Well here we are again - back in hospital.
This story begins about a week and a half after Nick's discharge from hospital after having his VP Shunt fully replaced.
Nick was doing well but then we had two mornings where he would vomit for an hour or so and then was fine for the rest of the day. On the second day of this I rang the hospital's Emergency Room for advice and they said to either bring him to the hospital or take him to our local doctor. We took him to our local doctor who saw him straight away. Our doctor could not find anything wrong with Nick e.g. no viruses etc. so he told us that if it happened again then to take Nick to the hospital.
The next day Nick woke up extremely irritable and would not eat his breakfast. He was not vomiting so I got ready for work. Just before it was time for me to leave for work Joe decided to test Nick's shunt to make sure that it was working. It was not so I rang work and said I was not coming in, and we headed for the hospital. On the way Nick vomited again.
We spent 6 hours in Emergency and Nick underwent a thorough examination and many tests. All tests came up with that there was nothing physically wrong with him. He had a shunt series x-ray done as well, which showed that his shunt was connected and looked good.
There was an opening at the x-ray department for a CT scan so we took Nick there but he wouldn't have a bar of lying down for the scan.
The ophthalmologist also looked in Nick's eyes and saw that his optic nerves were still swollen but this was to be expected as they need at least a month to change.
So Nick was admitted to the ward.
In the Ward
The next day Nick was fasted and sedated for a CT scan. The scan showed that the shunt was working properly.
We then waited for the neurosurgeon to come and tell us what he wanted to do. The registrar told us that he would be operating to check the shunt.
On the Saturday morning the plastics registrar came to see us and the neurosurgeon came to see us. The neurosurgeon told us that he had looked at the CT scans and he was pretty sure that the shunt was working. Based on this he would not be operating to check the shunt.
So the next step he told us was for Nick to have the back of his head expanded. His conclusion was that Nick's skull was too small for his head. It needed making bigger.
We were given the date, Tuesday the 8th of August, 2006 and we went home to wait the two weeks.
Admission to Hospital - 7 August, 2006
Nick was admitted into hospital on Monday the 7th of August. We waited two hours in the ward. The neurosurgeon's registrar came to see us. He told us that there is currently a pneumonia and bronchitis outbreak and that the beds in ICU are full. There would not be a bed available for Nick for Tuesday, so his operation was cancelled.
We voiced our concerns about Nick and how worried we were about his vomiting, lethargy and irritability (he had vomited again on the Thursday before). The registrar told us that Nick was on the top of the waiting list and that his operation had been moved to two week's time - Tuesday the 22nd of August.
I went back to work the next day and felt really bummed out. It is always difficult when you are coming down the other side off a cancellation of a major operation. You get yourself all psyched up to cope and then you have to snap back into everyday life until it happens again.
Joe took Nick and Melissa to see the neurosurgeon on the following Thursday - Melissa had her annual review. She is fine which is really great. The neurosurgeon told Joe that nothing could be done for Nick until the epidemic had passed and ICU had beds. He did not know if the operation would go ahead on the 22nd or not. We just had to wait and see....
Nick has to sleep with his mattress at about a 30 degree angle to help stop the pressure from building in his head. Here is a photo of him at home.
Well we heard nothing about the 22nd of August and all enquiries to the hospital came back as nobody knew anything and he was not booked in for an operation on that date. We were disappointed.
We then kept on making enquiries and contacted the craniofacial clinic to try and find out what was happening. The head nurse knew nothing but said that she would be seeing the plastic surgeon and the neurosurgeon that afternoon at the clinic and would enquire for us.
We again heard nothing. Upon phoning the hospital back a few days later we were put through to Bookings as the head nurse was away and were told by the Booking Office that Nick had been booked in for his op on the 5th of September. We were happy and relieved to hear this.
But this was not the end of our dramas.
The week arrived and Nick started to cough on the Sunday. We didn't think too much of it. On the Monday he coughed all the way to the hospital and we gave him some ventolin. We started to get worried.
There were no beds in the ward available so we went to the clinic. The anaesthetist was not going to come and see us until late that afternoon but hearing that we were not in the ward and that we had concerns about Nick's health she came into the hospital to see us.
Upon examining Nick she said that he had asthma and could not be operated on. She got another anaesthetist to come and evaluate Nick and the same opinion was given. We were devastated but completely understood.
When we got home from the hospital we took Nick to see our local doctor who didn't understand why Nick was allowed to leave the hospital - he was really sick with Bronchialitis.
Over the next few hours Nick deteriorated quite severely and we took him back to the hospital to the Emergency Department where we spent 7 hours with him getting his asthma and breathing under control. Nick was so sick that all we cared about at that point was his life, not the operation.
But once he got better we then began to wonder about what was going to happen with a new operation date.
We were given no indication of a time and as per normal no one could tell us anything...
