The Joys of Enteral Feeding and other *wonders

Please sort out our Milk order !

2009-03-05T16:46:00.005Z

Today when we got back from having another wasp sting injection, we were pleased to see that Our Health care providers had delivered as they said they would !
Unfortunately they only delivered 8 night feeds and 12 bottles, so unless they are delivering on a weekly basis, we are still short of our month milk supply.

I think I will leave it in the hands of our dietician, as my blog is popping up on the 1st page of results.

Oops I tripped over Geoffs feeding line

2009-03-03T20:35:00.003Z

I was just sorting out Geoffs pump as it had an air-lock, when I had finished I walked away but unfortunately tripped over Geoffs Feed line.
Which came free with milk pumping out, thinking the worst, I was glad to see it was just the Freka peg and clamp at the end that came off.
This was quickly repaired with a spare freka peg, Geoff did start to get very upset, but I was able to let him know that it wasn't a serious problem.

Nutricia Homeward are Sorry !

2009-03-03T15:05:00.002Z

Well we have heard back from our Dietician and Nutricia homeward are sorry about the mix-up and it won't happen again (mmmmm)
Our full order should be with us on Thursday, well Nutricia couldn't say much else as the dietician had a copy of the fax that was sent in December.

Michael is not Impressed With Nutricia Homeward !

2009-03-03T14:17:00.003Z

Just got back to find our milk and supplies on the doorstep, which is good.
What isn't good is that they still haven't got the milk order right, and what is the point of doing a stock check if they still send pumpsets that I told them I don' t need as I already have a backlog and don't really want to fill the garage up with Nutricia supplies.

So they sent us 8 500ml milk bags which he is supposed to have 1 a night and when I last checked there were more than 8 days in a month.

12 bottles on energy, which he is supposed to have 1 a day, ditto the month thing.

Although it was a pain having to pick up all our milk at the chemist before, at least you usually got what you wanted.

Well hopefully the phone line between our Dietician and Nutricia homeward is buzzing.

Come back Kangaroo.

A Quiet Start to the Year

2009-02-24T11:22:00.003Z

Well quiet for me as I haven't been blogging for a while.
After two week chest infection and half term, we have now got Geoff back into School, though I have had to take him as he wouldn' t go in provided transport.

We still haven't got our correct milk order sorted out with Nurtricia Homeward !
I didn't really notice last month as we had a backlog from month before as we were still using the Paediasure we had.
But some reason, they only have us down for 8 cartons of 500ml for Geoffs night feed for the month, and they won't change it till the dietitian has sent them another fax, what do they do keep loosing the Fax's ?
I only have enough milk now till the next order and then it looks like they are only giving me a weeks supply, no doubt it (fingers crossed) will get sorted, but I'm sure I said that before !

Milk arrived

2008-12-15T21:01:00.002Z

Delivery turned up this afternoon and we now have milk supplied by nutricia, geoffs small rucksack turned up and also the longer pump sets for Geoff's night feed so will be able to say bye bye to Kangaroo now !

All I have to do now is get rid of 7 boxes of 30 kangaroo 500ml bags, which I don't really want to end up in a landfill.

So who are we with Nutricia or Kangaroo ?

2008-12-10T19:46:00.002Z

Still not sorted out on the Nutricia front, and we had our delivery from nutricia yesterday.
Well I say delivery, unfortunately we still haven't received the extension sets or the small backpack and waiting for the milk.
So we still can't feed Geoff at night with the Infinity pump, which means we still have the kangaroo pump for the night feed.
We got home today to find 2 boxes of Kangaroo pump sets at the door, so who should of cancelled them then ? Not us and I already had 5 boxes that I can't get rid of !

Well hopefully the saga will be over soon, if not we will dump the nutricia and go back to Kangaroo....

Where's our Milk !

2008-12-05T22:19:00.003Z

Looks like things aren't going to smooth with us and Nutricia, as they haven't had the prescription so can't give us any milk yet, and our other prescription has been stopped.
Well she said on phone she would get on to it on Monday, as things always go wrong on Fridays don't they !

On the Good front, the School can now use the Infinity pump so I only have to use the Kangaroo pump at night, as we still need the extension sets to use the Infinity, over night.

Geoff is himself getting to grips with the new pump, so I may have to start using the parent lock so that he can't adjust the feeds, as he did once with the Kangaroo and had the night feed in about 2 hours.

I know Geoff wants lots for Christmas, but I hope he has some MILK !

In no way do I blame Nutricia, its just one of those #@#### that we seem to get

How do I get rid of 5 boxes of Kangaroo feed bags ?

Not quite bye bye Kangaroo yet !

2008-11-28T09:30:00.003Z

Well we are still using Kangaroo, even though we have two nice shiny new Infinity pumps, and the reason for this is that.

a) They said they will teach the feeding at Geoffs School and waiting to hear when that will be.

b) We have only been supplied with the mobile pump sets, which are to short to use when Geoff is in bed.

These are just little hiccups which I am sure will be sorted on the next resupply on 9 December, if not before.
We also need the smaller rucksack for Geoff, so that he can wear it on his back if he so wants.
So at the moment we have 4 pumps in the house, and all I can say is I am glad I'm not paying for it.

Oh and remember my post about Calogen bottles, well they are now taking it a lot more seriously, maybe because I am part of their team now .

We have had confirmation about Geoff's New School for next year so that is good news

To Infinity and Beyond

2008-11-25T10:12:00.003Z

Bye Bye Kangaroo, its been nice having you for the last 5 years but things move on and we will now be getting the Infinity pump from Nutricia Homeward.

We will now have all our Milk and syringe needs delivered to us, which hopefully should make things easier, at least it sounds like it should.
Yesterday we were given a run over of the pump by the Nutricia nurse (though I had already been on the web site and used the online test to find out how it works), so now the order will go in and soon we will have to send our Kangaroo pumps back, leaving us with just a few 500ml feed bags to get rid of.
It will be quite nice to be able to connect the milk bag or bottle (bolus feed) directly to pump, and save having to decant the milk into a bag.

Apart from that things have been ongoing, with a visit to a Rheumatology consultant on friday, which is a department we don't have to visit again.

We also recently paid a visit to the next School Geoff maybe attending with its own SNU (special needs unit).
we had been considering keeping Geoff back with his 2 year delay, but seeing the School it seemed more suitable for him.

Wasp and Geoff update

2008-10-08T11:12:00.004+01:00

Well Geoff is back at school though he did have a couple of weeks off, he then got a stoma infection which was treated with Anti-bio tics. He is doing okay now.

Meanwhile I went to see the allergy consultant yesterday, who didn't seem to have the missing A+ E notes yet.
She did a usual checkup, and I was glad that I had good blood pressure (thanks for small mercies lol), and no allergy tests as I thought, what she did was prescribe 2 more Epi-pens as she doesn't think 2 will be enough for me, also soluble steroids and more Anti-histamine as she has doubled my dose to 2 a day.

The Consultant then went through what I should do if/when stung again, which is to immediately use 1 of the epi-pens then if not being sick take some soluble steroids and some piriton, followed by another Epi-pen if the 1st one doesn't work.
Not forgetting calling for an ambulance and then what I shouldn't do, as in no exercise like going up the stairs and no hot showers.

Its funny that the G.P and A+E nurse told me that exercise, hot showers and the fact that I had been stung on the head had no effect on my attack, when in fact the Consultant told me that they had.

I was then given the option of a course of treatment which is Immunotherapy.
This is injection of the wasp sting, starting with a very low dose for me, due to the severity of the attack.
So that will be Injection every week for 12 weeks ( maybe a bit longer for me, so she said), it then goes to every month and then longer periods, that will take about 3 1/2 years to complete.
I believe in the end that they will be injecting me with the sting of 20 wasps, so lets just hope that I don't get stung by 21 wasps !
Obviously I will be going a head with the course of treatment.
Geoff came with us and was able to be the one not getting the treatment, and he also held my hand as I had blood taken.

I HAD A RIDE IN A AMBULANCE

2008-09-04T09:38:00.002+01:00

We were nearly all set to leave for our Holiday at Butlins, but had to pop out and get some money.
On the steps back up to the house a Wasp or Bee landed on my head, It was probably a wasp as they have a nest there, that we haven't managed to get moved yet.
I don't freak when wasps are around and assumed it would fly off my head, but when it started to sting me, I brushed it away and went inside.
Now I was stung about a month ago on my hand and had read something about putting vinegar on a sting and the only vinegar we had in was Balsmic, but I gave it a go anyway.
I had intended to have a quick shower when I got back, so that is what I did, and while in there started to notice the swelling around my head and lips.
On getting out of the shower, I noticed a lot of bumps on my arms, which we later found out were Hives.
It was when I started to feel lightheaded that we thought we should contact NHS Direct, who suggested we get down to the Hopital very quickly, and that is about the extent of my memory of that bit, as I believed I layed down on the floor, where in fact I passed out and gave Imogen the fright of her life.
I came too being attended by a paramedic and was helped to the sofa, where I started to retch, and was given a adrenline injection.
The Ambulance then turned up and the paramedic did his handover of what he had done, and I was then able to walk down to the Ambulance and we set off for the short journey to the Hospital with Imogen and Geoff.
I continued to Retch in the Ambulance and was given another Adrenline Injection as I believe my Sats were dropping.
At Hospital I was taken straight into resuscitation A + E and was given something to counteract all the Adrenline I had been given. I did have a small relapse where I started to feel faint again and was told that the Hives had come up again on my legs.
I started to feel really cold at one stage, with my teeth chattering, which I initially put down to me only wearing shorts, but was told it was the bodys reaction to shock.
I was finally well enough to be transfered to a observation ward, and was told I would have to be there for 4 hours, so that was putting a slight delay on getting away on Holiday.
I was eventually able to get out of Hospital at 1700hrs, and feeling quite well we soon set off to Butlins.

