This story begins with Nick bumping his head on a plastic dog. Nothing significant we thought. He did not cry, only uttered an 'Ow'. A little while later we noticed a bruise and then an egg form on his forehead. We watched this carefully and noticed that the egg began to disappear and it became squishy. We then noticed that the fluid which was squishy began to fill half of Nick's forehead. This raised alarm bells in our minds. Even though Nick appeared to be fine we knew from the previous time that he does not display the classic symptoms of VP shunt blockage so we contacted the neurosurgeon to have him looked at.
Thursday:
The neurosurgeon saw him a few days later and admitted Nick into hospital immediately for a CT scan. He was not happy with the fluid and the fact that the VP shunt valve was very slow to fill and empty. Joe rang me at work and said what was happening. Joe had to leave the hospital to come and get me from work and pick Melissa up from Kindergarten. Nick wasn't allowed to leave the hospital as the opthamologist wanted to look at his optic nerves to check the pressure on them. So Joe unwillingly left him and came to get us. When we got home I hurriedly packed a bag to take to the hospital so I could stay with Nick. I know that I have done this packing thing quite a few times as I went into auto pilot and did it really quickly.
Nick apparently wasn't too cooperative for the opthamologist but from what he could see he didn't think Nick had pressure on his optic nerves. The opthamologist would look again when Nick was sedated for the CT scan.
Friday:
Nick stayed in overnight and had to fast from 4am. He was booked in to have a CT scan had 10:30am the next morning. The next morning he went to have the CT scan but we were told that the computer that runs the CT scan was not working so the scan could not be done. No time was given for when it would occur.
Nick was allowed to drink some water and apple juice but nothing else for the rest of the day. At 5pm he was taken back for the scan. The anaesthetist came and sedated Nick. The opthamologist came and had another look at Nick's optic nerves. He said that Nick's optic nerves look different to 'normal' optic nerves but he was fairly sure that there was no pressure. That was good news. We then had to wait until the next day to get the results of the CT scan from the neurosurgeon.
Saturday:
We waited until 2pm the next day for the neurosurgeon's registrars to come and see us. The neurosurgeon had gone on holidays. We were told that because of Nick's previous blockage that he would be operated on the next day. I rang my mother from the hospital to arrange for her to babysit Melissa for the day.
An hour or so later the doctor rang the ward to talk to us. We thought it was to give us the time for the surgery. My husband went to talk to the doctor. I wondered why he was taking so long. When Joe came back to me he said that the operation was cancelled and that we were to go home. The reasons for this were that the CT scan showed that the ventricles were smaller then the last scan and the fluid which was on the scan did not seem to be connected to the cerebrospinal fluid and was most likely just swelling. The doctor was not 100% certain what it was. He also said that the valve was not emptying quickly most likely because the brain is pressing on it.
Another Emotional Roller Coaster:
We were happy that Nick did not need another surgery but it was another emotional roller coaster. You go from being rung at work to say he was being admitted and the adrenalin kicks in. You have in your mind that your child is most likely going to have more surgery and you deal with the emotions that go with that. Then you wait...wait...wait....for tests and scans and then the results. This part can be torture in itself. Then to be told that there will be definitely be surgery so you start planning the next day and the things that need to be organised plus the adrenalin kicks in again. Then to be told to go home, change of plans, you experience more emotions particularly when you haven't got any specific reasons for the fluid being there. But you try really hard to trust the judgements of the doctors. Though this time was not as bad as when Nick was to have his frontal orbital advancement and he was all ready for surgery with his IV in and then it was taken out and he was sent home as there were no spare beds in PICU.
Follow Up:
Nick went for his follow up with the neurosurgeon two and
a half weeks after we came home. We were quite concerned about the decision that
had been made to not operate, but over the ensuring two weeks we noticed that
the swelling subsided, so this eased our concerns.The neurosurgeon looked Nick's CT scans over and agreed with the decision that was made. He would not have operated either. This was good to hear. He said that Nick's ventricles were small which meant that the shunt was working well. He told us that the reason why the swelling took up so much of Nick's forehead was most likely due to the fact that the skin on Nick's forehead has not adhered to the skull bone (due to his previous surgery in November 2004) so it was able to move wherever it wished. Nick's skull bone seems to be fine and the brain is pressing on the shunt valve but while the shunt is working nothing will done about this. Whether this happens again, time will tell.
© 2012 by Jenny Woolsey
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