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Kaiden and the big move

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us_flag_map_TAlthough we were worried that the flight would bot be fun with Kaiden I was pleasantly surprised that it was only marginally stressful.


Although it was a real trial getting visas and whatnot sorted, Kaiden and his sister di not really care as they got to stay with their grandparents.
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Figure: Kaiden’s Visa
Kaiden loves his new house and especially his large playroom. It is especially good as the weather here is only marginally better than Scotland Smile
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Figure: Kaiden’s new house
Kaiden started making fantastic progress as soon as he got here. Most of that I am pretty sure is just coincidence as its getting to a few months after his operation, but some is due to the space and the time that his mum has to spend with him.

Figure: Kaiden and the Stairs


Figure: Kaiden and the chair
This move has been very good for Kaiden, not only does he have access to lots more room, but the things available of him here are never ending. We have been in touch with Kindering as well as Seattle Children's.
The think that is getting us a bit is the cost. Even with health insurance cover we end up paying the first $3000 (~£2000) up front before the 80/20 kicks in. Even then we need to keep paying 20% until we have paid a total of $7000 (~£5000) before the Insurance pays 100%. And that is with my company paying for me and an $800 per month premium for the rest of the family!
We are still figuring it out, but we have accepted the fact that we need to budget for a $7000 per year expense.

Kaiden and the first check-up

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We had Kaiden’s 4 month check-up today and everything went very well indeed.
Kai had been doing fantastically well, and even though he lost all of the his words after the surgery, he has started brining it all back together.
p.s. This post was written WAY after it should have been…

We have been thinking about how to quantify Kaiden’s progress and can only think to do it using an age that we think he is currently at. We think he is about a year behind where he should be and there is a lot of hospital appointments going forward.

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Figure: Kaiden, Evagelina and Truffle at the World Bagpiping Championships
Kai is not even dreaming of walking properly yet, but he is starting to do more. Specifically he has been trying to shuffle up and down the furniture. He does have physiotherapist appointments, but they are more about training Jadie on how to do the physiotherapy herself and monitoring his progress than actually doing anything with Kai.
Although this is disappointing, it does mean that he gets way more one-on-one care as Jadie is always there.
With the bombshell that we will be moving to the USA still fresh we wanted to get as many appointments out of the way as we could before we go. It may have taken us a long time to figure out the US system and many of them we due just before we went. So we booked a many as we could to see the Neurologist and the Endocrinologist.
Because Kaiden is now a LOT less lethargic than he was when  we had the first MRI, he needed to be under a general Anaesthetic. As we have had so much trouble getting blood out of Kaiden in the past we wanted to make this as easy as possible we got the bloods for the Endocrinology Department  tests taken at the same time as the ones the Neurosurgery Department was taking while he was under for the MRI.
Well, getting Kaiden to sleep was one of the most brutal experiences so far. It was very traumatic for him and us. But the results were fantastic.
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Figure: left - Pre-operation;Right -  post operation
You can see that the new scan is much better than the old one.
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Figure: left - Pre-operation;Right - post operation
You should be able to see that his brains are a lot less squished now which means that, although it is difficult to see, there are a lot more ridges.
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Figure: This time we have the full scans
Because we are heading to the USA we will be needing the full history and Scans to take with us. So I have better pictures Smile
Jennifer Brown told us that although Kaiden had the worst case of Hydrocephalus that she had ever seen that he had made exceptional progress and that she had no problems saying that there would be no difference between Kaiden and another child in a few years time.
She even told us that from the day she saw his scans she wanted to operate immediately, but that she did not have the capacity. If you remember we had to wait 4 weeks between the Scan results and meeting her, and another 2 weeks to operate. This is our one and only problem with the care provided by the NHS…. there is no slack.
Wish us luck in the US…

