Tuesday 21 August 2012

Blog 25 - Two more Ops for Nick - 2 years 4 months - VP Shunt Revision

Admission to Hospital - June 2006, and subsequently 2 surgeries

Well here we are again - back in hospital.


This story begins with Nick's routine eye examination with our ophthalmologist. We missed the actual appointment due to not receiving the appointment letter so were re-scheduled to a couple of months later, on the 26th of May. Upon examination of Nick's eyes Dr Forrest said that his optic nerves were swollen again and that he would contact the neurosurgeon. He told us to go home, don't worry and that someone would be in contact with us. Well as the story of our life goes, no one from the hospital rang us. So as we have learnt over the years we made our own appointment to see the neurosurgeon the next week as it had not been done on our behalf.

My husband Joe took Nick in to see the neurosurgeon. He had not been told about Nick and there was nothing written in his file to tell him what was found. So Joe explained what the ophthalmologist had told him. The neurosurgeon asked whether a CT scan had been arranged, which of course it hadn't. The neurosurgeon then said that he would organise it and we would see him after it was done.
Well for two weeks we waited for the appointment but did not receive one, so I rang the hospital and found out that Nick did have an appointment but it was in 4 weeks time, on the 29th of June. We were a little concerned about how far away the scan was but we knew our hospital system and how hard it is to get a CT scan appointment. We also had faith in our doctors that they had Nick's best interests at heart.
I must make the comment here that during the weeks that we waited for the CT scan we noticed Nick's behaviour in particular change. He changed from his placid self to a boy who threw a lot of temper tantrums and who got upset easily and who had mood swings. His speech also deteriorated. We went from understanding about 90% to understanding 10% of what he was saying. Nick's veins on his forehead also became much more visible and his little soft spot bulged and pulsated. These changes towards the end made us quite concerned.
We were also concerned because we know swollen optic nerves can cause blindness but we didn't know how long it takes for this to happen. The neurosurgeon put our worries at ease and said that it takes a long time for this to happen.

CT Scan on Thursday, 29th of June
Nick was admitted to hospital on Thursday the 29th of June, for the CT scan. While waiting I checked that the ophthalmologist was going to be there because another thing we have learnt over the years is that you cannot presume that things have been organised as you are told that they have been. The ophthalmologist registrar was in the CT scan room which was pleasing to see when Nick arrived and she looked at his eyes when he was under sedation before he had the scan. Nick was given gas to sedate him which worked really well and he woke up quite quickly afterwards.
The ophthalmologist registrar told us that Nick's optic nerves were still swollen. We then had to wait for the neurosurgeon to be in contact to let us know the outcome of the scan.

The Hardest Part of Hospital is the Waiting
I always find the hardest part of being in hospital is the waiting for the doctors to come and see you. This is because you never want to go too far incase you miss them but often they say they are coming but they don't arrive.
We waited for a couple of hours and then asked the nurse if she could find out when the neurosurgeon would be coming to see us as we knew that he had a clinic at the hospital at midday. We were told that the results were not in yet for the CT scan but that we would be notified when they were ready. As it was approaching midday when we knew the neurosurgeon would be there, we again asked the nurse what was happening. She rang the neuro's nurse and we were told that the results would not be in for hours but that the registrar had gone to look at the scans. We knew that the neurosurgeon leaves after his clinic and we didn't want to be forgotten about so we went and sat outside his door. The registrar saw us there and told us that he had gone to look at the scans and would see us in a minute to tell us what was going to happen. He then came out and said that he had to go but would be back in a little while to tell us the results! More waiting..... my husband Joe went and got us some lunch and brought it back and we sat and waited for the registrar to return. Which he did eventually.
The registrar told us that the CT scan looked fine so the next step was to insert a ICP probe into Nick's brain and put him in ICU for 2-3 days to measure the amount of pressure that was in his head. If there was no pressure in his head then the swollen optic nerves were something to do with his eyes. If he had ICP then surgery would most likely be the outcome.

Operation no. 4 - To Insert a ICP Probe on Friday, June 30th
The registrar told us to come into the hospital at 8:00 am the next morning and that he would operate on Nick at lunchtime. We arrived on time but Nick was not operated on until 5:30 pm. We ended up being admitted to the ward while we waited.
Nick went into surgery at 5:30 pm and we waited, not knowing how long the operation was going to take (we had forgotten to ask). After a couple of hours we went to ICU and asked whether Nick was there - he was just about to arrive. The ICU nurses called us when he was ready to be seen.
Nick was not too happy in ICU and had painkillers during the night and for the next morning. He had the usual ICU monitors attached to him plus the ICP probe which was attached to a monitor as well. Nick spent 2 nights in ICU, with me sleeping (more like dozing) in a recliner rocker beside his bed. Nick was supposed to have spent another day in ICU but he moved too far on the bed and the probe became detached from the monitor. When the nurse tried to make the monitor work again after she reattached the connections, it would not. The ICU rang the techs for the monitor but it still would not work. So on consultation with the neurosurgeon's registrar the probe was taken out and we were sent the ward.
What the ICP probe showed was that Nick was getting quite high pressure in his head (readings up into the 50s - we were told that normal was below 20) when he was sleeping. He also showed high pressure when he was upset (which we were told was quite expected) and a couple of times that I saw, was when he stood up.
We then played our waiting game again to find out what was going to happen next.


Operation no. 5 - Shunt Revision on Thursday, July 6th
We went back to the ward and waited. The next day one of the neuro's registrars came to see us and told us that Nick would be having another CT scan so we fasted him. A couple of hours later the other neuro registrar came and said that it would not be able to be done that day so Nick could eat and that no other CT scan would be done....
The next day which was 2 days after leaving ICU the neurosurgeon came. As it was the holidays he was extremely busy which I can completely understand, but to be honest it was a very long two days, waiting, wondering,... fasting, not fasting...... then wondering when the neuro was going to show up. Nick too wasn't the best of patients exhibiting a lot of temper tantrums and yelling at me which was hard to deal with in front of other people.
But finally on the Tuesday the neurosurgeon came. He told us that yes Nick had high pressure so there was a problem. He decided that even though Nick's CT scan had shown that the shunt was working, he thought that it would be a good idea to go in and take a look (particularly based on previous experience...) He then had to find a time to operate on Nick as he was really busy. We then had to wait once again for a time....
The next day, being Wednesday, the neuro's registrar came to see us and told us that Nick would be operated on Thursday morning. I was really happy to finally have something done.
We were then moved from the medical ward where we had been staying to the surgical ward.
Nick fasted from 6:30 am Thursday morning and went to Theatre about 1:30 pm. It is interesting to note that the hospital was having its 75th birthday and I was invited as a special guest as I had been through the hospital as a child with my Crouzons and now the kids are. But because of preparations for Nick's op and he not being able to eat, I was unable to stay very long which was a shame.
Nick was in theatre for two and a half hours. The neuro's registrar who performed the surgery found that the shunt, once again, was indeed blocked. The third ventricle apparently was too full of fluid. So a brand new shunt was put in (the time before just the catheter was replaced). Nick went back to the ward afterwards to recover.
We were told by the neurosurgeon that we would be able to go home on the following Monday. Saturday rolled around and Nick was so good that the neurosurgeon said we could go home which was wonderful.
A week later we took Nick to our family doctor to have the stitches taken out of his head. 



© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission.

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