Grand opening of Paddy's Playhut that was given to him by Make-A-Wish on 19 August 2006. Cutting the ribbon with him is the Member of Parliament that helped to raise his plight in Parliament and we swear helped him get his operation quicker. Her name is Judith Collins and we love her!!!
23 September 2005
Our beautiful little boy will be 8 years old next month. He is looking forward to taking his friends Pin bowling and getting Pizza and DVDs to watch back at our place.
Patrick's AVM was discovered kind of by accident. He had what they thought (though not at the actual time) a complex partial seizure at the beginning of the last school holidays. He just vomited and then stood motionless. I just knew that something was not right. We rushed him down to the local after hours docs. We saw this useless man who obviously thought I was over-reacting. Patrick couldn't speak and this man suggested that he was being a bit naughty!!!! Anyway, they kept him there for about 2 hours just to make sure. In total, Patrick was in this state for just under an hour. When it was time to go home, the doctor said that Patrick is probably developing a virus and he will be unwell tomorrow.
The next day he was his usual happy and VERY WELL BEHAVED self. I decided to follow this through. As a parent, you know when something is not right, right? Our own GP was shocked and told me that if it was a virus and he had responded in such a way, he should have been in hospital. Anyway, he wanted to refer Patrick to a Pediatrician. It was me that thought that it was all a bit of overkill at this time! I said I'll just wait and see if it happens again. To this the doctor said "I wouldn't." This was enough for me and I made an appointment straight away. Of course I had to wait 2 weeks.
The Pediatrician was great. He listened, spoke to Patrick, examined him and concluded that he had probably had a Complex Partial Seizure. My husband (Joe) and I were very shocked (in hindsight, that was the least of our problem - if only it could have been just that). We thought that the world had ended because our son might have epilepsy. He wanted Patrick to have an EEG (to check for epileptic activity) and thought that a CT Scan would be good in the respect that it would give us some peace of mind (oh ha ha)!
So we went along for the CT scan a couple of days later (the private health system is soooooo good - in New Zealand we have two systems: Private where you pay, but are generally covered my medical insurance although not everyone can afford it or wants it and the public system which is totally free but boy, you have to WAIT ). I had a funny feeling when the first thing the lady said after the CT was "When are you seeing your Pediatrician?" Still, I drove home very happy thinking thank goodness that's all over. By the time I got home (about an hour later because we stopped at Dunking Doughnuts) there was a message from the Pediatrician on the answer phone asking me to ring him on his mobile. My heart stopped and my mouth went very dry.
I rang him and he said that there was a large mass in Patrick's brain. He said that he truly sent us in to reassure me that nothing serious was wrong. We needed to have a MRI to make sure it wasn't a tumor. He did mention that it may be an AVM (what ever that is I thought). I managed to organise a MRI the very next day. Once again I arrived home to a message from the Doctor. I have learnt to be very scared of that flashing light on my phone. I rang him immediately and he told me that it looked most likely to be an AVM not a tumor. I needed to make an appointment with a neurosurgeon. I was thrilled!!! I rang Joe at work and told him that Patrick wasn't going to die! That was the first time I had ever heard my man cry (I have now heard it a lot).
We had to wait another 3 weeks to see the neurosurgeon... ARGH! Still, we were really upbeat as we knew it wasn't cancer. It can't be that bad, right?! We took my mum to the appointment just in case the neurosurgeon wanted to talk to us in private. We thought he would want to talk about the epilepsy. Looking back I cannot believe we were so naive! Anyway, he spoke to Patrick and then asked if there was anyone waiting outside that could look after Patrick. I looked at Joe and could see the shock on his face.
When I arrived back (in a nano-second) he said that what he was about to tell us would change all our lives forever...again I think my heart stopped. To tell the truth, I also felt guilty that I had told Joe that it wasn't life threatening. He spoke about AVMs and said that Patrick's was as large as they get. It was the likely cause of his seizure. He spoke about treatments but said that the size of the AVM meant that surgery would be the most successful, however (and this was the most shocking), because of the size of his AVM, he had a 15-20% chance of bleeding during surgery leading to stroke, brain-damage or death. He would like to remove his entire left temporal lobe. Wow. He told us that we had gone private as much as possible in New Zealand. They don't do Brain Surgery in the private system. "But don't worry," he said "Patrick's AVM is serious enough to put him pretty close to the top of the waiting list!" I can assure you that that certainly is not a comfort!!!