Imogens side of the story starts where I thought I was laying down after the phone call to NHS Direct, Where in fact I was still sitting upright and stopped breathing and she was unable to get me to lay down to get in recovery position.
Even though Imogen asked for an ambulance, they mistakenly put her through to the Police at first. I am told Geoff ran upstairs to Megans room and layed there crying having found out that I am not Invincible.
I now have two Epipens to carry around, and am awaiting an appointment for allergy tests.

ENT appointment

2008-08-13T22:49:00.002+01:00

Well this is the appointment we should of had on the same day as Geoff's School sports day, but we believed the sports-day was important to him !
We arrived too early in London and so visited the goats before the Hospital, and we still had a while to wait.

The Consultant we saw was one we hadn't seen before, but he seemed to have taken the time to read Geoff's notes, and though he said the problem is now a Resperiatory one, he also said that we are moving in Circles but at least they are ever decreasing circles.
Which I suppose is good, well a lot better than 'the cubboard is bare', which we were told many moons ago.

We were given the results of Geoff's sleep study he had, and though the Obstructive apnea didn't appear on it, he still had 30 odd central apnea Breath stopping moments !
So next week we have a appointment with the Respiratory Consultant and will see what they say. . .

Now back to the School Summer Holiday and keeping the kids amused.

Geoff's 1st School Sports Day

2008-07-19T22:05:00.005+01:00

*Having a problem with Google video at moment, so trying Yahoo video and am waiting for it to process.

We had the pleasure of going to Geoff's 1st sports day last week, and it turned out quite a hot day as both Imogen and I got sun burnt.
Here is a video of the day, that I have edited together, its 8 minutes long just to warn you.

EEEk I sent Geoff to School with no Syringes

2008-07-09T23:01:00.002+01:00

We had a phone call from the School at 1115hrs today, naturaly we thought something was up with Geoff.
Not quite, as the problem was quite different, as I had forgot to put syringes with adaptor in with the Kangaroo.
Getting ready to rush to School with the syringes, I remembered that I had an emergency pack behind the Kangaroo with bits and pieces. Unfortunately the things in there confused Geoffs Carer, so we still had to rush in.
When we were almost at the School we had a phone call saying that Geoff had sorted out the syringe and adaptor from the emergency pack, which I thought he would be able to do as he likes to take a hand in all his feeding and medical stuff. He is even trying to take over giving himself his Asthma inhaler.
Just have to get him to remind me not to forget his hearing aids again.

the trouble with having two blogs is sometimes you post in the wrong blog, which is what I did with this one.

Calogen and Paediasure

2008-07-03T23:07:00.004+01:00

Well I didn't know what title to put but as it is about these 2, it might as well be that.
I noticed that the Calogen bottles changed July 2007, I know this as that is when I took the photo of the bottle to email it to the Company. Unfortunately I must of sent it to the wrong e-mail address .
Why did I email them ? because I don't get on with the change of bottle and I thought they might like to know the reasons why.
The reason's why are that the opening is to wide for a syringe plug, so this makes it a messy affair, and if you have had anything to do with Calogen, you will know that it is messy.
Once the silver foil seal is removed, the bottles are not very secure in my opinion, as when we were away with it one time it must of gone upside down in the bag and it leaked out.
I know that they are small problems, but if you have to deal with it several times a day it looks a bit bigger.
At least I got a reply from them this time, and my comments have been passed on to the marketing department. I didn't expect anymore but wanted to put my view about them across.

The Paediasure was about if the bottles were recyclable, and I had a quick response from them, and was asked to ring a number.
Where I found out that the bottles were recyclable but to a lesser degree than normal bottles, due to the preservative needs for the formula, and I was happy with that answer.

Stoma infection

2008-07-02T22:36:00.003+01:00

The following night from the Asthma inhaler, Geoff complained about his Stoma, and yes it was red and slightly swollen, so another emergency appointment with the G.P and a course of anti-biotics and more time off School for Geoff.
We haven't had much problem with this Peg, unlike the one before his Button, which seemed to flair up every month.

We have now trained the Geoff's School carer in using the Kangaroo pump, (something the nurses didn't want to do) which now means he doesn't have to be taken out of lessons to be fed, which they did with the gravity feed.
We believe that is better for Geoff, as obviously it keeps him in the class more, something you don't think of when his paediatric nurses only wanted to teach the gravity feeding method.

We had Geoff's annual statement review the other week, well it was the first review we had had. No change there ,just hope that they have more Speech therapy in place after the summer Holidays !

Geoff went to his 2nd Birthday party at the weekend, which he enjoyed though obviously he didn't eat any of the food.

And thats it till something else Happens LOL.

A Trip to the G.P

2008-06-30T19:55:00.002+01:00

As Geoff's cough has carried on a bit past his course of Anti-biotics, we thought it was time to visit the G.P again.
So what do we end up with this time ? Only an inhaler for Asthma which he needs to take morning and evening.
Thats another Ailment we can add to his list and more medical supplies for his cuboard.
Geoff worked himself up tonight as he thought it was going to be a bit like the oxygen mask, it took a bit to calm him down by my o/h and he realised what a quick burst it was and didn't hurt.
Well I think we have a clear couple of weeks till his next E.N.T appointment in London, at least Geoff will get to see Bert the Goat again.

Another 5 minute appointment !

2008-06-27T12:20:00.005+01:00

Its Friday already and it was on Monday that we went to London for a Hospital appointment.
I didn't write sooner as I'm getting a bit lax at this blogging malarkey, though I have added a couple of posts on my other blog, which is turning into to my Computer Blog.

Back to Monday and it was a afternoon appointment at 1530hrs, which ran a little late so we saw the Consultant at 1630hrs, so much for me thinking we might get home for 1700hrs.
We hadn't seen this Consultant for a few years, as he had taken time out to do work in some other country, and so there was quite a bit of change in Geoff for him to see, and it made his day because when he last saw him, Geoff was classed as failure to thrive.
I didn't mention that it was a Gastro appointment, not that Geoff's peg was looked at, in fact its a pity we couldn't do a video appointment as Geoff looses a lot of School time with all these appointments and illnesses, in fact since Geoff started School in February he has only had a 48% attendance rate.
That was the appointment over and another one made, which will have us in London again on 22nd December ( though we have appointments with our other Consultants coming up).

We should of Headed straight back for the train, instead of stopping for a drink and then catching the Rush hour at Waterloo Station, though we did get a seat.

Geoff did get to feed the goats again, Cabbage this time as they don't like carrots.

Megan Teaching Geoff to swim

2008-06-10T21:07:00.003+01:00

Just thought I would add a video of Megan teaching Geoff to swim, as you can hear, he was concerned with getting the water in his mouth.
The Pool wasn't very warm either, though it has been nice to get in and cool off in the evenings.

Another Sleep Study and ECG

2008-06-06T23:07:00.003+01:00

Yes it has been quiet and have not added anything to my blog, but now we have just had a two night stay in London for Hospital stay, I have a bit more to write.

The day started out fine as we got to London and booked in to our Hotel, well almost fine as the pushchair did break its leg as we got off the bus. perhaps it was an OMEN, but for what ? ( other than don't buy cheap pushchairs from ARGOS).
As it was a sleep study, we only had to book Geoff into the Hospital and then we were free to take him away till the evening.
I took Geoff to feed the goats at Coram Fields, and I brought a cabbage this time, which went down very well and then Geoff had a play in the park area.
I recieved a phone call from my o/h, who was quite distraught as she had had her purse stolen in Hospital, while she was getting the travel money re-inbursed.
I didn't get the full story then.but Imogen asked me to keep Geoff in the park a bit longer while she tried to sort things.
I was getting near the exit to the park when I received a phone call from Ed, who had a phone call from some man who said he had the wallet at the front desk in the Hospital, I assumed he mean't the security at the front desk. so I headed that way.
Well it wasn't at the front desk. but Ed passed on the phone number of the man who had rung, which is when Imogen and the Security Staff appeared and received the wallet off a Muslim couple.
What had transpired was that when Imogen was sorting her bag and paper work out after receiving the travel money back was that she had walked away shortly, only to realise that she had left her purse, when she returned to the office,she was pointed in the direction of a woman in a black thingy that only reveals the eyes, making a fast exit.
Imogen gave chase but lost her, but it was revealed that the women was from a ward next to ours.
It was obvioulsy a random thing as when the Security closed in, they must of got scared and having gone through the purse, rang Ed who's number was in there, saying that they had found it.
Well all was fine apart from a bit of money missing, not worth calling the Police in for though.

So back to Geoff who stayed the night in Hospital, and while we were getting ready the next morning, he rang us on his mobile phone at 0615.
Yes it is strange for a 6 year old to have a moblile phone, but anything to improve his speech problems is a good thing !