Kaiden and the worrying moment

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After we brought Kaiden home he was very crabby (irritable) and was holding his head often. We called the doctors, who called Dr Shaik and although they allowed Kaiden to take both Paracetamol and Ibuprofen at the maximum dose they were not happy.
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Figure: Kaiden at home, but on lots of pain killers
I was going down to London for business and the night before we got a call that they wanted to scan Kaiden to see if there was any problems. While I headed (driving some 450 miles) to London, Jadie was to take Kaiden into the hospital on the Wednesday.
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Figure: Lovely weather for the trip to Reading, London

Wednesday 21st July

After the scan Jenifer Brown, the neurosurgeon, was round to say that the CT Scan had reviled that the fluid that was supposed to be draining was in fact pooling between his skull and his brain.
Now, although this was deemed to be bad, Jenifer had never scanned a patent after only a week, so did not know if this was just part of the normal rearranging of the brain. There is no air in your skull, so if the thin walls of Kaiden’s brain are moving around (as horrible a picture that presents) then the fluid would build there.
Jenifer opted to wait for a few days and scan him again on the Monday. If the scan showed the fluid dissipating and Kaiden was well then they would do nothing. If everything was not OK then they would operate immediately.
I decided that it was prudent to head strait back up to Glasgow and I arrived on the Friday afternoon and went directly to the hospital.

Friday 23rd July 2010

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Figure: The same lovely weather on the way back
I needed to relive Jadie so I stayed in the hospital on the Friday and Saturday nights. We were back in Ward 66 at the Southern General and Jennifer had said that although she would get into trouble, she would make sure we stayed there.
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Figure: I love my drum
Everyone at Ward 66 is fantastic and Kaiden and I had great fun playing, watching movies and watching the older kids play the Wii and PS2. They have a room with a shower set aside for the parents and a Parents room for preparing food and getting away from the ward. I could not praise Ward 66 more, not was there much to complain about. The food was really the only thing, but with the ability to make your own in the kitchen it was really a mute point. They don’t feed the parents anyway, only the kids.
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Figure: Who needs a wee sleep, Kai does
I had forgotten to request Kaiden’s meds and he did fantastically without them. He was tired, but at least some of the would be due to boredom. I was surprised how well he did without any pain killers and it seamed that things were on track. One hiccup was on Saturday morning when he threw up, but I may have sat him up too quickly.
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Figure: I love In the Night Garden
I headed home for Sunday night and Jadie took over. Evangelina (Kaiden’s older sister) was staying at the grand parents and they needed a break so I took her home, and dropped her off again to head back to the hospital on Monday morning.

Monday 26th July 2010

This was exactly two weeks after the operation, and for a boy who could not even roll over you would not believe what he did.IMAG0479
Figure: OMG, that's not just standing
Since his operation, in fact within an hour of it, he has started to pull himself up and seamed to have much more control over his legs.
Figure: Kaiden walking for the first time two weeks after his operation
The took Kaiden down for a CT Scan around 12pm and we then had to wait anxiously for the results. I managed to catch a sneaky look at the scans and they looked fantastic compared to the pre-operation MRI.
When Jennifer Brown came up to see us, she said that all the fluid was being absorbed and that she could not believe the difference in Kaiden in just two short weeks. She said that we would still have little niggles for the next month or so, but that everything looked fantastic.
Jenifer was happy to send us home, so we said our goodbyes to Staff, patents and parents alike and headed home.
The only thing we have currently noticed is that although Kaiden has always sleeped with his eyes open just a crack, this is ridicules Smile
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Figure: Kaiden fell asleep on the way home
Since we have been home he has been into everything and trying to walk. We are very impressed with his progress. Next appointment is just under 4 months…

