Kaiden and the worrying moment

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 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 operation

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 scared sister

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

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 wonky eyes #2

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 Ophthalmologist

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…