Kaiden and the Arachnoid Cyst

Kaiden and the big move

2010-11-28T10:21:00.000-08:00

Although 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.

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

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

2010-10-28T14:26:00.000-07:00

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.

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 worrying moment

2010-07-27T05:51:00.001-07:00

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.

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.

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

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.

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.

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.

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.
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

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

2010-07-14T10:32:00.000-07:00

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 political shenanigans

2010-07-14T02:00:00.000-07:00

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

2010-07-13T15:32:00.000-07:00

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

2010-07-13T10:00:00.000-07:00

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.

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.

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.)

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.

Kaiden and the operation

2010-07-12T10:00:00.000-07:00

Today was the day of the operation. I arrived at the hospital at 7:30am and Jadie and Kaiden were all ready. We were taken down to the Anaesthetic room to get Kaiden off to sleep and although they usually only let one parent in to the room, we managed to blag both of us in.
Kaiden got a hug from him Mum and the Anaesthesiologist used his hand as a mask to get him to take the gas. Once Kaiden was asleep the Anaesthesiologist swapped hand for a mask and we put Kaiden onto the gurney and were ushered out.
We did not want to just sit in the hospital for 3 hours terrorising each other, so we headed out to pick up Kai’s sister Eva and take her out for a while.
We had been told lots of different estimates of the operation time from 3 hours to 5 hours, so we were actually surprised when only 2 hours later I got a message on my answer phone.

“That's Kaiden out of theatre and in recovery sooner than expected”

We managed to read many, many things into “sooner than expected” on the way to the hospital but once we got there we got the good news.
The operation had gone well, and with no problems at all. We got the call after a few minutes to go down and see Kaiden and we headed down to the recovery room.
Figure: Kaiden about 30 minutes out of theatre
Our very brave boy had not even cried when he woke up and although we had been told that it was standard practice to send all young children to ICU (Intensive Care Unit), they said that Kaiden could just go back up to the ward.

Figure: Kaiden has a red face from the anaesthetic
If everyone was surprised at his alertness 30 minutes out of theatre you should have seen how surprised they were after another hour!

Figure: Kaiden playing with his new fire engine

Figure: Kaiden only one hour after surgery on his brain

Just after this Jenifer Brown was up to see us and she explained that the operation went very well with no complications. She was able to put a big hole in the top of the cyst, but only a small one in the bottom as she was at the limit of the reach of the instruments and there was little room. This is good news as it means that we may be all done from the surgery side (fingers crossed).
She was happy for us to be transferred to Yorkhill Children's hospital to see Doctor Shaky the Endocrinologist, whom had requested the transfer. That Jenifer was happy to have Kaiden out from under her supervision so early was fantastic, but that the endocrinologist had requested a transfer does not bode well for the results of the earlier tests.

Figure: Kaiden only two hours after surgery on his brain

After that Kaiden has been very chatty and even tried to climb out of his cot. He could have been trying to stand, or the escape attempt might have been to avoid the hospital food (Chips serves twice a day for the kids! Remember the previously mentioned healthy policy of only diet fizzy drinks being sold on hospital grounds).
Figure: Contemplating escape
I left about 4pm to get Eva for a visit and once we got back they played for a while. Eva was very happy to see her brother and mum, but was very unhappy to leave. I think it must have been around 5:30pm that we left, just as the chips arrived.
Jadie called about 10pm to say that Kaiden has been crying for two hours and she could not quieten him. He had been crying so hard that he has split his wound (but not his stitches thank goodness) and the nurses were now prowling the corridors with him in his pram, which had entertained him enough that he stopped crying.
This I think is the result of Kaiden over doing himself after such a serious operation and that he would be very frustrated at spending another night in the boring hospital. When Jadie had first called I was quite worried, but on reflection its a lot for a wee man. I don’t know what he was running on all afternoon, but whatever it was it has run out.
Jadie called again at 11pm to say that Kai was sound asleep. So far, all is well and Kaiden has successfully had his Arachnoid Cyst fenestrated.

Kaiden and the sword

2010-07-11T10:00:00.000-07:00

The day before the operation (Sunday 11th July 2010) we arrived at the Southern General at 1pm to get the bloods redone that had failed before. True to usual NHS from we were asked why we came in so early and the bloods could be taken later!