We should of settled for the goats and the park again, but had mentioned the Bumper cars at the Trocodero centre to Geoff, which is where we went the afternoon after his sleep study.
Unfortunately when we found the Bumper cars, he was to small still to go on them, and so we had to make do with the Arcade machines.

Our Friday appointment, which we thought was Cleft and Palate, was only a speech therapy which though very important to Geoff. we could of if known arranged it so we didn't have to stay the extra night in london.
I have to say that while we were in for the speech study. I realised that I had left Geoff's hearing aids hanging form the mirror in the Hotel we had booked out that morning, and which Imogen had said the night before that I wouldn't remember them there.So I had to rush over and recover them.
We then travelled home and had to go out to complete the shopping for our Daughters 13th Birthday which was today the 6th.

Geoffs Birthday & Back to Cardiac

2008-05-15T09:40:00.003+01:00

Well Geoff enjoyed his 6th Birthday Yesterday, and he got the house up a little earlier than normal.
Yes we were up at 0515hrs with Geoff getting into his presents soon after, which was a new Bike , little camera and a paddling pool.
He was on the bike straight away, the pool took about 3 hours to fill as its one of those Fast Set Pools with the inflatable tube at the top.
After School I had to get in the pool with him, even though it wasn't very warm, in fact it was freezing.
While we were in the garden we witnessed a strange humming noise, and when we looked up it was a swarm of wasps. Luckily they didn't stay long, and moved on, but it was a weird experiance.

Today we recieved a phone call from Geoff's Respiratory Consultant, who is not happy with Geoff's Blue periods and has referred us back to cardiac, when we are up for a sleep study.

Chemist Locums are they any Good ( no )

2008-05-12T13:23:00.002+01:00

We went to pick up our supplies again today and wondered what the Chemist Lottery would bring us.
Surprise Surprise not everything that we required again.
They seem to have problems getting our Paediasure 500ml ready to hang bottles, or should I say they get bottles, but they are Paediasure Plus which is not his prescription for that amount.
They also don't seem to be able to supply the right quantity of Trimethoprim, giving us 30mls instead of 100mls.
Maybe once getting it wrong would be passaable, but to consistently getting it wrong is beyond a joke. The last order we picked up the day we went on holiday and it was just lucky that we had enough to cover the 4 days away.
As we seem to be tied to this chemist by the GP's we shall have to talk to them.
Just like to say that we never had a problem before the Locums.

The Blue Lip

2008-05-12T08:36:00.004+01:00

We took Geoff swimming again on Sunday which he enjoys with his water-wings on.
He had a good swim (ish) and play with his brother and me in the pool, and towards the end I noticed he had a nice blue tinge to his upper lip again which he gets after exercise or for any reason he wants.
This is not new, though we had hoped he wouldn't get it after his heart surgery, which was 4 years ago, on his Birthday.
About a week ago when he was playing football in the garden, he had a blue tinge around his mouth and so we put him on his oxygen machine for a little while.
He doesn't always have any other symptoms with the blueness, though when he does it is usually a vacant look, which he had one time on the tube in London for no apparent reason.
This is an ongoing situation, which I think that they are hoping that he will grow out of, as they have no answers for it yet ( awaiting results of Mutant blood test )

Nice Hot Day in London

2008-05-07T16:33:00.000+01:00

As we had an early appointment in London, we had to get the 0812 train which as usual was packed so we found a nice place on the floor ( Imogen didn't sit on the floor ).
The Bus was just as packed, but we were offered a seat by a passenger on the Train and Bus, which we declined as we like to rough it.
Geoff had his bloods taken first which went very well, now just have to wait 2 months to find out if he is a Phox2B mutant.
We also saw ENT and its a wait for the sleep study to confirm but probably he will have to have the rest of his adanoids taken out.
They also suctioned his ears so he could have a new mould done for his hearing aid.
So that was us finished by 1115am and then we went to see Bert the goat, and we discovered that goats aren't partial to carrots.
Then it was a quick Bedford burger and bus and train home.
Next Hospital appointment is the 23rd which is Gastro and a afternoon one this time, then a sleep study in the beginning of June.

Purple Syringes Rule ( when you can get them)

2008-04-28T11:44:00.005+01:00

It seems that the change over to Kangaroo bags and the purple syringe connection was accomplished before the supply lines for Purple syringes was put in place.
We can but laugh, well unless you need them then its not much to laugh about at all.
With our last supply of syringes we were given 2 types of adaptor, one type that was no use for anything and another the 'Freka Universal Funnel Adaptor' which we use anyway for flushing Geoff's peg, so I didn't immediately associate them with the new Kangaroo connection.
It seems that they connect to the purple port and so can be used until supply lines for purple syringes is in place.
As long as this is short term as it defeats the whole purpose of the change for safety reasons, not that it will affect us as we have no iv lines.

My o/h felt quite sorry for the nurse on the phone this morning, as they can't be blamed for the purple syringe fiasco.

Community nurse ! what can I say LOL

2008-04-25T09:15:00.003+01:00

I'm sorry if I offend anyone, but we have never in nearly 6 years had a good service from our Community nurses.
We consider them our suppliers but even at that they fall down !
We received our new purple equipped Kangaroo bags at the beginning of this month, but have yet to receive any purple syringes to go with them.
When we received the letter from Kangaroo bag suppliers about the change, we duly informed the Community nurses, and again when we received the new bags.
We were told by the nurses that the syringes were ready to be picked up from our GP surgery, which we did only to find they were still the old style syringes. On the phone this morning when we eventually got through to them, they informed us that they didn't have any in and didn't know what to advise us to do!
Luckily for us we still have some of the old style Kangaroo bags or we would have to go begging around the Hospital.

On a cheerier note Geoff is now using his School transport and is enjoying it in School again.

Kids back to School (again)

2008-04-21T09:32:00.002+01:00

Well that's the Kids back to School, though we had to take Geoff as he was a bit upset as had been off for a month.
Hopefully he will be using School transport tomorrow.
No appointments till May 7th for ENT and 23rd for Gastro, though we may have to go up before as one of his hearing aid broke.

Back from Butlins

2008-04-15T11:35:00.000+01:00

Well we are back and I enjoyed it as a kid but not as a parent, well that was apart from the evening in the Centre Stage where I got to sing Piano man and YMCA from my seat, much to the embarrasment of my daughter.
We arrived too early on Friday as couldn't get into the apartment/chalet until 1600hrs, and as the car was jampacked we couldn't get the swimming stuff out, so all the kids wanted to do was go on the slot machines which there were plenty of everywhere !
The main thing is that the kids enjoyed it even though there wasn't much that Geoff could go on due too height, and the things he could go on he wouldn't with out one of us with him, and we were all to tall to go on them.
Geoff;s behaviour disintegrated into appalling on the last night and continually wanted things bought for him, and though he says he enjoyed Butlins, we will try a find a holiday away from any slot machines next time.

Off for a Mini Break

2008-04-10T22:02:00.002+01:00

We had to move the holiday forward as we had no one to feed the cat, and so we cancelled the hospital appointment on Wednesday, as we had to prep for the 3 night holiday in Butlins.
We have had to cancel going on holiday on several occasions due to Geoff's illness, and so we are going for it this time.
Everything is packed including all of Geoff's feeds, even though the Chemist has let us down by not having our order in again !
We didn't even think about Geoff's Oxygen, and so have had to put the emergency bottle in the boot of the car, as it was to late for the Oxygen suppliers to arrange a supply at Butlins.
Geoff has been very excited since he learnt that we are going on Holiday, as usually the only times that he gets to go away is when he has to go to Hospital.
And so we will be off tomorrow morning to Butlins.
We have now been supplied with the new kangaroo bags which have the new medical port connection which needs the purple syringes. The changes have been made as someone made a boo boo and used an enteral feed in a iv line.

Geoff is a Suspected Mutant

2008-04-06T10:34:00.002+01:00

Well we had our appointment on Friday with the Respiratory Consultant, and he has decided that he would like Geoff to have a blood test for a condition known as phox2B mutant.
Which as most other things have been ruled out with the Cat and Mri scan, they think is a distinct possibility. The Consultant wanted to take the blood on Friday, but as we had told Geoff that it was just a talking appointment and the fact that it is generally not easy to get blood from Geoff, he won't be having the blood taken till this week as we have another appointment.
Thats supposing that the travel system doesn't crumble with this little bit of snow that we have had today lol.

Early this morning before anyone had been on the snow.

View in other direction.

This years snowman with the red bits from the Kangaroo feed bags, as eyes and a carrot for a nose.

And Geoff insisted on a mouth.

Milk on the Bed

2008-04-01T22:52:00.002+01:00

I went in tonight to flush Geoff's feed line and wouldn't you know it, the medicine port cap was loose, with the result of milk over the bed. Not the first time it has happened, obviously a lack of concentration on my part in not making sure the port was secure when I got it out of the bag.
Well Geoff's top had to be changed, and he wasn't keen on being woken up and the bed sheet I just covered with a towel, eek I will be sleeping on it later.
My apologies for the mix up it is respiratory appointment this week on Friday and gastro next week.
Geoff took a hand in his feeding today by doing the flush himself, and that included clamping the line then un-clamping it. He said to me tonight that he wanted to disconnect it in the morning, but I told him it would be to early and he would still be asleep, as it finishes around 0400hrs or a bit later as you can't rely on those Kangaroo pumps over a 10 hour period to be very precise.