There has been a lot of tears (including our GPs, he was shocked and prescribed me some sleeping pills immediately), a lot of heated discussion, a lot of internet research. We thought that it was almost disrespectful not to tell Patrick as everytime the phone rang or someone came over, we would shut the lounge door or begin whispering. Patrick saw me getting hugged a lot! Joe (my husband) wasn't himself. We decided to tell him a watered down version (being that he is only 7). We told him that some of the veins in his "head" have gotten a little tangled up and he might need an operation to sort them out. His face dropped a little but then he got pretty excited about the thought of going to the Starship Hospital (there is only 2 Pediatric Hospitals in New Zealand) where they have a playground on every level and a 'play specialist'. Bless him!!!!!
Then I found this AVM support website. Yahoo! Real people that know what it's like. I know some people look at Patrick and think "Well he looks fine". This includes Joe. He especially is having a hard time coming to terms with it all. He says "why send a healthy boy in for surgery when he might not come out healthy". He just doesn't get the picture that we are potentially living with a time bomb!!!
A few weeks have passed and we now finally have an appointment time for his angiogram. Our neurosurgeon wants to check how many veins are connected to it. He says if there is too many, surgery will not be an option. I will be allowed to stay with him the whole time (well, at least until he goes though the doors for the actual angiogram). We will stay in the hospital for 2 nights. I am happy that at least "now things are happening" but I am also terrified that "now things are happening". We will have quite a wait after the angio as the nuero. says that the surgery takes a lot of planning (unlike if it was an emergency) and a lot of people to co-ordinate.
I acknowledge how lucky we are that we found Paddy's AVM before he bleed which is unlike most people's stories that I have read. It gives us a few more options (and some time to accept it).
Thank you for reading our story.
I will update the story as Paddy's treatment progresse.
Update: 15 October 2005
Patrick has had his angiogram. It was performed a couple of weeks ago but we had to wait until yesterday to meet his Neurosurgeon to discuss the implications of it. When we arrived at the Starship Hospital we were put in the High Dependency Unit as the room that he was to go into was not yet ready. I cannot believe the insensitivity of this. In hindsight I should have taken him off to the cafeteria or off for a walk. What we saw was really the most frightening visions. Young children very ill with brain injuries and the sort. Joe (husband) looked like he was going to pass out so I suggested that he come back later when. Patrick and I had it all under control (yeah, right)! Patrick told me that he was very scared. Luckily then his room became available.
In all, we were in the hospital for 2 nights. Patrick was put under general anesthesia for the procedure because of his age. He fought off the gas mask and had to be held down (he also had to be held down for his blood test). Poor baby!
We met with the Neurosurgeon yesterday to discuss the implications of the angiogram. He was adamant that surgery really is the best treatment for Patrick. The AVM is too large for gamma knife. He mentioned several times the word "speech". It looks kind of inevitable that Patrick will lose some of his. Still, we will put our trust in the surgeon. The risks of doing nothing are too big. How do we forgive ourselves if we do nothing and he dies? How do we forgive ourselves if we elect to have the surgery done and he dies? I guess we just make the best decision for him that we can and just trust!
Update: 22 January 2006
It has been a while since our last update that I thought it was time to do it!
The news is really that there is no news! Argh!!!!!
Patrick (and Mum and Dad) is still waiting on a surgery date. I am unsure about the Christmas holiday period in the rest of the world but here in New Zealand, things (not shops) practically close down until the beginning of February. We still have 2 1/2 weeks until school begins. I would have loved Paddy's surgery to be performed before the Christmas break but alas, that wasn't to be so we are still here! Still waiting. I do hope that his Neurosurgeon is having the most relaxing and happy holiday of his life.
I applied to "Make-A-Wish foundation" for Patrick to have a wish granted. Before Christmas they were waiting on confirmation that his condition was life threatening from the Neurosurgeon. I received a letter this week to say that the Neurosurgeon had now confirmed this and they would be coming to meet Paddy soon. This sounds like good news right? In one way yes, we would love Paddy to have a wish granted (he wants an adventure playground and a mini golf course in the backyard). The reality for his parents is rather sadder! It means that we didn't read more into what the Neurosurgeon had told us. We had hoped that we may have misread the info. or exaggerated it a little.