Figure: Kaiden got settled in and found the TV
The only doctor on shift on a Sunday afternoon promptly arrives 4 hours later to take the bloods. An predictably enough insisted on going through the whole rigmarole of “try this arm” no!, Lets try the other one and so on. However this doctor managed to get at least some blood. This blood was needed for two reasons.
First for Typing, I guess just in case Kaiden’s blood type had changed since Friday, but more importantly to make sure that there is some compatible blood available just in case.

Figure: Kaiden was quite happy in thy play room
The problem was that the doctor did not think that they had been able to take enough blood for this test, but she convinced the lab tech to have a go. The doctor said that they could have the bloods taken once Kaiden was asleep before the operation to make it less traumatic.
While that was going on we decided to head out for dinner and took Kaiden out to TGI Fridays at the Escape centre and sat for a while to watch the snowboarders.

Figure: Kaiden with a sword balloon
When we arrived back at the hospital we were told what we expected, that the bloods needed to be taken again, but that the Anaesthetic Consultant was not happy to wait until the operation. By now it was quite late, about 8pm and we were worried that Kaiden would not get any sleep. The shift changed at 8:30pm so we made sure that the same doctor and she started where she left off.
After a few attempts and lots of screaming she managed to get double the amount of the last time.
This time it was OK (sigh)…
I headed home to get some sleep before the big day and Jadie stayed with Kaiden.

Kaiden and the bloody mess

2010-07-10T15:25:00.002-07:00

On Friday we were at the hospital for all the pre-operation things.
We were in at 10am for a day of mostly waiting around. Luckily the facilities for kids in the Southern General are fantastic, and Kai had lots of toys to play with.

Figure: King Kai
We had a visit from the anaesthesiologist which was good. He talked about the process and what would happen. It looks like only one parent is usually allowed down to the anaesthetic room, but it depends on the Anaesthetic Consultant that we get. Apparently the room is rather small, and if only one parent is allowed it will most likely be Jadie.

Figure: Something is funny
One of the junior doctors came in to take bloods, and we told them about the previous problems of getting blood from Kaiden, but they would not listen. So another traumatic time trying to get blood, which ended with a heal prick. Will they never listen?

Figure: All I need now is a beer
One strange thing was that when I went looking for some coke all of the vending machines has diet drinks only. Apparently this is the NHS’s attempt at healthy. You have got to be kidding, let alone the Aspartime in the diet drinks that is know to cause problems, they are still fizzy drinks. What a joke!
We had a visit from Jennifer Brown who again delivered straight talk, but in addition she said that in her experience and from having a good look at the scan’s she did not think that Kaiden would be affected intellectually in the long term. She said that it looks like it is just his gross motor skills that are affected. This is fantastic news, even though it comes with no guarantees. Time to head home.
Well, the hospital called a few hours after we had left the hospital to say the Kaiden’s blood was congealed and they could not run any of the tests. Going back at 1pm on Sunday instead of after bedtime as was the plan.

Figure: Cute as a button
So, Kaiden goes back into hospital at 1pm tomorrow and they plan to do the operation at around 9am on Monday.

Kaiden and the scared sister

2010-07-08T03:45:00.001-07:00

Jennifer Brown’s office called today and we now have a date for the operation. Kaiden will be admitted to the Southern General tomorrow (9th July 2010) and they will operate on Monday (12th July 2010). Jenifer did say she wanted to do it quickly…
When Kaiden is admitted to hospital tomorrow they will be running all of the tests and helping us complete all the relevant paper work that they need, we will be taking Kai home in the evening as the actual operation is not until Monday. It is better to have him home on Saturday rather than stuck in the hospital doing nothing. Then it’s back to the hospital on Sunday and they will operate on Monday morning.
It has been a long slog from the 26th May 2010 when he had his Scan and we were told about the Arachnoid Cyst, the Hydrocephalus and we saw the scans. It was only 2 months ago, but a frantic and distraught two months.

Figure: Afternoon nap with his big sis
Our current understanding is that Kaiden will be in for a week to recover, but that most of that is for observation and to prevent infections. The operation itself is not a “taxing” one on the body so he should be bright and alert as soon as the aesthetic wares off.

Figure: Kai & Eva having sleepy hugs
Kaiden’s sister Evangelina has been very worried about him, and for a three year old this must all be very scary. A couple of times she has said:

Why are they going to cut Kai’s head off (sniff)

It just shows what they pick up, and we had to explain everything, which she accepted just fine.
Now all we are wishing for is a happy & healthy baby boy, who makes a speedy recovery, with nothing holding him back from walking and talking…. here is hoping…

Kaiden and the Neurosurgeon

2010-06-29T13:47:00.001-07:00

Today was the day to see the Neurosurgeon. We took Kaiden to the Southern General Hospital for his appointment with Miss Jennifer Brown FRCS. We had heard from staff at the Southern that she did not have a good bedside manor, but that could not be further from the truth. She is just a strait talker, and by the time you get to see her, that is really what you need.