Panic over Breathing more normal now

2008-03-31T06:30:00.002+01:00

I'd like to say we were just panicky parents, but I don't think we are, or we would of taken Geoff to Hospital a few more times that we have.
Sorry I didn't post earlier when his breathing had improved which was around Thursday I think, we will still have to check with our London Hospital if they still want us for the ENT appointment, as we have another appointment up there this week on a different day for a Gastro checkup and we don't really want to go up there to often if we don't need to.
Well we are now on BST, and with it being that much lighter Geoff was playing up in bed. We really should think about some blackout blinds, as it would make it so much easier at bed time.
I didn't mention that during the bad breathing, Geoff was again in our bed and one night I couldn't be bothered to move him, so I curled up in his bed only to be woken by him a bit later and I moved in to our bed and he moved into his. I didn't get the WHY from him till the morning.

Sleep apnea worse than before Op

2008-03-26T07:24:00.001Z

After putting up with it for the weekend, on Monday night we sought advice and the Doctors and nurses who heard the noise Geoff makes while asleep, over the phone recommended that we take him into Hospital.
We weren't keen on doing this because we knew that if we woke Geoff up to take him to A + E, as he was awake he would seem as if nothing was wrong with him.
The call out Doctor wouldn't come out, but phoned the ward so that we bypassed A + E, not that the result was any better.
Geoff was given a bed, but never reached a deep sleep, which is where his really bad breathing occurs, and all the ENT Doctor could recommend was a prescription for a nasal decongestant, which the Hospital pharmacy lost so that we didn't get it till1500hrs. We got out of the Hospital at 1000hrs as there was no point staying there.
So Geoff has had another bad night, where he seems to move around our bed in his sleep trying to get a good position so that he can breathe, quite often sitting up with his head slowly dropping forward before catching himself from falling flat on the bed.
So now it is wait and see what our London Hospital have to say, but we think that it looks like all of the adenoids are going to have to go !

2008-03-22T20:50:00.001Z

Well Geoff has had his Tonsils and partial adenoids removed, and the Consultant was 100% sure after the Operation that we would not get much benefit from it, and so are we now as listening to him struggle for breath while sleeping tonight was painful. Yes I know that there will still be some swelling and we would like to be proved wrong, as when we have to go for the full removal of Adenoids it will result in further cleft surgery and more problems with his speech.

Our Hospital stay

We arrived in London the day before Surgery, as we had to be on the ward at 0730hrs for morning surgery, and even if it was possible to get there on public transport, we wouldn't like to travel at that time in the morning with Geoff.
Geoffs feed had to stop at 0300hrs and then he could only have water till 0600hrs, so I set my alarm to change the bag over on his Kangaroo feeding pump to water, then had a few more hours sleep.
Once on the ward we kept Geoff entertained until he was taken down at 1100hrs, his operation gown didn't go on till that moment as it only upsets him more.
As always he wasn't happy going under the gas, and I held him until he was nearly asleep and put him on the trolley.
We then had about an hours wait till he was in recovery and we could go and see him, and didn't the nurses need our help, as Geoff was not keen on the nasal prong which was inserted in surgery to aid his breathing and they were trying to re secure it as he was trying to pull it out. When they tried to suction around it, his arms and legs went in to full defensive mode and I don't know about the nurses but i received a couple of hits from Geoff.
Imogen made Geoff realise that he would have to keep the prong in so he stopped trying to pull it out.
The nasal prong had to be kept in for one night and then Geoff had to have a further night in hospital to make sure he could breath alright without the prong.
I am forgetting a lot that happened, so shall try and add anything I missed later.

Though one funny thing happened to Imogen when she was in the lift going to our accommodation, when the automated voice said that the doors were opening, they didn't seem to be so she panicked a bit and got on the emergency phone, and they told her to turn around. As there were two doors on the lift, and when she turned around those doors were open.

Electricity Cut off Today

2008-03-15T20:25:00.002Z

Today was a bit unusual as the Electricity went off at 1400hrs, Geoff came and told me that something was wrong with the TV, and we soon realised that the power had gone off.
The Electricity workman had been digging a hole on the opposite side of the road from us, but we thought that we would be told if the power was going off, though we were more concerned that power would be back on in the evening, as I don't know how long Geoff's Kangaroo feed pump battery would last for and we also wouldn't be able to use the Oxygen thingy.
Imogen the wimp was all ready to book us into the Local motel if power wasn't on at 2000hrs, although not really without reason, as if Geoffs feed stopped working it would be that or the local Hospital.
Geoff enjoyed watching the workmen across the road and as you see, got his photo taken by workmen in the digger ( kangaroo feed pump and all ).
Geoff wasn't too upset that the TV wasn't working, though he had Ed make one out of a Cardboard box, which we did News reports from, and Megan decided to have a long Siesta (3 hours) as the Computer and Internet were obviously not working.

The power was too be out for about 5 hours, so we had our evening meal a bit earlier so we could eat in the light, luckily we have a gas hob.
So we had a candlelight dinner, with the TV starting up just as we were finishing our meal, Geoff was happy and Megan rushed upstairs to get online, I was missing the peaceful silence of no TV's already.

Perhaps I should of elaborated on the Kangaroo power situation, as in it was not plugged in the night before as all sockets were in use at time and I forgot to put it in later, not a mistake I will make again.
It is not until you don't have Power that you realise how reliant we are on it...

Reason Geoff needs his Tonsils and Adenoids out

2008-03-14T15:19:00.003Z

When I went to bed last night, which Geoff has been in for the last couple of nights due to not feeling to well with his tonsilitis, I decided to record his breathing on my Do everything Phone.
As you can hear, this is the reason that he needs his Tonsils and adenoids out.

On a lighter note here is some Bread that Geoff and I made this Afternoon.

Okay maybe not that light

Odd looking GingerBread men

2008-03-12T15:52:00.003Z

To keep Geoff amused, we decided to make Ginger Bread men.
The one on the left is Bart Simpson.
The two Ginger Bread men are a bit broken now as they had a fight, and Bart is in pieces.

Due to a more serious operation on someone else, Geoffs Operation has moved one day later to Thursday.

New Date for Op

2008-03-11T14:07:00.002Z

That was quick, we have a new date for Tonsil and adanoid operation already, and it is next week on Wednesday.
So it looks like it was a waste of time unpacking !

Hopital Trip Cancelled due to illness

2008-03-10T15:03:00.002Z

Unfortunately Geoff wasn't well enough today for an operation, so we have had to cancel it and hope for another appointment soon.
Geoff came home from School on Friday with an itchy eye, which turned in to a conjuctivitous, you don't want to meet one of them eye to eye .
We took him to out of hours Surgery yesterday and were told that it looked like he also had a touch on Tonsilitus, so that was making our trip to Hospital doubtful, especially to have his Tonsils out !
Also last night at the dinner table Geoff was sick on the table, which put Megan off her meal (but not her pudding later) and after clearing it up, Imogen and I carried on eating as we have been quite used to Geoff being sick.
Well this morning he didn't seem any better, so we phoned the hospital and they said that the operation couldn't go ahead.

I've gone greener

2008-03-07T22:01:00.004Z

I am officially a contributing member of Freecycle, with my first offer that was picked up this evening. I'm sure I will find a use for it now that it is gone, but it was hanging around for quite a few years and it has gone to a good home. What am I talking about it was only a 13kg gas bottle, full I might add, and have found out today online that its value has doubled since I brought it.
So no wonder I had quite a few people asking for it, and I went for the first one who has a train set in his back garden or knows someone with a big train set in there back garden
I hope they are okay with me borrowing the photo from the website The Spinney Light Railway, after all I did contribute a bottle of gas. for what I don't know as I didn't ask.
I'm sure that I have some more stuff that I can put on freecycle, maybe not as good value as the gas bottle though ( £50 odd, I didn't know, it cost me £13 for a refill. )
Mr train driver, we might be contacting you again for a ride on the train.
And a deep heart sorry to the Scout group and Mr barbeque and a few others, as I only had one gas bottle.

Feeding Success with Cat

2008-03-06T20:18:00.005Z

Well Geoff isn't the only one with feeding issues in the house, and it looks like we have found something that Pushkin likes and this is it Tesco Supreme, which actually costs less than the stuff we had been getting that she wouldn't eat all of.
Tis the first time that Pushkins has licked her plate clean.
Just have to make sure she doesn't eat too much now.

So that is a thumbs and paws down to Whiskers and Felix cat food.

Tonsils away

2008-03-06T09:21:00.002Z

I must say that was quick !
We received a phone call this morning from the Hospital and have a date for Geoff's Tonsils and adenoid removal, which is next Tuesday .
So that will probably be a 2 night stay in Hospital for Geoff which he won't like at all.

NEURO NO ANSWERS = SUCK IT AND SEE

2008-03-05T21:52:00.003Z

Though they were too PC to say it, that is what they meant.

Yes we have been to Hospital again to get results from Geoff's EEG and MRI scan, and it is nice to know that there is nothing in his brain that they can see that causes his fits.
But unfortunately they know and have on record that Geoff has central and obstructive sleep apnea, the Obstructive will hopefully be sorted when Geoff has his Tonsils and adenoids removed. We are on the list for this operation so that is a wait and see, even though it could cause problems with Geoff's Cleft and speech.
As for the Central apnea they don't know what causes them and have stopped looking, with the Hospital we use if they can't cure it they ignore it.