Nick and Melissa had appointments with the opthamologist which was good as we knew that if there was a problem then he would get things a moving.
Nick's optic nerves were still swollen (now since April) and the opthamologist voiced his concerns over what might be happening because of the length of time that they have been swollen.
Nick was booked in for an urgent VEP scan on his optic nerves. The opthamologist told us that if there was a problem then Nick would be classified as an Emergency and then could be operated on outside of the normal operating day and hours.
So we took Nick for the test and waited and waited and waited for the ophthalmologist to phone us with the results. Which he didn't do.
We rang the eye clinic at the hospital to find out if we could speak to the ophthalmologist but we were unable to. Nick had an old appointment booked in for a month's time and we were told by the nurse that we would have to wait until then to get the results. We were pretty annoyed by this.
We went to see our local doctor to see if he had received any news but he had not. He was unhappy too and said that he would investigate.
When we got home from the doctor's we rang the hospital to talk to the head nurse of the craniofacial clinic again but she was away. We were put through to Bookings again and were told that Nick was being booked in for Wednesday the 11th of October. This special time was being made for him - so we guessed by this that he was now classified as an Emergency.
My Faith in God
I really think that I would have fallen apart with these cancellations and ensuring problems if it hadn't been for my faith in God. We have been through cancellations many times before but these ones were still hard to deal with as Nick has been unwell and we know he really needs the operation. We know that swollen optic nerves can cause blindness and this is a real concern. What has kept me sane is that I know 100% that God has Nick in the palm of his head and he is looking over everything that is happening. Nick was not meant to have the operation on those days. When is the right time we do not know, but I know that God knows.
Surgery Finally Performed on Wednesday, 11th of October, 2006
Soon after we were contacted by our local doctor and then by the Plastic Surgeons registrar with the news that Nick needed to go on a diuretic to help ease the pressure on his optic nerves. We had to give him a third of a tablet of the diuretic which we ended up crushing and putting into juice each day until the operation.
Operation 7 for Nick - Posterior Cranial Vault Expansion
We had to go to the hospital on the Tuesday for his blood work and to see the doctors. We then found out that yes he was on the Emergency Surgery List. We stayed in over night. Wednesday Nick fasted from 7:00 am. His surgery was scheduled for 1:30 pm. About 11am Nick started to become extremely upset but ended up falling asleep which was a blessing. At 1:15pm he was called. We took him to the theatre doors and I donned the cap and gown. Nick saw the anaesthetist and began to cry which pulled at my heart strings. I took him into the room and he was put to sleep. It was 6 and a half hours later when we saw him again.
We knew the op would take about 4 hours if everything went smoothly so we went for a walk and had some lunch. A dear friend from church came with us which was wonderful.
We went back to wait in the parent lounge after about 3 hours. The plastic surgeon came out at quarter to 6 to say that everything had run smoothly with no complications. Nick had needed a blood transfusion but we had suspected that he would have. The doctor told us that there wasn't enough bone so Nick may need to have some holes filled in later on if the bone does not re-grow (the skull bone will re-grow until the age of 4 years).
We got to see Nick in PICU at 7:20 pm. When we walked in he was sitting up in bed! We were totally astonished by this.
Nick also had dissolvable stitches under his ear-to-ear wound and on top of it as well - over 100. We had not seen stitches on the top before either. But the neurosurgeon said to us that the skin was stretched tight so we are guessing that they were to make sure that it was held closed (it is interesting to note that his vp shunt scar is now well above where his shunt is because of the stretching of the skin).
That morning because Nick was doing so well, he was sent back to the ward.
He was on morphene for 6 days with a bolus if need be.
Nick's eyes became swollen on Thursday and re-opened back to normal on Sunday which was very quick for him.
On the Wednesday he had a couple of episodes where the pain was really great and he went crazy. I soon learnt the signs of irritability so I could get a nurse before the pain got too significant.
He pulled out his IV in one of these episodes but thankfully there was a spare one from his surgery which was still working in his foot.
Nick was well enough to go home the following Tuesday. He was really wobbly on his feet from not being out of bed for a week and it took a couple of days for him to get his confidence back.
The transformation in Nick after a couple of days of being home was amazing. Our irritable moody child who we couldn't understand, was gone. The boy in his place is happy. He sings, dances, laughs, squeals, runs and his speech is becoming clear again. We are so indebted to our wonderful surgeons for bringing our boy back. And I thank God for his infinite love and for looking over everything that has happened.
Nick's head was a bit of a strange shape but we knew that the aim of this operation was not purely head shape. It was primarily to get more room for his brain to grow. If he got a good head shape as well then that was a bonus. The doctors gave Nick an inch of space which hopefully would be enough to see him through and so he wouldn't need this surgery again. And hair covers a lot of things (I know that from myself!)
© 2012 by Jenny Woolsey
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