Figure: The Boy – Kaiden is a happy boy who is frustrated at not walking
She does not want to do a Shunt as she considers that the old way of doing things, but instead prefers to do endoscopic neurosurgery to go in through the high side of Kaiden’s head and make an incision in the top of the cyst. She will then push the endoscope into the cyst and make an incision at the bottom creating a channel for the fluid to escape.

Figure: The Arachnoid Cyst – The cyst is blocking fluid like a plug
If that does not work, which she thinks it will, she would do a second surgery to put in a shunt. Shunts tend to have a much greater chance of infection and rejection as you would have a little tube going from your brain al the way to your stomach. A Shunt can also be blocked and contains a little valve that can brake.
She answered all of the questions we put to her with compassion and with no nonsense that we can all associate with ignorance and uncertainty.
There is a 1% chance of major complications and by that Jennifer talked of cranial bleeds of which she has only seen 2 in 25 years of neurosurgery. There is also a 10% chance of minor complications but they are all manageable.

Figure: The Hydrocephalus - Fluid build up behind the cyst
Jenifer can’t give any guarantees that Kaiden’s gross motor skill will improve once the procedure has been completed as damage to those sections of his brain may already have been done, but she is confident based on previous cases that the outlook is good. At worst there should be no further exacerbation of the hydrocephalus and thus no more damage incurred. As Kaiden is so young it is difficult to tell what is late development due to damage and what is late development due to…well..being a lazy boy. In saying that she is very certain that being over six months behind in his gross motor skills is due to the hydrocephalus and the cyst.

Figure: The Pirate – At Kaiden’s first birthday he was a pirate
Baring any emergencies she plans to do the operation within 4 weeks which is fantastic news for anxious parents wanting things to start moving and but also fills us with fear and hope for the outcome.

Kaiden and the secret apointment

2010-06-23T14:41:00.001-07:00

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 wonky eyes #2

2010-06-22T03:10:00.001-07:00

It’s day 2 of the strange eye saga. We took the advice of the on call doctor, but only after my father had verified what he said.
It turns out that my grandmother was seeing the Ophthalmologist yesterday as well and here eyes were both still dilated after 5 hours.

Kaiden’s eyes have not gone back to normal this morning so I called the hospital and was told that there were only optometrists in and the real doctors get in at 9:30am.
What is this, part-timers-r-us at the NHS? 9:30-5? I wish…That's an hour and a half for seeing patents. They could see three more patents per doctor per day.
Anyway, I was put through to a optometrist and she said that children, and especially children with light eyes can take longer to get over the eye drops. But even she said “Next day”, which it currently is. Apparently there is a clinic in the afternoon, and if we are still worried to call back then.

Figure: This is with a flash going off! At least the right pupil is now working.
After doing a little work, I work form home, I had to look after the kids for 5 minutes while Jadie went to the shop across the road. Kaiden was outside, and it looks like his eyes are back to normal.
Remember we were told nothing of this possibility at the hospital, so we have had unnecessarily panicked parents for 24 hours because of a lack of transparency between the hospital and those responsible for the patient.
Panic over…

Kaiden and the wonky eyes

2010-06-21T09:59:00.001-07:00

Its now dinner time and we have noticed something strange about Kaiden’s eyes. Can you see what it is?

Figure: One eye is dilated
We checked both his eyes with a weak light and neither of them react to it at all.
We were not told that this would happen at the hospital, but they did put drops in so they could look at the back of his eyes. The drops we were told was “die” so they could see into his eyes, but a quick Google-Fu about ophthalmologists and eye drops implies that it might be apathetic. If we had been told it was antithetic I would have had a couple of questions:

What are the side effects?
When will it ware off? (we have all been to the dentist)