I am forever grateful for the support that I have received through this site. Jessica's Gran (Joan) has become my Gran too (actually, a very good friend) and I check my emails regularly to keep abreast of where Jessica is at. When Patrick was first diagnosed I received an email from Fiona from Sunny Scotland. I can't find your email otherwise I would get in touch personally. You told me (and I remember crying buckets at the time) that there is light at the end of the tunnel but unfortunately it is a very long and dark tunnel. You were so right but I get the feeling that we are still only at the beginning. I have received support from so many other corners of the world. I thank you all so much. I don't feel alone which I think was the whole point of this site.
I will update you when we get a date. Take care my friends!!!!
Update: 13 March 2006
I spoke to the hospital booking clerk today who told me that Patrick's surgery is confirmed for April 2 (embolization) and April 3 (actual surgery) - remember, it's the 1st and 2nd for our US friends. The stress of waiting for this date has been tremdous and I suspect it has taken a small toll on my marriage. I am relieved that Paddy has a date but why do I feel like "sh-t"? These next three weeks will be so precious!
We won't be telling Paddy for a couple of weeks yet. Ignorance is bliss to an 8year old. I will discuss it with him a few days prior.
In the meantime, life carries on. Patrick recieved a "Principal's Certificate at school today for "An enthusiastic attitude in all areas of his work". He was sooo proud but who do you think was taking the photo? My heart was bursting with love and pride for this special gift of a child.
I will let you know how we are holding up soon.
Update: 18 March 2006
Unbelievable!! Embolization and Surgery dates have been put back a week. Now 10 and 11 of April. One of the consultants became unavailable.
We told Paddy about the surgery in the weekend. He has been quite emotional and his classroom teacher tells me he was not himself today at school. He is a strong little boy!
My mum and her partner have booked a hotel suite beside the hospital for the week of surgery so that they can be close and we can use for privacy if needed. Where would we be without our parents? It doesn't matter how old you are, you still need your mum!
Update: 25 March 2006
The phone rang again on Friday afternoon. Due to a lack of surgical nurses, Patrick's surgery is to be post phoned until further notice. ANGRY does not cover it! I have experienced the full spectrum of emotions (except any of the good ones). I have written a very lengthy and emotive letter to our local member of Parliament, the Minister of Health and the Chairperson of the Auckland District Health Board. I spoke personally to the surgeon yesterday and he too is upset by this. I will be giving the government a week to respond and then it is to the media who have expressed interest in this.
Neither course of action is the sort that I like, I am not really a confrontational person but it is now necessary to be an advocate to save me wee lads life.
Update: 30 March 2006
Our two major television stations featured our plight tonight. It will also be in the two major newspapers tomorrow. We are being discussed on talkback radio (this I do not like). I have here is a link to One News website where it gives a quick run down of what was said. Anyway, both programmes finished by telling the Casey Family (us) that the hospital hopes to phone us within the next few days with a new concrete date. Watch this space. Unfortunately I do feel that the Minister of Health and the Auckland District health Board may be trying to discredit me a little but hey, their backs are to the wall some what! Watch this space.
Update: 11 April 2006
We certainly went public. Although we have many television stations in NZ, we have 2 major ones. I have been on both news programmes at prime time then again on the late news (twice- 2 separate days - almost one week apart). Paddy and I have been on the front page of the largest newspaper. We have been discussed and debated about in Parliament. We have been fully supported on Talkback radio. Major industries (i.e.. the airport (employs hundreds) the Fire Department, the Education Department etc (and they are only the ones that I am personally aware of) have been circulating a letter I wrote to my colleagues. People all over NZ have been emailing the Ministry of Health demanding something be done for Patrick.
The actual Minister of Health was publicly rude and arrogant about the whole situation last week (in NZ you cannot sue for comments made in Parliament). He implied that there was more than one side to this story and if the Member of Parliament who brought the issue up in Parliament knew the whole story, he would change his stance immediately. This was outrageous and caused quite a backlash from the public.