Dad or should I say Grand fer came for one of our appointment as we had two, the first being ENT where Geoff was put on the list for the Tonsils and adenoids Operation.
We finished up with a burger and beer at the Bedford, yep we still use it though we tell them how we want our burgers now.

EEG and MRI scan

2008-02-27T20:04:00.005Z

& Lift Scare

We got into the Hospital nice and early and after going to the ward, we were sent to the neuro suite for the EEG scan.
The Consultant came to talk to us about it saying that it may induce one of Geoff's seizures, and Geoff didn't like the sound of the consultant and ended up sniffling on my shoulder.
As you can see by photo's, some nice sticky goo was used to stick the sensors to Geoff's head, and then they had a DVD player for Geoff and Me to watch as they were doing the scan.
Part way through Geoff was given a windmill to blow for 3 minutes and so to exhaust him, and after that it was different series of flashing lights.
When we got back to the ward we received an appointment for next week to go through the results and we just happened to be up that day anyway for a ENT appointment.
Then we had a wait for the MRI scan, which for a change the anaesthetist told us we were 1st on the list, and expected to go down at about 1330hrs, He also told us that he would have no problem putting a cannula in one of Geoff's veins when he was under ( it took him 2 attempts to get the cannula in ).
So at about 1300hrs Geoff was given a pre-med and after 1400hrs the Porter eventually turned up to take him down.
Unfortunately they picked the time Geoff was on the table waiting to be gassed, to go through a long questionnaire about whether Geoff had any metal in him and other medical problems, with Geoff getting more upset, before they eventually got around to gassing him and him going to sleep crying. A silly delay with a form that could surely have been done on the ward without causing upset.
About an hour later Geoff was in the recovery room very sleepy still and came awake crying , as they say they do if they go under crying.
We then had a45 minute wait for a porter to take Geoff back to the ward. Geoff had been delayed going down because no porter had turned up and the Anaesthetist had came up twice to see what was going on.
We got out of the Hospital about 1700hrs, spent a night in the Hotel. and the next morning on our way down in the lift from the room. the lift stopped and the lights went out. Geoff was a a bit upset, but I managed to calm him and Imogen was showing a brave face for Geoff as she is not keen on confined spaces.
We pressed the alarm button, first of all the alarm phone wouldn't connect and when it did we were asked what lift we were in, as there are only two lifts in the Hotel, I said the small one. Silly me as they wanted to know what building as they cover more than one building.
Well It was probably just a reset button as we were soon out of the lift and we then walked down the stairs.

Another bad Ed day & off to Hospital again for us

2008-02-25T08:34:00.003Z

Unfortunately Ed failed his second driving test, through a different fault this time, but unlike the 1st time he didn't realise that he had failed until the instructor told him at the end. For a short time after he wanted to change to an Automatic, but that idea is out of his head now.

We are off to London today for Geoff's MRI scan which he will need a full anaesthetic. So it will be a 2 night stay for us as it is an early start on Tuesday in the Hospital and they like him ( anyone) to stay up after a full anaesthetic, though he won't be staying the night in Hospital, we will be in the Patients Hotel opposite.
Weather permitting we will go and see Bert the goat.

Megan who is staying with her Grandmother, will no longer be allowed to pack for herself as she failed miserably yesterday, one wonders what she did take because it didn't include things like knickers, socks, PJ's and toothbrush.

Have just been informed that she took the essentials, which to her was:

1) Hair straightener

2) Make-up

Driving Test Booking Fiasco

2008-02-19T08:48:00.002Z

Due to reasons unknown, we found out yesterday that the Test we thought that was booked for Ed for Thursday, was in fact not booked.
Luckily we managed to get a last minute booking for Wednesday, if not we would of had one stroppy upset 17 year old, and you don't want to be near one of those I can tell you.

One of the things that the RAC man fitted into Penelope was a navigation aid, which consists of a button that you press and it connects you to the travel centre where you give your destination and then you get a programmed route which comes out verbally to the car. Geoff who couldn't resist pressing it a few times got the man answering at the other end as I didn't know at the time how to cancel it. As the car can be tracked by the Black box, I was wondering that if you are out driving after Midnight do they ring you on the car and tell you to go home or does Penelope then turn into a pumpkin ?

I've got Nothing to Wear

2008-02-18T11:03:00.000Z

It's all fun at the moment with Megan and no clothes to go into Town after we wouldn't let her wear her Tiny shorts.
Everything else she had was either too small or too big, or so she said. Though why she buys clothes that don't fit her I don't know !
She won in the end by giving us all a headache and was given a £10 voucher from Ed, that he had found and more money from us (stupid or what especially as she already has a generous allowance ) to purchase something in town, though she was given guidelines as to what she could wear. Whether she keeps to the guidelines I don't know.
Meanwhile the RAC man has turned up to fit a Black Box into Penelope which tracks her movements, which is part of the Pay-as-You-Drive Insurance, that we are trying out to see if it will work, as although it is not as expensive as normal Insurance, the car isn't allowed out between midnight and 0600hrs in the morning and it is also based on Mileage.
Here's looking forward to a nice Half Term Break with the Kids home..........................

Detention Please

2008-02-12T15:55:00.000Z

I was going to post about this women having trouble filling her car in a petrol station, but I feel guilty that I didn't go and help, my only excuse is that I was in the car zone and waiting to get to a pump myself.
Instead I will go on about Megan who has just received her second after School detention , and no I don't remember how many I had when I was at School but don't think it was many.
It was quite funny at dinner time yesterday as there was the usual kicking under the table and denial of doing it, only I caught her out by having my foot as an unseen shield which threw her denial right out of the water
, so she then moved to the your foot hurt me by being there. The answer that she wouldn't of hurt herself if she hadn't tried to kick doesn't really fit into her logic.
Well she is at detention even as I wrote this, and with her grounded on Friday, Megan won't be too happy. Though I must say that we don't normally ground the kids as that only caused more pain to us, but I will get over that by still allowing her Internet access. Well she is missing a night out ice-skating with friends !
And as for Ed who was supposed to have a driving lesson yesterday which we payed for, but cancelled it 1 hour before by text, instead of the necessary 48 hours.
When I was a kid, yadda yadda yadda

Bargains and more at Blackbushe

2008-02-10T17:08:00.000Z

Well have to keep Penelope running until Ed passes test, so today we went to Blackbushe Market mainly to get Megan a coat, and hopefully she will wear it, if she picks it as the good coat we bought her she wouldn't wear.
She eventually found one, but when she got to us it took an age to find the stall again. No pictures of coat but here is Megan with the hat she bought herself, her friend Frankie also bought one but we didn't see her wear it.

Geoff enjoyed the slide and also some new PJ's, which are quite Yellow but he likes them.

I visited one of the many mobile phone stalls and purchased a cover for my phone, all very exciting I must say, .
I decided to put the picture of pushkins in, Megan hasn't seen it as it is her brush that is being used.

Catch-up appointment & Driving disappointment

2008-02-07T11:51:00.000Z

Well we went to the London Hospital for our two appointments on Tuesday, the Neurology was really a catch up, as we had been transferred from the registrar to the Consultant's care.
So it was just to see how Geoff was and what they will and won't get from the MRI scan,
The Audiology was to get the moulds redone for Geoffs hearing aids, but first they had to suction out some wax from both ears.
Things have changed slightly since our last visit to London ( not that long ago), the Bonnington Hotel in Southampton Row where we have stayed a few times, has been taken over by some other hotel chain and is now called the Park Inn. The Burgers in the Bedford Hotel are not up to scratch and so it looks like we will have to find another watering hole for a lunch time meal, well after 5 years its probably time to move on. We ended the day by joining the rush hour train traffic to get home.

Penelope is now fit for the road and legal, but unfortunately Ed failed his driving test so will be taking it again during half term, and hopefully not meet up with any white vans, as he failed by not seeing one at a roundabout.

No Spirits in School Please

2008-02-04T16:26:00.000Z

After a weekend of our daughter and her friends scaring themselves by dabbling in the mystical and black arts of the Ouija board, it has also been carried on at School and to the notice of the School teachers and head who are trying to clamp down on it by supposedly saying that it is illegal and all 100 participants will be either included or excluded.
The action of using the Ouija board in School will bring spirits into the School, with the result that the pupils eye's could roll inside out and pour with blood.
the result of being possessed more than 3 times will obviously result in death.
The police will be informed and those involved will be fined (not the undead I expect, as they don't as a rule pay fines).

We suspected as much

2008-02-03T16:55:00.000Z

On Friday while talking to Geoff's helper at School, Imogen asked her what training she had been given by the nurses, and she revealed that she hadn't.
Not quite what we were led to believe, that she had been trained in resuscitation in case Geoff had a fit.
Obviously some urgent phone calls to the paediatric nurses tomorrow morning............

4th Feb : The buck has been passed to the School, who will have training in place soon.

Penelope Failed at The Pitstop

2008-02-03T16:27:00.001Z

This is a model ! not real Penelope, who was to
too upset to face the cameras.