We phoned the hospital, but surprise-surprise everyone in that department has gone home. The on-call doctor dismissed our concerns and said that it should not be a problem and to bring him in in the morning if he is still presenting the same symptoms.
I am not so sure, it has been over 4 hours since his appointment and we have only just noticed this. Now, it could be we were just not looking for it and it has been like that for 4 hours, but I think it is something we would have noticed.
If they were antithetic drops then I am not worried and would leave it till tomorrow, but if they were not antithetic and were just die I would be worried.
I am currently debating on wither to take him down to Yorkhill A&E…
References:
Talks about apathetic drops: http://www.essortment.com/lifestyle/whattoexpectd_sfbd.htm
If you have one eye bigger than the other: http://www.eyecasualty.co.uk/maincontent1/introductiona.html

Kaiden and the Ophthalmologist

2010-06-21T06:52:00.001-07:00

We took Kaiden to the Ophthalmologist (Professor Dutton’s surgery) at Yorkhill Children's Hospital. When we got there Kaiden was very brave an was happy to get checked out and have some drops put in. The drops were to allow the ophthalmologist to get a better look at the backs of his eyes and see if there is any pressure on the optic nerve.
After a long wait we got to see the ophthalmologist: I do not know what it is, but light in the eyes is one of Kaiden’s pet hates and he screamed the place down. While Kai struggled in his mothers arms the doctor managed to get a good look at one eye and a glance at the other. All the while Kai was screaming and struggling which was very distressing for a parent. Jadie eventually has to hold his head still while the doctor had a look with the strange apparatus attached to her head. Eva though she looked very silly, and I would have to agree.
The outcome? Kaiden’s eyes are just fine. Woot, this in the only good news that we have had since we found out about the Cyst. With every other visit to the hospital with Kai resulting in bad news, I half expected the doctor to say “he will be blind by the time he is 3” or something equally scary. Thank goodness for that.
I am not sure how this works, but she also said that he does not need glasses. I don’t understand how they can tell as it takes an optician ages to figure it out while asking me “bettor or worse” and trying to fake me out by using the same lenses over and over again.
The doctor assured us that there is currently no ongoing pleasure on the optic nerve that was evident on the scan. This is most likely due to the hydrocephalus occurring before birth so this also relieves our fears of ongoing damage.
Next appointment is in two days for them to take bloods…lots of bloods…

Kaiden and the chicken pox

2010-06-14T15:35:00.001-07:00

With Kaiden’s condition when his sister Eva had the pox last week she was put on medication to accelerate the progress of the virus. The result was that it was only 4 days from spots to crusting and 6 days to no spots.
There was some debate about what should be done for Kai: You can’t have brain surgery when you have chicken pocks as there is a far greater risk of infection.
There were two options:

Temporary immunisation so he does not get it, but this only works if he has not yet been exposed
Same as Eva and speed up the process

Our GP Dr Pexton from Williamwood Medical Practice is the only GP we trust. Not only did he decide that something had to be done, but he also called the Nero-surgeon and Yorkhill Children's Hospital for advice. If you are not familiar with the UK GP system, they deal with all of the non emergency minor ailments and are usually your first call if you want to see a specialist.
The advice was to wait and see, and if he does get it to speed up the process so he has it for as short a time a possible. Dr Pexton said to call right away if he has symptoms.
Well…he got it!

Figure: Poor little man suffering from Chicken Pocks
He presented with spots on Thursday night and we called Friday morning for the prescription. Unfortunately Dr Pexton was off, sick I think :) and the receptionist said that she would put it through to one of the doctors as soon as possible.
Well, Jadie called after lunch to see when I could go an pick up the prescription and they had not even put it through! Jadie was livid and insisted that they put it through immediately. Which the receptionist ignored and was very rude and dismissive of Jadies concern.
I will never understand why a dumb assed receptionist thinks she has more knowledge of the circumstances and clinical risk of particular circumstances than a doctor or those intimately involved in the situation.
In fact Jadie called back just after 2pm and with the note still not sent through I called to say I was just coming down for the prescription and just sat there until I got it.
The receptionist even made me wait 20 minutes once I got there before even telling the doctor that I was waiting…
It sucks, but we has to tell Yorkhill that Kaiden has chicken pocks and they have moved the appointment with the opthamologist back to the 21st June.

