delivered because of this pressure difference. With Finlay being so small an unexpected dose like this could cause problems. This worked well and we only forgot to disconnect once. Oops!
Finlay and Ewan enjoying the flight
As for the rest of the time we didn't really know how he'd react to the time changes, the excitement of the trip etc. We had one long night on the way out as we flew west, then two short nights on the return as we flew east. We had no idea what that was going to do to his numbers. Vicky did a chart with all the flights on and planned feeding times then five rows each with the time at one airport, hour by hour. All very organised. We wanted to be fairly conservative with the insulin. So we dropped the basal rates to the lowest setting and gave larger boluses with meals.
And it worked really well. His figures were generally in single figures or just a bit higher. Probably better than normal. We should fly more often! We only had one hypo episode when the plane was a little late arriving in Australia on the way back which messed our timings about a bit. I thought he'd be OK until we got into the terminal but I tested him as we were taxiing and he was LO. No symptoms!! But a quick tube of gel and a feed on the plane as the cleaners were trying to work around us and all was well. By the way, a great way to get through security quickly is to have your kid have a hypo when you land then they whisk you straight past the queues and rush you right through to your departure gate. I think they were trying to get rid of us before anything serious happened!
All in all it went much more smoothly than we had hoped. We were really worried that we'd be awake the entire journey testing him every half hour but it turned out really well. All three kids behaved themselves. No meltdowns on board. Not from our kids anyway! Didn't get much sleep but that would be asking too much.
It gives us real confidence about doing more in the future. A bit of planning and staying calm and all should be ok.
And the holiday was great!
Finlay inspecting the cannons at Edinburgh Castle
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