Earlier today, in fact at 1300 hrs we were given the bad news that Penelope would need surgery.
As she is a car we will have to go private, well it is either that or DNR ( do not resuscitate her), oh by the way I didn't name her and she isn't my car, she is Edmund's who will be taking his test on Wednesday.
Poor Penelope has been waiting a while for the grand day, only to be let down by a common old Fiat ailment. Something to do with her back wheel bushes, probably something a bit more technical than that.
Well it was either surgery or spares, and better the devil you know, not that she is a devil, just a little Punto.
Penelope's surgery will cost more than her true monetary value.

Daddy Owns Up

2008-02-02T14:26:00.000Z

Yes it looks like it was ME, while retrieving my trainers where I keep them I uncovered the hiding place of Megans Ipod.
I hadn't worn my trainers for quite a while, probably about the same amount of time that her Ipod had been missing and I think everyone had been blamed for the missing Ipod, especially Megan who I apologise to.
Of course it wasn't my fault, it couldn't of been could it ?
The blame clearly lies on my failing memory and if Megan had done as she was told ( due to the failng memory can't remember why I cofiscated it ) I wouldn't of confiscated it.
I must stop hiding things and forgetting where
I must stop hiding things and forgetting where
I must stop hiding things and forgetting where
I must stop hiding things and forgetting where

Geoff's friends

2008-02-01T20:28:00.000Z

Looks like Geoff had a good week at School,
and seems to have made some friends.

School progressing slowly

2008-01-31T11:07:00.000Z

Well due to Geoff not being able to go to School all day without feeding in place, funding was found to provide halfday transport so that he could go in at 1300hrs for afternoon School.
It has mean't we have had to juggle around his feed times, but Geoff has been very happy to be in School.
Geoff is coping well with going to School in a taxi with an escort, who just so happens to be the taxi drivers wife, and also coming home when he is transported with two other kids.
We took Geoff in on Tuesday and Thursaday as the nurse was there to train one of the helpers in feeding, which is going to take longer than we wanted as each helper has to be supervised by the nurse 2 times doing the feed, and they have to train three helpers.
We took the Kangaroo feeding pump with us on Tuesday, though we wouldn't be using it, it was more by habit. When the nurse saw it We are sure it scared her, so we hid it and didn't take it in on Thursday.
We also will be taking Geoff in on Friday for another training session, which will mean one of the helpers will be able to do Geoffs feeds unsupervised ( apart from by Geoff's eye's ), so then Geoff will be able to start fulltime School.
That is apart from Tuesday and Friday next week when Geoff will be having a visit to Hospital for Neurology Audiology and Respiratory.

HOW TO UPSET YOUR DAUGHTER 001

2008-01-25T09:40:00.000Z

I put 001 in title as there are many more ways thay I can upset her
Megan received a nice shiny Computer from Father Christmas, which she was happy about. To her indignation I haven't let her have administrator rights, well I'm not that crazy , though if I am to believe her some of her friends parents are.
The next upset was when I removed 'Limewire' from it as she says its not illegal, which it isn't, the illegal bit is when you download music.
She thought she had got around this by installing Bearshare, which she again insisted was legal, I again removed it with much pleasure.
Megans logic is that it is her computer and she should be able to do what she wants with it

I'm must say that I am quite happy with Vista on her computer, which is what she wanted I suppose because it is new and shiny.
If she had known how much more parental control is built into Vista, which XP doesn't, perhaps she wouldn't of been so keen on it.
Without any additional software I can easily restrict the type of sites that she can visit, and also block any that I want to.
Downloads I haven't stopped, but she needs my password to run them, which I make sure that she doesn't see...

Update

2008-01-22T17:42:00.000Z

Well things are slowly falling into place, that is apart from the paediatric nurses who are never available when you need them.
More Hospital appointments with an MRI-scan and EEG-scan taking place on 25th February, and it will be another Full anesthetic, (the 1st of this year) so that will be a two night stay due to an early start on the first day and then an overnight as they don't let you take your child home after a full anesthetic.
The EEG scan >click this link< is to hopefully find out the cause of his fits.
The MRI scan >click this link< same sort of thing.

I Don't think we be able to get Geoff's School uniform off till bedtime tonight.

Unfortunately School not equipped for us

2008-01-22T11:16:00.000Z

We have been kicked in the teeth again over our son Geoff, It has been a continual battle to get him sorted with us doing all the chasing to get all his medical needs looked after.
Finally at a stage where he is in a position to attend School, it has been put on a semi-hold not for one problem but two .
A week in to a new term when he was due to start, the pediatric nurses who were supposed to teach the helpers at school, messed up again, through a lack of communication and grasp of Geoffs medical knowledge. Basically she came to the School to teach them how to feed using the gravity set, which she didn't have with her and we didn't either as we had never requested gravity sets from the nurses, as we use the pump for all his feeds.
So nearly a week later here we are prepared to go in to to School so the nurse can train with the right equipment, and they have had to cancel, with no idea when they will be able to do the training. If it was just that we would be able to get him in for half days and work around his feeds, but unfortunately the transport side has not gone well either. He will be getting transport but first they lost the forms, and when they had that sorted no escorts are available to take him to School.
Well am feeling a little bettter from writing this down, hope fully we will be able to get him in for a couple of half days a week.

Fully Equipped For School

2008-01-20T10:33:00.001Z

Oh and yes he will have shoes on tomorrow,.

School 10 - Paediatric nurses 0

2008-01-16T20:43:00.001Z

Well Geoff has had his 1st taste of School today, and I have to say that so far he is happy.
Just a pity that the paediatric nurses hadn't communicated a bit more, as when one of their number came to the School today so as to qualify one of the helpers as able to feed Geoff, She wasn't aware that we did all Geoff's feeds with the enteral feeding pump.

Why she wasn't aware I don't know, as they have been our Paediatric nurses for 5 years, and we had never requested *** Gravity feeding sets from them, and it was gravity feeding that she wanted the helpers to learn.
Unfortunately we were set up for the pump feed and she had not brought any gravity feed sets with her. Also I got the impression that she wasn't familiar with *pump feeding, so couldn't of taught it anyway, and before you ask No we were not allowed to train the helpers.
So Geoff will be going in again on Monday, though we will have to be around to feed him as the nurse can't be in to train again till Tuesday.

As to Geoffs future Hospital appointments :
His ENT has been changed 3 times.
His Neuro has been changed 2 times.
Respiratory has been changed only once.
Still awaiting a date for the removal of his Tonsils and adanoids.

On a lighter note Megan wants to wear a skirt that is more a belt to the next SNAP "DISCO"

*note: This should not of surprised us, as when Geoff was in the local Hospital, they missed his morning feed as they didn't know how to do it. All the other feeds we used to setup.
**We are a bit dubious as to what Resuscitation training the helper has been given from her comments today, but were to stressed out to question it today.
*** A gravity feeding set is just a large syringe or bag with short length of tube and a pressure brake to set the speed of feed.

Nearly Ready For School

2008-01-06T15:17:00.000Z

1st Snow of the Year

2008-01-04T14:24:00.000Z

I know that you can't see the snow but it is there. Geoff was hoping for a bit more though.
Well that is Christmas and New Year over again, though it was enjoyed by all I'm glad it is over. Unfortunately Hardly any pics as camera is broken and haven't replaced it yet and phone camera's aren't much good.
I also have another dodgy Keyboard due to kids and water which has left the space bar not working, so is taking an age to type.
Geoffs school entry has been delayed another week due to him having a peg instead of the button. His nurse was trained in the use of the button so will have to be trained in the use of the peg for feeding and they can't do it till next week.

That is the neighbours now moved onto pastures new and hopefully they will have a quieter time.Not that we were bad of course, more that they were unreasonable .

All ready for Santa

2007-12-24T19:55:00.000Z

The Big stocking on the left is mine

Is Christmas Not Here Yet ?

2007-12-23T11:28:00.000Z

Only two sleeps to go and I wish in one way that it was all over already, perhaps we shouldn't of had everything ready to early. We have our one solitary tree up, which is as far as we go for decorations (Humbug I say). Not that we were that early getting the presents , as I said earlier (didn't want the kids finding them while we were up in Hospital. Not that i myself ever went in for looking for Christmas presents when I was a kid ( did I Alexandra ).

Our parents were so scary That one Christmas when we were kids, I remember that we made a recording asking to open the presents and then put the tape machine in our parents room on play, and there my memory fades but I am sure we then opened the presents.
Geoff is the only one who doesn't know what he is getting for christmas as the others have had there orders in for ages.
We have plenty of nuts but unfortunately no nut crackers, but I have heard from a source that i will be getting some for Christmas. Whether I let anyone else use them is in question.

I Think they had a nice time

2007-12-17T16:55:00.001Z

The Children received Goody bags on the way out of the party, which for the girls included a Tamagotchi. Not forgetting the Bears that they all got in the party, which was a bit embarrasing to my o/h as she was downstairs on a busy London bus to the station with the pram and a bear sitting in it while we were upstairs with Geoff singing 'The wheels on the bus' song an Megan and Lizzie being equally loud.

Santa at coram fields

2007-12-17T15:10:00.001Z

Was a bit cold outside, but warmer inside and even the Stars were out, including Sponge Bob and Dora the Explorer, who Geoff quite likes, Not to mention the reindeers, rabbits, rats and all
Santa Claus Also was around being protected by the Elf defense team ( more FBI agent than elf ).
There was chocolates aplenty, though Lizzie one of Megans friends who was with us must of payed a few visits to her tray, as the Chocolate lady recognised her

Oh and Paul McCartney showed his face.
The Kids enjoyed the Party and Geoff bucked up a bit as he was feeling a bit unwell as we got to London, Must of been the closeness to the Hospital .