Kaiden and the homecoming

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During the night Kaiden decided that he did not like his dinner and threw up all over his bed. Luckily the nurse had just arrived to do his observations (9pm) and we were right there when he did. They changed his bed while I got him bathed and changed. After than we played for a while on my bed, and that was when the rest of his dinner arrived. IMAG0462
After another change he reached often but had little to come up. I asked for the on call doctor who gave him a check-up and we though it could either be a bug (Jadie, Eva and I had had one) or post-operation puking. I got him to sleep around 11pm and he slept right through from there with the exception of the observations.
Wednesday is the day of the grand rounds at the hospital. This is where many of the departments and wards get all of their doctors together and visit all of their patents.
We were expecting a visit from the Ward doctors, the endocrinologist and the neurologists. Staying with Kaiden overnight was good as I was able to speak to them all and find out what was going to happen. The ward doctors were happy with his progress and his four hourly observations had stopped that morning. Kaiden was a little grumpy as he had been woken every four hours through the night for the last two nights and he, like his dad, loves his sleep.
Early afternoon was Dr Shaik’s grand round and this was the reason we were at Yorkhill. He was happy with Kaiden’s progress and the results of the bloods had come back. Even though Kaiden’s pituitary glad had been squished, the only thing they found was a low level of growth hormones. This was fantastic news as there were lots more nasty things to worry about than growth hormones. Dr Shaik explained that the results could just have been low on the day, but he does expect there to be a problem. He wants to see Kaiden in three months to rerun the tests, but other than that, we could go. Woohoo!
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As Kaiden had been sick during the night, Dr Shaik wanted to make sure he could keep down his dinner before letting him out. he felt that the sickness was post-operative
We had to wait for Jennifer Brown to see him anyway, and by the time she came round at 5pm he had eaten. And it stayed down.
Jennifer was also so happy with his progress that she said we were good to go. She explained that he would have an air bubble in his head that would go away over the next 2-4 weeks and that it would just be a minor annoyance for Kaiden.
We packed everything in the car, is amassing the stuff you end up with and headed home. About half way home I noticed that Kaiden was pale and he did indeed throw up a little in the car. He had never been car sick before.
When we got home Jadie called the Doctors for some advice and she called Dr Shaik. If Kaiden as sick again we had to go back in, but he did not…

Kaiden and the political shenanigans

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In my last post I talked about our experiences on arriving at Yorkhill Children's Hospital and that we had no idea why, when there were many other patients recovering after an operation on Ward 66 at the Southern.
Well a consultant did come in and explained why, but I do not think that he would want his name in here. Politics…
It seams that the surgical ward at Yorkhill is run by the anaesthetists and they do not like that post operation patents are staying up on Ward 66 at the Southern and they have been putting pressure on Ward 66 to send patients down to the surgical ward.
This I think is ridicules as the neurological patients that are on Ward 66 do not tend to be unwell as with most operations and the surgical ward is not setup to handle those kind of patents.
Kaiden was settled in on Ward 66 at the Southern and with his surgeon only a building away was safe as well. It took me 20 minutes at an off peek time to get from the Southern to Yorkhill and I would not want to have to wait if there was a problem.
On top of that the facilities at the Southern are far superior to Yorkhill. With the construction of the replacement hospital at the Southern under way you can see that there has been nothing spent on the upkeep at Yorkhill.
There seams to be an amount of const saving at the expense of patents. The surgical ward takes patents from all over, so when they arrive they do not know who anyone is. On of the fantastic things about being on Ward 66 was that we had the same care and staff as we did pre-operation. It just makes the whole process slicker if you don’t have to relearn the where and the who. There is enough going on.
Politics should stay out of the way of the health and wellbeing of patents at all times.

