Another Sunday and another walk in the woods. Eventually after weeks of learning Muttley the dog has realised that the woods don’t actually belong to him and he’s stopped barking at every dog we meet. In fairness he never actually got in a scrap with any of them but he did get up on a beautiful black lab once. The poor pedigreed dog was very shocked by the experience. Not as shocked as his owner though. She stood there holding him by the lead going “oh, oh, oh” in a startled English accent. Strangely enough we haven’t seen them since.
Another long week for our little household in Ballyseede. Not one involving our little Freddie being hospitalized thankfully but more developments in his case. Last week we went for a MRI in
. The MRI was ordered on foot of the video telemetry which had shown that his epilepsy is starting in the frontal lobe of his young brain. The idea of the MRI was to see where the focal point was and if it made Freddie a candidate for surgery. Now most parents would not wish their son to be suitable for brain surgery and its inherent risks but we feel if it can give our boy a quality of life he hasn’t had in recent years it’s a risk worth taking. He can’t go on taking a cocktail of medicines and spending days on end in hospital. We wouldn’t mind if the Anti-Epileptic Drugs worked but mostly they tend to make him dopey whilst giving him little protection. The many trips to hospital and the fact we’re living here in Cork University Hospital Tralee is testament to their failure so far. So we headed down to CUH on the Wednesday of last week but not before Freddie had spent the Tuesday night in Tralee hospital. He’d gone in under the usual circumstances and Wednesday lunchtime I drove over and collected them. After a stop off at home for a change of clothes and a bite to eat we headed to CUH. The welcome back from the staff was nice but again we wish we weren’t so well known on the children’s wards of the southwest….
The next morning we were up early and prepped for the MRI. Freddie wasn’t allowed eat which is a torture for the little man. The ward was busy with kids coming and going for different day procedures. At about ten it was decided to sedate Fred as expecting an eight year old kid to lie still in a MRI machine for twenty minutes is a bit too much. Now Fred has a history of being difficult to sedate possibly because he’s had so many sedatives in his time. They went with Chloryl Hydroxide which had him asleep in about ten minutes. However there was a delay in getting the trolley down to bring him up and by the time they arrived he was waking a bit. The medical staff was surprised. Lisa and I weren’t. We were angry that the chance had been missed but decided to give it a try anyway. By the time we got to the MRI unit Freddie was awake and cranky. The radiographer suggested one of us go in with him and see if we could keep him still. Freddie pushed his mother away and reached for my hand. Why he rejects his mother who does everything for him and is always there for him is beyond me. So I had to strip myself of all metals, wedding ring, belt, coins and go in with him. The room itself frightened the living daylights out of me. Dark and no more than ten by ten feet with this tunnel machine in the centre lit up with a green light, it was like a sci-fi torture chamber. Freddie was lifted onto the narrow slide and his head rested on a half helmet type structure. All the time I was talking to him telling him how wonderful we all thought he was. They closed the other half of the helmet over him and screwed two wedges against the side of his head. He looked so calm and accepting as they slid him into the tunnel it broke my heart. If it was me I’d be freaking out. The technician gave me ear muffs and put a set on Freddie. They then turned off the lights and shut the door. All communication from the outside was by the intercom. I reached out and put my hand into the machine and held Freddie’s fingers when the process began. The beeping and cranking was loud and disturbing. Every now and again the technician’s voice could be heard telling us we were doing well. All I could tell Freddie was how wonderful he was and how proud we all were of him, over and over again. He lay perfectly still, didn’t move once, not once! It seemed like the longest twenty minute of my life looking into that tunnel and watching my boy doing what was asked of him but not knowing why. Even now nearly two weeks later I can’t believe he did it without question. When it was all done they wheeled us back out to Lisa waiting in the patients room.
The radiographer followed me and said “We got some perfect images, really perfect, he did excellently.” He didn’t need to tell me that, I saw how excellent he was but I was delighted he got the photos we needed.
So this Friday we went for the appointment with Freddie’s neurologist to see what the MRI imaging produced. The previous ten days had been spent just waiting for this meeting, wishing it to come. As usual we had to wait about two hours before we got seen; a reminder to us that Freddie isn’t the only child with epilepsy. The neurologist’s registrar saw us first, updating the records. We spoke of the MRI and our hope of surgery. He looked on the computer behind him “Well the scan was all clear, nothing unusual” he said. Not the news we wanted and certainly not to be told to us in such a fashion. He quickly realised that he’d overstepped the mark and left the room. Lisa was crying I was raging. A few minutes later the neurologist came in and discussed the next steps. Another change in medicines, taking him off one completely and starting a new one, one more suitable for frontal lobe epilepsy. Let’s hope it works. More importantly she proposed a PET scan, which apparently is more likely to show up where the malformation in the frontal lobe is, the bit causing all the problems. If that is successful it may make Freddie a candidate for surgery. My friend Brian was right; it really is only the beginning of a long, long road. The PET scan can only be done at the Blackrock clinic in
and is dependent on finding an anaesthetist to come over from Crumlin Children’s hospital to put him under. They insist on this. On the way home Brian rang to see how we got on. He told me that the HSE spent over a million euros buying a PET scanner for CUH nearly two years ago. Its being lying idle ever since because they won’t hire the staff to run it. Dublin