Christmas nearly in the bag

2007-12-12T10:31:00.000Z

Geoff is feeding off his 'long tube Peg' as the Americans call it, he is also as of 2 nights ago back to sleeping in his own bed. I must admit it was getting a bit uncomfortable sleeping on his arm.
On Monday we took the bull by the horns and went Christmas shopping, spending 5 hours in Town, completing nearly all of our shopping for presents. Geoff was a bit upset as he wanted to sit in his pushchair but it was full of bags of presents as you can see !
As we were in Town past the end of School, I had phoned and text-ed my daughter to tell her not to go home as she has to change buses in Town anyway. But as always when we need to, her phone was switched off and so she had to wait until we could get home, also ed was stuck outside in the cold too ( he lost his key yonks ago) and he knew we were in town as we had got through to him. Me and my o/h found it quite amusing.
So just the wrapping to do and thankfully we are clear of any proposed Hospital visits until after Christmas.

Home now Peg an all

2007-12-08T20:30:00.000Z

Well that excursion didn't go to plan, but it hardly ever does. As I said he now has a peg instead of the Mic-key Button that we had thought that we were going to get. We have had two pegs before the 1st for two years, the second a little less and we had a lot of infections with it.

They are hard to keep clean over a long period (as visible in pic of old peg), unlike the mic-key button which is changed about every 3 months and the tubes are separate.
Anyway back to our latest hospital excursion, which didn't go smoothly from the start. We were in Hospital the day before surgery as Geoff needed a Barium meal so that they could use it the next day for the placement of the Peg. Apart from hanging around for the Barium meal that they weren't sure if we were going to have, they also decided that they wanted his bloods done, something we didn't want doing till he was under the anaesthetic as Geoffs veins aren't easy for the Doctors to do and so causes a lot of stress so is a lot easier when he is under. We or should I say my O/H won out as we had to go to the head gastro man to overrule them.
The Locum who was dealing with us, was going through Geoffs medical history, and when we mentioned his open heart surgery, Shes said are you sure? yes my o/h said I chortled and she asked to see the scar so my o/h showed her the scar, if you can have open heart surgery without a scar I would like to see it. She also thought that she had all of Geoffs notes, she obviously doesn't read very well as I looked at the front of the thick file she was holding and it clearly said part 1 of 3 !
On a lighter note in the 'Otel' as Geoff calls them, he finds it quite funny turning out the bathroom light while one of us is inside, which he finds 'Bit funny'.
And now to the Day of Surgery, we were 1st in the afternoon slot and Geoff didn't get any food from 0700hr in morning or fluid from 1000hrs. Unfortunately his slot was delayed and so didn't go in till 2.5 hours late at 1600hrs. Going under the anaesthetic was the easiest he has gone under. with no kicking.
The operation went well and he came out with a shiny new Peg, we just couldn't use it for 12 hours as Geoff couldn't have any fluid, so had the i.v overnight.
And so ends another 'Geoff mini-episode ' with us managing to get out early and home by 1000hrs

Peg Not a Button!

2007-12-07T21:43:00.001Z

As I said. Don't ask me why as not really sure YET! Unfortunately due to the method used, which was Radiology he had to stay in Hospital for the night. Shall embelish on this tomorrow when we get home.

No Pictures Please

2007-12-06T08:14:00.001Z

Geoff was unavailable for comment about his upcoming Button placement tomorrow. More news as it happens from mobile zmike.

Buttons Button and more Buttons

2007-12-03T15:08:00.001Z

Just thought I would throw in the pic of Megs new hair colour.
So we now have a Hospital bed for Geoff and one surgery time, though they are waiting to see if an earlier time comes in. If not it will be Surgery on Friday (that's this Friday) . At least they are sorting the bed out first this time, well I think thats good.
We should know by 1700hrs today whether we will get the earlier Surgery date of Wednesday. Does this sound Muddled ? does a a bit to me.
Well I should be able to try out some Mobile Blogging later this week from my phone as have found out that it has that option. Doesn't that sound fun to you ?

Tonsils to be gone soonish

2007-11-30T23:13:00.000Z

Well we are back from out VPI examination and they are happy for Geoff to have his tonsils and adenoids out, but as they said breathing wins out against speech everytime. Not that they for-see any problems but it does leave a big hole at the back of the palate when the adenoids have been removed, so will involve a bit of re-learning for Geoff.
So what did the VPI examination involve ?
1) firstly he was videoed while speaking different words.
2) Then he had an x-ray video(haven't seen one of them before) while speaking different words, It is amazing how quiet he gets when asked to talk in Hospital, compared to how noisy he can be at home with his siblings.
And so we are waiting for his tonsils and adenoids to be taken out, but before that we expect his button (G-tube) , as we have been given another push for it from the Cleft Consultant, and are expecting next week.

eek! Ng-tube change

2007-11-28T21:21:00.000Z

Well it wasn't good today as I couldn't get anything down Geoff's Ng-tube, it was completely blocked. So he missed two feeds, before the community nurse came around and replaced his ng-tube, we could of done it ourselves but last time it got quite stressful for Geoff and Us that we thought we would let a professional have a go.
Even the nurse had trouble putting it down, which we now believe maybe because of his enlarged tonsils and adenoids. Would be nice if he gets the button in before we have to do that again.
With the VPI examination tomorrow we will be seeing the Cleft team, so may hear about when his tonsil and adenoids will be coming out.

Looks like New Year New Button

2007-11-27T16:21:00.000Z

Well we have been hanging on till 1600 today for the final NO, and we got it. Well us and 4 other families, whether this puts us to the front of the next list I don't know!
So that will mean a ng-tube change very soon as it is tending to block up a lot now and takes a lot of pressure to clear it with a 60ml syringe, and me pushing it against my chest.
Still going up for the VPI examination and X-ray on Thursday,

Velopharyngeal Incompetence (VPI) Examination - VPI is evident when quality of speech is too nasal or excessive nasal air escapes during speech. We provide individual assessment to determine what treatments may help reduceVPI.

So we will have to see what those results will mean!
And now I shall go and unpack

Waiting for a Bed !

2007-11-26T13:05:00.000Z

Been a bit quiet lately, well apart from the usual shenanigans with appropriate wear for my daughter. That is trying to get her to take a coat and bag to School .
We are on tenterhooks at the moment because although we have a surgery time for Geoff, we still do not have a bed for him. So no bed no surgery, and then it will be the week before Christmas for the Operation .
Be nice to find out before tomorrow morning, as we are off to the Hospital at high noon.
With all this hanging around and waiting not had a chance to do anything for Christmas yet, so better get on the Internet and order something
UPDATE
Well we will have to wait for tomorrow, but it looks like as no bed available. Bit of a set back and it also means that we will have to change ng-tubes, something we didn't want to have to do as it is quite a stressful experience.

I think I should cut back on the smilies

Hair today Dyed tomorrow

2007-11-18T21:47:00.000Z

Well not much going on so we dyed our daughters hair, second time and not as much fun as last time, as then we both got to use crochet needles which she didn't enjoy.( though we did )
The dark splodges were supposed to be tints of Blue, but it didn't quite work

Geoff suffering from irritation from the ng-tube which is causing sneezing and blocked nose especially at night. Not surprising really with a tube down your nose 24/7, I've been through the experience of an ng-tube and I didn't like it either. pulling it out in the early hours of the morning in hospital.

Could of told us that on the phone

2007-11-14T21:14:00.000Z

Well what a wasted day that was, cos we really need pointless trips up to the London Hospital. First of all our routine was put out as they weren't doing the Bedford burger in the Bedford Hotel due to some function, so I had to settle for a Aberdeen Angus burger from some pub whose name I don't remember.

We went up for the CT-scan results, which were good in a way as the problem with his apnea isn't to do with a blood vessel laying across his airway, so that means he won't need his chest cracked open anytime soon. So as I said in the title they could of told us that on the phone, I mean we were in with the Consultant for only 5 minutes ! He did say that we could see our Consultant but didn't seem much point, at least we didn't think there would be.
Geoff got to see the goats again, and got to stroke one this time, the goat we are now calling

Bert, it seemed like a good name.
As we saw the Consultant at 1600hrs and as I said only for 5 minutes, we ended up in the rush-hour traffic though we did get a seat on the train this time.

And so it goes on with an appointment with Renal sometime next week (read back and you will see that this was coming). A pity that you can't claim rail miles as we seem to be travelling up to London quite often.

Trying to get Geoff to sleep tonight took a bit longer as he likes his routine and with all the Christmas stuff going on in London, Geoff wanted to talk about Father Christmas and not wanting to go to sleep, still in our bed.

Oh I almost forgot, well I did forget and have had to come on and edit. As the apnea is not to do with the blood vessel, they are going to have to go and remove part of his adenoids and maybe his tonsils, only part of his adenoids as it can cause problems with his cleft palate and his newly acquired speech, thats another day but not too far away though.