Kaiden and the hospital transfer

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Kaiden was transferred to the surgical ward at Yorkhill Children's hospital on Tuesday afternoon, and it was a very traumatic experience for both Kaiden and Jadie.
When the Ambulance arrived I took Eva in the car and Jadie, Kaiden and one of the Nurses from Ward 66 headed down. Now, I don’t know about you, but I would have thought that an ambulance sent to pick up a 18 month old child would have some sort of child seat. But no, all they could offer was for Jadie to be strapped in to a folding seat and for Kaiden to sit on her lap. They did offer to have Kaiden restrained on a gurney, but if you have any children you would know that that could never be an option for a conscious child. It was most frustrating as I was travelling to the hospital with Kaiden’s car seat in the back.
To be honest, if I had know that this would have been the situation I would have refused to allow it. To often do we just go along with things as parents with the NHS. If you would not let your child travel in a car without being safely strapped in, why would you allow it in this case!
Anyway, when Jadie arrived at Yorkhill she was directed to ward 4b, and the Nurse from the southern remarked that she did not understand why we were being sent there as we were expecting to go to Dr Shaik’s ward which was 7c.
Jadie were about half way down the corridor to the nurses station when a rather heavy set Nurse shouted “Go in there”, which directed her to another dingy room.
This was a rather disheartening arrival which was then compounded by someone with no name badge coming and directing her to put Kaiden in a chair to be weighed.
It was just after this that Eva and I arrived to find Jadie very upset and near to tears at both the treatment and stark contrast in the look of the ward compared to the one we had just left. It was like night and day.
Anyway, we settled in and as it was dinner time for Kaiden I went hunting for somewhere to heat up the lovely beef stew that my mother had made for him.
Luckily there was a microwave in the kitchen opposite  and I asked at the nurses station if it was ok to use it. “No” was the answer, that microwave is for staff use only and there was no facility to heat food for patients or parents. WTF!
This was most annoying as there was no way I would let Kaiden eat the hospital food. I insisted and they would let me use it this once.
It has got to be pretty common for parents to bring in food, they cant all let their kids eat the crap that is served! Some facility to heat up food should really be provided.
At this point, with Kaiden wanting to have a wee look round, that Jadie came out of the room with an inquisitive little boy who was probably looking for some nurses to hug. This was when the next bombshell hit as the same nurse as before shouted at her to get back into the room and that she could not leave. WTF!
Apparently as we had come from another hospital Kaiden could not leave the room until his swabs had come back negative for whatever it is that they look for, MSRS and whatnot. So when a nurse came to take the swabs I asked when they would be back, and was told that it could take 48 hours. WTF!
With Kaiden eating his dinner, Jadie was so upset with the situation that she wanted to either take Kaiden back where we came from, or home. I managed to convince that I would stay with Kaiden and see could go home and get some sleep with Eva.
I have to say that this was a very harrowing experience for us and for Kaiden as he would see us upset. For a wee boy on the mend who wanted to play and interact with other people and being allowed to play and move around for two days after his operation to then be restricted to a small room was ridicules.
We were on the surgical ward which was really set up for patents recovering from very serious operations. Most of the kids here were confined to their beds anyway and they had very little facility for someone for whom you would not know had had and operation if you could not see the stitches.
We really should never have been moved down to that ward and no one could explain why.

Kaiden and the recovery

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Maybe because Kaiden has over done it on Monday , or maybe because he had picked up the stomach bug that Eva, Jadie and I had suffered from, he did not keep his dinner down and had thrown up during the night.
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The next day he was a little groggy and grumpy. I feel this was due to the Anaesthetic and painkillers wearing off as well as the bug. The staff at Ward 66 in the Southern General were fantastic and the facilities were good. There was a nice parents room, kind of like a break out room, which had a fridge and microwave. As you know the hospital food is not great and we do not feed Kaiden chips twice a day at home, so why would we here. The family made some lovely dinners for Kaiden and Jadie which made them feel that little bit better.
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Figure: Kaiden having a wee sleepy
The day after the operation Kaiden had his dressing removed and got his first proper bath. This gave us a good look at his stitching, and I have never seen a neater job, nor a smaller incision for what he had. We love Mss Jennifer Brown (our neurosurgeon.)
Although Kaiden was more sleepy today, he still had time to play with the other kids, and he loved getting huggies and carries from the Nurses (Kaiden likes nurses.)
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Figure: How neat is that scar going to be
We were told that we would be moving down to Yorkhill Children's hospital, and that would be by ambulance and we would be going to Dr Shaik’s endocrinology ward. We had been over to see Dr. Shaik’s before and had stayed on his ward. He is very nice and his staff are exemplary as well.