My husband and I were finding life way too hard to deal with alone. The friends we thought were friends were nowhere to be seen whilst Nick and Melissa were in hospital.
We felt very much alone. The sore festered when we saw other babies/children inundated with visitors.
It was in this time of loneliness and extreme stress, that I suggested to my husband that we join a church.
He agreed.
The following day I walked into the school staffroom and asked the teachers, 'Who had a church that we could go to?'
One of the teachers responded that she did, and we made plans to visit her church.
Our friend wasn't going the next weekend so we planned to go the following weekend. In that time we had a visit from the Pastoral Care Pastor.
We had afternoon tea together and he sat and read with Melissa and Nick. Before he left he gave us some money. We were blown away by his caring, his kindness, his compassion and the monetary blessing.
We did not get to church until after Nick's next operation which is explained below, but the Pastoral Care Pastor came and visited us at the hospital. This meant so much to us.
Operation 4 for Nick - June 2005- Revision of Blocked VP Shunt
We were told before leaving hospital in February that Nick's shunt could stop working at anytime. We were also told that there are classic symptoms to look for (as outlined on my Hydrocephalus page) or there may be nothing really wrong but we'll know that something is not quite right.
Our Concerns:
About 6 weeks after Nick had his shunt put in we noticed that Nick's head was starting to change shape again. To begin with Joe and I thought this to ourselves but did not mention it to each other. Then one day I said something to Joe and he said that he had been thinking the same thing!
Before Nick had his shunt put in he had a very bulgy looking forehead, with bulging pulsating spots where the soft spots were. After Nick had his shunt put in this all disappeared. His forehead lost its bulginess and the soft spots became dents.
What we both noticed was that these dents were become bulgy again. We then noticed Nick's forehead become bulgy and higher. The skull bone infront of the scar was becoming higher then the skull bone behind the scar. And in the last couple weeks before his operation we noticed that more holes were appearing in his forehead. We also thought that Nick's eyes were becoming more bulgy.
The more we observed him, the more we became worried. But we weren't too worried as Nick was happy and showed no other signs of intra-cranial pressure e.g. vomiting, headaches, delayed development etc. Before he had his shunt put in, Nick stopped talking and had headaches.
CT Scan and Doctors:
We made an appointment to see the neurosurgeon to discuss our concerns. He looked at Nick but wasn't too concerned. He booked Nick in for a CT scan to see what was happening with the ventricles in the middle of the brain. He told us that if the ventricles are enlarged then the fluid is not draining away and thus the shunt is not working properly.
We saw the plastic surgeon the next day. He agreed with us, that yes there was a problem. He believed that the changed head shape was probably due to the shunt not working properly. The plastic surgeon measured Nick's head and it was the same size as Melissa's who is 4 years old. On his baby chart his head size had gone from the 50th percentile to the 98th percentile. We also told him that we thought Nick's eyes were becoming more bulgy and could that be the hydrocephalus or just the Crouzons. He didn't think that the Crouzons would make his eyes more bulgy that quickly. The plastic surgeon then sent us to see the opthamologist for his opinion.
We were booked in to see the opthamologist on the following Monday but he put his back out so we had to wait a week. On the Friday Joe arrived at the hospital early with Nick. The opthamologist examined Nick's optic nerves and said that the pressure was higher then when he examined him last (a month after he had his shunt put in), so in his opinion there was a problem with the shunt. This confirmed our instincts.
We then had to wait for the hospital to organise what they were going to do.
Waiting and Hospitalisation:
We thought that we would have heard straight away from the hospital but we didn't. Three days went by and we heard nothing. Joe rang the hospital and talked to the sister who we liaise with but she knew nothing and said that nothing was written in his chart.
We started to get more worried as that morning we could not wake Nick. He normally would be awake by 6 am. At 7:30 am he had not woken so we opened his door, called his name, rubbed his head and tried to rouse him but there was no response. This had never happened before. We were going to ring the ambulance but Joe decided first to try and sit him up. This worked and Nick woke up. This scared us! If we did not get answers very soon we made the decision that we would go to the hospital's Emergency Room and wait there until we did get some answers.
But the next day one of the doctors rang to say that Nick would be coming into hospital and he was organising everything. The doctor said that he would ring us back. That was 12:30. We waited the rest of day in anticipation of the call. At 8:00 pm the phone rang. Nick had to go into hospital the next day (Wednesday) for blood tests. He would then have a CT scan on Thursday and depending on the results of that, be operated on Thursday night or Friday.
We were concerned about Nick's health as he was on antibiotics for a throat infection. His blood results were fine and the doctors who examined him said his chest was clear and that he didn't have a temperature, so he was fine to go ahead with the CT scan.
Nick went into hospital the next day for blood tests. Joe took him and I went to work. At 3 pm Joe rang me at work and said to come to the hospital as Nick was staying in overnight. I rushed home, packed my bags and got a lift from one of my lovely fellow colleagues to the hospital. Joe was out the front of the hospital when I got there and said that we could go home for the night but we had to be back the next morning for the CT scan. I was slightly annoyed about being stressed out but was happy not to have to sleep in the hospital for the night.
We were at the hospital at 8 am the next morning. Joe dropped Nick and I off at the hospital. He took Melissa back home to kindergarten as we didn't want her hanging around the hospital all day. It would have been very boring for her and stressful for us to try and entertain her as well as worrying about Nick. We did not have a babysitter.