Countdown to Button insertion

2007-11-12T15:46:00.000Z

Well good news of sorts. we or Geoff that is will be getting his Button re-done in two weeks time.
So that will be 2 nights up to Hospital again on the 27 and 28 November.
Can't wait as we will get our bed back, He does tend to take up most of the space probably as he isn't so little anymore.
As it will be a new hole this time, (last time it was a change from a peg to a button) He has to have a Barium meal the night before. No I don't know exactly why at moment, just pleased that he will be getting his button back.
More news hot off the press

We want a new Button for Geoff

2007-11-09T22:40:00.000Z

Well no news yet and as its a Friday, that's it till sometime next week until we hear if Geoff is going to get a new Button before January. Not that we haven't been trying to get it sorted this end, Today my O/H did quite a lot of phoning and even got put through to the Surgeon while he was operating in the theatre eek.
Today I questioned Geoff if he would like to sleep in his bed tonight and he said, Button! He is not happy with the ng tube and wants his Button back, and so do we though I don't think he realises that he will have to have another General anaesthetic to get it.
We have another appointment coming up on 29 November for a VPI x-ray , which is to check his speech and it won't really help, having an ng tube down his throat, so we have been told. Hopefully these things including his need to go on oxygen at night will move him to the front of the queue.
That's all the news at the moment.

Geoff needs a bigger Shelf

2007-11-06T21:37:00.000Z

Another trip to The Hospital and another souvenir for Geoff's shelf, not that there is any room left on it, and the way things went he will be getting a few more souvenirs this Year.
The plan was to have Geoffs Mic-key button put back in and have a CT-scan, but it didn'twork out like that.
How it did work out is this:
The morning of his surgery the ng tube that was keeping his stoma site viable, came out and it wasn't possible to get it back in. But this turned to be of little consequence as they would not of been able to put the button in, due to the CT-scan room not being suitable for that type of surgery. A bit of a pity that we had been told otherwise and it was a bit depressing to learn that we would have to use the ng tube until we get another slot for surgery, which at the moment is looking to be January.
After 8 hours with no fluid or food, he finally went in for surgery and with the pre-med already administered it was a bit easier to gas him, but not much. While he was in Surgery we popped over to the pub opposite and had a glass of red wine. Only to be interrupted by a phone call from the Surgery Team asking if Geoff had problems with his kidneys, which he does. Mind you we saw a renal Consultant about 2 weeks ago and he didn't think we would need to be seen again, though he did admit that he hadn't read Geoffs notes. Will be interesting if it is him we see again as, we have been referred to renal again.
So having put a scare on us, they continued with the CT scan.
After surgery we went to the recovery room, where Geoff was awake and being held by a nurse as he gets quite upset. In the ward we were told that they were going to rush his bloods through and they didn't want us going home until they had his results, so luckily we were staying another night.
We are now safely home and my o/h has been on the phone all day trying to get an earlier slot to get his button back in, due to it holding up his oxygen that supply that he should be having at night.
Oh and one funny thing, when we were on our way out of hospital I rushed pretty quickly into the lift, and an automated voice told me that the lift was overloaded, I don't think I weigh over 1000 kilos yet ...

Geoff did like the Goats over in Coram's Field, but they ran away when he tried to stroke them.

Why is it that we always end up on the end of the surgery list ? would it help to change my surname to one that starts with an 'A' .

After Sleepover Cleanup

2007-11-03T08:49:00.000Z

Well it went as badly as expected, with I believe the Neighbours coming round in the early hours and threatening to call the police. I was a sleep in bed so it didn't disturb me much, what with my convenient blocked ear to the world.
Shall enjoy cleaning up, just glad that we don't have carpets. Though how you get chocolate fondue over the wall I don't know (well I do know, you let 12 year olds have it ).

Done Neuro now Zero

2007-11-02T23:32:00.000Z

Don't ask me where that title came from, just one of those appointments which doesn't do anything.
It was a late appointment with a consultant at 1500hrs, I know it doesn't sound late but when you have to get up to London Then back during the rush-hour. that makes it late!
What did we learn ? That she would like to wait until after the respiratory team have done there investigations so as not to muddy the waters. I can't say that there have ever been any clear waters around Geoff's medical condition ( she did mention epileptic a couple of times).
And so we are back to the waiting game, which is better than some advice we were once given from one of our Top Consultants, which was 'The Cupboard is bare' and 'We will have to Suck it and See'. Immortal words which I just can't forget, sorry can't tell you who they came from (me grinning).
As we are. or I am talking about Things people shouldn't say, our health visitor said once that could I put Geoff on the scales as she doesn't like picking up the skinny babies, bet you don't believe it but it is true. She dropped a few Clangers but I will have to consult my O/H to find the others. There is one other that I remember from either the health visitor or Disrict nurse. that she knew a photographer who could make his ng tube invisible in the photo's ! lets just erase all our past then...
While we were squashed up on the bus and train traveling home, didn't we wish that we had taken the opportunity to stay up until our Monday/Tuesday appointment.
Instead as we have come home, we have had to suffer a girl sleepover party and you don't want to go there. I blame all these sleepovers on the American teen shows. but I will stop there 'no blame game' here.
So it is Clean up after the party tomorrow, then up to London on Sunday for two nights. Geoff has not been informed yet of his upcoming operation, as that would not help him.

Kids back to School

2007-10-29T20:10:00.001Z

Well two of them are back, one to college and one to school, so that makes it very peaceful indeed.
Geoff won't be going until they find more funding for his Schooling and as the panel doesn't meet for another 2 weeks, it looks like the New Year for him.
Mind you with the appointments at hospital coming up, he wouldn't fit much School time in.
At least we have a date for his button to be put back in, the same time as his CT-Scan. So he will only have to go under a General once in the week, which will be bad enough.
Oh and the appointment that I couldn't remember at the end of November is with the Cleft Palate Team, lets wait and see what that entails.
Thats all for now.

Of Things To Come ( and I don't mean Christmas )

2007-10-27T22:49:00.000+01:00

The NG feeding is ongoing but he don't like it, no he don't. I have to make sure the flush water isn't to cold as it makes him do a little dance. We've had him on a 50/50 feed today (paedasure and water), back on full feed tomorrow
Hopefully his button will be put right on Monday. come on Tuesday at the latest please. Though I don't think he is going to like them doing it as I think they will have to stretch the hole, though no doubt he will have a local. Failing that it will be a full General and into surgery ( god it sucks and keeps sucking)
Because we have appointments flying out of the woodwork, i.e appointment with the Neuro guy on late Thursday with the follow up CT-Scan on the following early Monday. we will have to stay up 2 nights due to the early CT-Scan and 2nd night due to general anaesthetic, and yes we have considered staying up from Thursday till Tuesday.
The general will be no fun at all for him as we have to restrain him as they gas him. Just hope they don't have us hanging around in the pre-op room before they gas him, like they did last time.
As soon as we go past outpatients we start to get trouble, cos he knows he won't like whats coming and we will get from him : Why, repeatedly. and how can you answer that? To make you better doesn't work as we have to keep coming back to Great Ormond Street !
On a cheerier note my Daughter is planning her 13th Birthday party for next June, not at home as we upset the neighbours at the last party she had (don't know if we are the reason that they are moving house ?). Well she is not going on about Christmas now !
Oh and another appointment the end of November, what it is for slips my memory and can't be bothered to open up my Calendar program at moment.
With the hour back tonight I shouldn't have to worry about staying up late. but I don't think my 5 year old son understands BST and GMT.
At least the Half Term is over as could do without the kids fighting during the day and evening LOL.

Button Problems

2007-10-27T13:32:00.000+01:00

This was my 4th button change so wasn't expecting a problem, but it all went horribly wrong.
I tested the water and it was obvious that is had burst (only been in 6 weeks), so I got the new one ready and had his sister holding his hand.
Withdrew the old button and tried to insert the new button, but it would not go in. I think it went in about 1/2 cm and wouldn't go anymore .
Well I started to get hot and stressed and after a few tries decided to put the ng in the hole a give it a rest and take advice from the hospital. They suggested we leave it for an hour as he had recently had food (wish I had been told before or I would never of done a change after a feed). So an hour passes and I try again, My O/h tries again and we have to admit defeat and took more advice from Great Ormond street this time, and they said that it would be okay to leave the ng in overnight and get hold of a smaller button the next day as the local Hospital didn't have any mic-keys of any size in (Great Ormond street did suggest that our local hospital get a taxi to go up to London get a new Mic-key and bring it back, not really likely was it).
So he goes overnight without his usual feed. sleeping in our bed, as he does when not feeling well.
In the morning when the nurse arrived with a smaller button, we found that, that would not go in either ( a bit late no doubt). Unfortunately the nurse hadn't bought a NG feeding tube with her and as they were busy she didn't get back to us till 1700hrs, so that was 24 hrs with hardly anything to eat. We then had the joy of putting an NG tube down a kicking and screaming 5 year old, who didn't remember that was how he was fed for the 1st year of his life. Well my O/H managed better than me to get it down, and he was not happy at all. So we settle down for another night with him in our bed with a glucose mix to rehydrate him and start feed again tomorrow. Why do things always go wrong towards the weekend ? Hopefully get into Great Ormond street on Monday or Tuesday and get his Button put back in. Oh and his Oxygen turned up this morning, won't start that tonight, bit defensive about his nose at moment and I don't blame him as I once had the pleasure of an NG tube and didn't enjoy it one bit.