Kaiden and the endocrinologist

2010-06-08T14:18:00.000-07:00

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…

Kaiden and the stressed parents

2010-06-02T14:16:00.000-07:00

Yesterday I contacted Southbank and they said that they will try to get a hold of the Neurosurgeon this week! Tried our GP as well and he can’t do anything.
The Neurosurgeon's office called today to say the we will have our first consultation on 29th June. That’s 4 weeks from now and 5 weeks from our original diagnosis.
Even with the longest non-emergency case above from the US it was 4-6 weeks for surgery, and I do not think they will be doing it within a week of our first consultation. There is a consulting date on the 8th June but it is full. I don’t really understand why they can’t see a few people every day instead of making everyone wait weeks but their you go…
To be honest I don’t really give a monkeys about the consult as we have already been told he needs an operation. That's what I want a date for!
I have called the referring consultant and I am awaiting a call back. I am thinking of trying to get a second opinion from Great Ormond St. children's hospital, and I have emailed the director of the Children's Hospital Boston to see that the costs are there. However I have a feeling that the US will be “sell your house to pay for it” costs and Great Ormond St will have a huge waiting list.
Well, lets see. Spoke to the consultant and she has assured me that if she thought that Kai needed to be seen sooner then she would champion the cause. But she does not… It may be the correct answer, but it is not one that we want to hear.
Although from a clinical risk standpoint Kaiden may be less urgent than another case, my concern is for unnecessary damage that may occur in this waiting time. In a child as young as Kaiden where even a month is a significant portion of the life he has lead so far a lot can happen in a month.
Are they just going to wait until it is acute and we end up in the emergency room of the Southern?

Kaiden and the letters from America

2010-05-31T14:14:00.000-07:00

As we had still not heard back from the Neurosurgeon (yes I know it is a holiday weekend), I went looking for someone to ask questions of. On the Children's Hospital Boston website I was reading about hydrocephalus and was surprised to find a list of emails at the end with a “If you have any questions, please contact us for more information”.
So I emailed them all, and to my surprise I received three replies the same day including from the Chief of Neurosurgery.

Based on the pictures on the blog site, I suspect that your son has a suprasellar arachnoid cyst. We usually treat these here with endoscopic surgery - although I must tell you that I would need to see a complete set of the images in order to be certain of the diagnosis and treatment. This is not a five-alarm emergency, but here in the states your child would have been seen the next day. If Kaiden is alert and awake, not vomiting, not holding his head or displaying changes in his ordinary demeanor, the exam could wait for a week or so. I think that you are seeing the NHS in action here - and who knows, maybe there is no emergency. But if it were my child, I would want an exam immediately. Good luck.
R. Michael Scott, M.D. Neurosurgeon-in-Chief, The Children's Hospital, Boston

So, this is particularly pertinent as over the last month Kaiden has gone from a contented settled baby to being very fraught and anxious. He is also holding his head two or three times per day. I will be phoning the Southbank clinic tomorrow to make sure that all of this went into the referral.

I think this should be seen and treated sooner. I would do it within a week of first making this diagnosis, as long as the child is not sick. Otherwise, it becomes urgent. I assume he is clinically well at present.
This should be able to be treated with a minimally invasive endscopic procedure: opening the cyst and establishing normal CSF circulation. An endoscopic third ventriculostomy may be necessary along with the cyst fenestration.
I hope this helps.
Benjamin C. Warf MD, Associate Professor of Surgery, Harvard Medical School, Department of Neurosurgery, Children's Hospital Boston

If you met Kaiden today you would not be able to tell him apart from any other 15 month old, except that he is not walking.

It is difficult to tell from the 2 images that you provided, but he clearly has a cyst with obstructive hydrocephalus. If this is a suprasellar arachnoid cyst - which is what I suspect based on the images - we would normally get formal visual field testing, endocrine evaluation (the location of the cyst can affect hormonal function in some cases) and try treatment with endoscopic fenestration. It is not usually an emergency, but we would often perform the workup I noted, followed by surgery within 4-6 weeks, barring the symptoms of severe increased intracranial pressure or sudden visual loss. Fortunately, children often fare quite well following treatment and I would expect that your child would have an excellent prognosis.
I hope that this helps and I wish you good luck with your child. If you wish to be seen at Children's Hospital Boston, we can help to put you in contact with our international office.
Edward R. Smith M.D. Director, Pediatric Cerebrovascular Surgery Department of Neurosurgery Children's Hospital Boston

This reply put me at ease for two reasons. First is the timescales, but I would like to actually be seen by a Neurosurgeon sooner. Second is the expected outcome…
I am very grateful to the guys from Children's Hospital Boston that replied to my emails. But I am also angry that I can't get to speak to a Neurosurgeon here in the UK for a month and yet not just one but four American Neurosurgeons take the time to email me. (sigh) This is the system we have and deal with it we will.
We will see what they say tomorrow…

Kaiden and the long wait

2010-05-28T14:12:00.000-07:00

We were getting more worried by the hour and with four weeks to wait our stress level were through the roof. The Southbank clinic had asked us to have a think about things that were atypical for Kaiden. We have made a list and imparted it to them, but some of these things could be just normal baby developmental changes and it is so difficult to tell which is which.

