Kaiden and the first check-up

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…

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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.


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.

Figure: left - Pre-operation;Right -  post operation
You can see that the new scan is much better than the old one.

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.

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
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 homecoming

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.
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!

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 hospital transfer

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 secret apointment

What we were not expecting when we arrived at the hospital for an appointment to take blood was an overnight stay!
The Southbank clinic had arranged for Kaiden’s bloods to be taken to test for a number of things that could be affecting his walking and gross motor skills. They mentioned some enzymes and a chromosome check. The endocrinologist  also wanted to do checks for hormone levels because of the damage to his pituitary gland. He said that the would make sure that the appointments were combined.
This appointment was made over the phone so when we arrived at Yorkhill today for our appointment we went to Ward 1C as instructed. The nurse who met us said “You should be in 7A!”. Well ok, that could be an easy mistake, one we could have made ourselves. “We have a room ready for you”. Hmmm, what?
Turns out the the appointment for the water deprivation test the endocrinologist had discussed was made for today, but no one bothered to notify us! Its extremely lucky we had an appointment already that day. No wonder 30% of appointments are no-shows, I bet at least half of those are due to a lack of communication.
We did not want to re-arrange the appointment as we are seeing the neurosurgeon next week and we want as many results as possible for her when we meet. The less roadblocks the better.
We were at the hospital for a 2pm blood taking and now need to change plans for an overnight at 4pm. Not enough time to go home, so off to Asda to buy jammies for the wee man and wife along with the usual trappings of an overnight stay at the hospital.
The new plan is for Kaiden to stay overnight and to fast from 4am to get bloods done at 9am. Hopefully he will not wake up after 4am for a drink, otherwise there might be a screaming match. He needed to get a drip attached so they could take the bloods easily multiple times and the nurses would also monitor his fluid intake and output.
There were two very nice doctors including one we had seen before on a visit to Yorkhill with Kaiden at 3am. Jadie commented that the other looked too young to be a doctor, but that is just what happens when you get older…everyone else looks younger. They tried to get the drip into Kaiden’s arm first and I have never heard Kaiden scream more than he did then. It was not the drip, it was having his arms immobilised that terrified him the most. This was very distressing for us as parents and Jadie especially as she insisted on holding him.
With Kaiden not really using his legs and his arms being his main mode of expression I can understand why he was so distraught.

Although they inserted the drip it stubbornly refused to  dispense blood and they had to remove it. We were dreading another attempt, but they decided to go for the legs. This proved to be the best decision and Kaiden only cried when they were actually inserting the needle, before and after he was giggling and laughing. He pretty much ignored the vice grip on his legs and let them get on with it.
He did however put on a rather strange expressions when a nurse came in after his bath and attached a bag to his winkle (Jadie friendly word) so they could measure output.

I think that expression is surprise, he is too young for anything else!
Kaiden will be discharged tomorrow so I will be picking him and his mum up early afternoon.

Kaiden and the endocrinologist

Today we were at Yorkhill Children's Hospital to see the endocrinologist (pituitary doctor) and we had yet more bad news. We were hoping that Kai’s pituitary gland would be unaffected. Sadly not, and we saw on the scans that something that is supposed to be the size of a pee has been squished into a little flat horse shoe shape.
They need to do a whole lot more tests to identify the impact of this, but your pituitary is responsible for stimulating the generation of lots of hormones within your body including Growth, Thyroid and Testosterone. Apparently the most susceptible cells in there are those responsible for Growth, and they do not like being squished.
So we are looking at problems with growth from the age of 2 and potential thyroid issues as well as issues when Kai reaches puberty. This will be a long hall and he will probably need to be seen by an endocrinologist at regular intervals for the rest of his life.
Next week is the eye specialist at Yorkhill…I hope not more bad news…