CT Scan No.2 and the Diagnosis:
Nick was sedated for the CT scan. He fought the medication as hard as he could. Nick had the CT scan at 9:15 am. We then had to wait for the neurosurgeon to come and see us. At 1:30 pm he came. The neurosurgeon said that the CT scan was the same as the one he had a month before and that in his opinion it was working properly. (In the moment before he spoke his next sentence, I was thinking that he had better operate on Nick.....) He then said that because he had pressure on his optic nerves that they were going to put in a different type of valve in the shunt. In the shunt the value fills up with fluid and then drains it away. It is triggered by the pressure in the brain.
The neurosurgeon explained that Nick had a medium pressure valve and that they would replace it with a low pressure valve. The analogy he gave was of turning on the tap more. This pressure would drain fluid away quicker. We were satisfied with that. He then said again that he didn't think the shape of Nick's head was related to the hydrocephalus.
When I questioned him on when he would be operating on Nick, the neurosurgeon replied that he was unsure - possibly that night or possibly the next day. He said that Nick could have something light to eat and something to drink (which he had had already).
Joe went home at 1:30 pm to collect Melissa from kindergarten and we decided that he would stay home until I rang.
Waiting for the Operation:
Nick had a sleep and woke up about 3 pm. I asked the nurses if he could have something to drink but they said no as he may be having surgery that evening. I asked them if they knew what time his surgery was but they did not know. At 4 pm I asked the nurses again but they did not know. Every hour I asked with the same response.
At about 6 pm I was starting to get impatient and talked to the nurse manager to see if he could find out what was happening. My main concern was for Nick. He was getting lethargic and hadn't had much to eat or drink in 24 hours - I wanted to feed him if the operation was not on. In 24 hours Nick had only had 150ml of milk and 3/4 of a sandwich. The nurse was very concerned about him becoming dehydrated, so an IV was put in and Nick was given saline. We still didn't know what was going to happen.
At 7 pm the neurosurgeon's registrar came to see us. He was very nice and listened to everything that we told him. He told us that the CT scan is just one indicator but you have to look at everything. That is what we thought as parents.
He said that Nick was probably going to be operated on that night depending on what happened with another child who also needed a shunt revision. The other child was sicker then Nick so was the priority. Nick was not considered an emergency so the registrar said that if it got to 10 pm he would not operate - he would leave it until the next day or Monday. The doctor admitted that he was tired so I told him that I would prefer not to have Nick operated on very late (I was so proud of myself for asserting myself. I thought that we had waited weeks to get this done so another day would not hurt. A fresh doctor has to be a better doctor). I guess that the doctor was being very honest to admit to being tired but it actually added to our stress.
The Operation:
At 9 pm Nick was called. (I had been hoping that 10 pm would come and he would not have been called). The operation took approximately 1 3/4 hours. My husband and I fell asleep in the parent waiting room. I think we were both emotionally, mentally and physically tired from the weeks of worry and trying to get something done to help our son because we were pretty positive that there was a problem. The neurosurgeon came in to the waiting room and woke us up at 10:45 pm and explained that the tube going into Nick's brain was blocked. I guess this is called the ventricular catheter. The pressure valve did not need to be changed.
We were so relieved to know that our instincts were right and that we had not taken the neurosurgeon's initial diagnosis that everything was working. We knew as parents, that even though Nick did not have the classic symptoms, that were was a problem. We just wished that it had not taken 5 weeks to be fixed.
I was told by a friend when Melissa was young, and we were trying to get doctor miscommunications sorted out and operations scheduled and re-scheduled due to hospital cancellations, that as parents it is our job to stick up for our children because no one else will. It is our job to persevere and get doctors to listen to us. Joe and I have found this hard as we are not overly assertive people but we are getting better.
We have found that every time we have taken one of our children to see the plastic surgeon with concerns we have been right - there has been a problem. This has given us confidence in our judgements as parents.
Post-Operative:
We did not see Nick's neurosurgeon after the operation. We did not see the neurosurgeon's registrar who operated on Nick either for the rest of the time Nick was in hospital. This annoyed us.
Nick had the operation Thursday night. On Friday he was fairly lethargic. Joe noticed that Nick was developing an egg shape around his wound so we brought this up with the ward doctor. He contacted the neurosurgeon who sent us for an ultrasound. The ultrasound showed that it was swelling and that there was no leakage of CSF (cerebral spinal fluid). We were relieved by that. We were told to keep an eye on it and if it got bigger then they would do another CT scan. By Friday evening Nick was getting back to his normal self. We were told that we could go home the next day if we wanted to.
Saturday when he woke up Nick vomited so I said that I didn't want to go home until he was well. Nick vomited in February after having his shunt inserted so we were not surprised by this. The swelling didn't seem to be getting any bigger so we were happy with that. Nick was unwell for the most of the day but by the evening was back to himself.
On Sunday I told the nurses that I did not want to take Nick home without him being seen by the neurosurgeon or the registrar. I didn't think that it was right that no one had been to see him. The other child who had the shunt revision had gone home Saturday. A different registrar to the one who had operated on him, came and saw him, so we were more happier then we were, and we took him home. It still would have been nice to see the neurosurgeon or the registrar who operated on him.
Nick was in hospital for 5 days.
Home:
On Sunday afternoon Nick pulled his dressing off his head. We were shocked to see a row of about 12 tidy staples in his head. We thought that his cut would have been stitched like it was last time. On the Monday we rang the hospital to find out whether we could take him to our local doctor to have them removed or whether he would have to go back to the hospital. We were told that our local doctor could take them out.
Post-Shunt Revision:
Nick's staples came out fine but he wasn't too happy about having it done. The wound healed well. It was a long time before hair started to grow over his shunt so it was very obvious to people that he had something sticking out through his skin. We have been asked many questions about his 'lump' so we have found this an opportunity to educate people on hydrocephalus and vp shunts.
© 2012 by Jenny Woolsey
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