Not wanting to be left alone
Drinking and eating a lot more
Eyes not following you or looking through you
Crying a lot more than usual
Holding his head
No more teeth through since he was 9 months old (although there is one just now)
Falling backwards when you are holding him
Little or no speech development

These should all be on the referral with a copy sent to us, but with the holiday weekend I do not think we will see it till Tuesday at the earliest.

Kaiden and the scan

2010-05-26T14:10:00.000-07:00

The scan went fantastically, with Kaiden sleeping in the MRI machine for all but 5 minutes at the end where he waited patiently for it to finish. We were not expecting anything to be wrong as this was just a precautionary scan to make sure that nothing in his head was affecting his gross motor skills.
After the scan we were told to expect a call towards the end of the week…

Tuesday 25th May, 12pm

The very next day we got a call from Southbank who said that they has found an Arachnoid Cyst and could we come in the next day to see a Consultant and that Kai would need an operation.

Wednesday 26th May, 12:30pm

We went into the Southbank clinic and spoke to the paediatric consultant who assured us that it was operable but that it was taking up considerable space in Kai’s head. Cerebrospinal fluid is building up as a cyst is blocking the channels it uses to drain. Thankfully they told us that prospects were good and that Kai would expect to make a full recovery before showing us the MRI pictures.
The two images I have were taken on my mobile phone as we had to go to one of the back offices to see them. They did not have another computer!

Figure: Normal brain MRI cross section.
This normal scan shows the spaces in the middle of the brain that contain and produce the Cerebrospinal fluid.

Figure: Normal Cerebrospinal Flow
This fluid is needed by the brain but is drained in the middle down the spinal column.

Figure: Kai’s cyst blocking the four channels.
I do not think that I need to explain the difference between the healthy picture and Kai’s picture. However you can see in this first picture the faint outline of the cyst in the middle that is blocking the four channels from draining. After seeing the scans a Neurosurgeon has decided that he is not acute, but needs an operation to unblock the flow.

Figure: OMFG!

You can see in the second picture the effect of the build up of fluid. If I was not horrified by the first picture I was seriously horrified by this one. This is not only worse than our worst fears, it is worse than our worst nightmares!

What next?

Kai is not presenting the symptoms of vomiting or listlessness that would show an immediate problem and as such we will get an appointment to see the Paediatric Neurosurgeon at the Southern General hospital in about 4 weeks. This timescale is based on the Neurosurgeon seeing the scans. After that Kai will need an operation to release the pressure and either remove the cyst completely or put in a permanent shunt (tube from brain to stomach) to bypass the blockage.
We have updated his notes for the referral with additional recent information on top of the scan that the consultant things will help improve the timescales, but that is just a guess.
All we can do now is wait and see, and be watchful for tell tail signs of listlessness, eye problems and vomiting that would signify a worsening of his condition.

Kaiden and the rather large head

2010-05-13T14:02:00.000-07:00

Some of you may remember when my son Kaiden was born I posted pictures of him and his sister. Kaiden is now 15 months old and is progressing perfectly in every area except that we had been worried that he was not walking yet. We were only really concerned because his sister was walking at 8 months.
Jadie and I were concerned over that and that he had a rather large head (noggin) so we talked to various GP’s and our health visitor who immediately dismissed our concerns every time. That was until about two months ago when we happened to get a GP whose daughter had Hyper Mobility and she recognised the symptoms immediately.
We were referred to the Southbank clinic who were lovely and the paediatrician confirmed that he had Hyper Mobility after testing all of his faculties. This just means that his joints are overly mobile and would need a little physiotherapy to help him out.
At the end the paediatrician remarked offhand that he has a rather large head and wanted to measure it. Sure enough he was a good margin above the highest percentile mark for his height and weight. The paediatrician showed the measurements to a paediatric consultant who, as a precautionary measure, referred us for an MRI at Yorkhill Children's hospital.
Now, Yorkhill has always been fantastic to us, and this was no exception. You know we have NEVER had a correct diagnosis for the kids (with the exception of the above) from a GP and indeed twice have been proscribed incorrect medication that made the kids sicker!
We now always go strait to Yorkhill to save them having to fix GP mistakes as well.