The Minister of Health is now under incredible pressure for a result. He pressured the health board to release a press statement to say that our family would be given a date within the next two days. This date was not given but we were given an appointment to come and discuss the situation with the General Manager, the Service Manager and the Neurosurgeon at the hospital. The General Manager of the hospital did write me a letter explaining how she saw the situation. In that letter there was some incorrect information about Paddy's AVM and aneurysm. She also wrote that "despite having the possible implications of surgery explained to you, have been very keen to proceed with surgery." This really hurt as I'm sure you can appreciate. The meeting date was broadcast on TV the night before (two nights ago).
We went along for the meeting. Mum and Joe both came. We were well prepared with documentation. I had all the research information that I had accumulated over the months, I had letters from the Neurosurgeon, pediatrician, the media, government etc. We were ready for a fight. We didn't get one! We began by discussing the letter. I was so angry and needed to address what had been written. I set that horrible woman straight. I told her the medical facts (fancy that , I told her. She should've known). I also told her that her statement about keenness was the cruelest thing that I have ever heard. My family concurred. She was gob smacked (means was surprised). She said that that was 'hospital' speak and that they will be reviewing their language policies when corresponding with patients and their families to ensure that this does not happen again. GREAT!
Then she explained the nursing situation. I was not really interested in hearing their excuses but in the nature of good will I listened. Blah blah! I reminded her that I am only concerned with saving the life of my son.
Then the neurosurgeon spoke. He was obviously the most powerful and authoritive person from the hospital sitting there. They listened to him very carefully (as we did). He explained Paddy's health situation. Everytime he talks about it I feel sick. We discussed surgery vs. non surgery and the possible implications of both. We discussed that his AVM may rupture in 30 years or 3 minutes. He said that because of Paddy's young age, a rupture at some stage was almost certain. He said that the large size of the AVM meant that a rupture would likely be fatal.
That's my son! It was the first time that my mum had met the surgeon and she did not take it very well (neither did Joe). I remained stone faced as I felt that it was important to take the facts in and really hear all that was being said. I really needed to be 'present'. So now all the doubts about whether we were doing the right thing that had crept in since that letter from the hospital had been put to rest. Thank goodness! Still, not easy to hear.
The surgeon clearly stated that if it was his child, he would proceed with surgery. He said that his team and the nuerointerventionalists (embolization people) would be available on May 8 and 9. Could we set the date for then he asked. The General Manager looked like she would choke! She had previously told us that the nurses they had employed from overseas would not be starting until May and wouldn't be orientated enough until June. Someone was telling porkies or didn't have all the facts! Still, she sat there and agreed that they would do their utmost to ensure that this date happens.
We had done some research into doing the surgery overseas but the reality is that by the time it is all organised (remembering that as Paddy hasn't ruptured we have the luxury of planning every detail carefully), his NZ date would have passed. So, we are agreed that this is Paddy's new date. They did say that there is still no guarantees. There is still many things that could prevent this from happening but they are really focused on making it happen. The GM clearly told me that she is under a lot of media and Ministry pressure to ensure that this surgery is done soon. I did ask what would happen if we keep getting bumped off the list, she ensured me that this will not happen. I'm sure it would be the end of her career (and that of the Minister of Health) if something happened to my son waiting for this surgery.
All that said, the neurosurgeon had to leave for another appointment. The GM was clearly shocked by the details of Patrick's AVM and was quiet for some time. GOOD!
The hospital later released a press statement (with my permission) saying that the meeting was postitive and that a positive outcome had been reached. Positive? The only positive outcome would have been 'We are sorry Mr and Mrs Casey. We made a mistake and your son does not have an AVM at all. He is fine' Mmmmm! I like that outcome best.
Update: 24 April 2006
We just arrived home from a wonderful family holiday where I can honestly say that Paddy had the time of his life (so far). Upon arriving home there were 2 letters from the hospital. It seems that Paddy's embolization and surgery will not be one day after the other now. Patrick will have his emboization on Tuesday 2 May with his surgery the following Tuesday 9 May (don't forget New Zealand is a day ahead of the States)! Hopefully these days will hold. Only a week to go.
Update: 8 May 2006
As I write this (8 May, 7:38:19 pm eastern daylight saving time), Paddy is out of surgery. He had his embolization yesterday. They said it wasn't as successful as they had hoped but the surgeon said that he got the worst part (I think he said that)! Everything has been a bit of a blur.
The plan was to keep Paddy well drugged up over night but the surgeon decided that he needed to check what functions (if any) had been affected. I am happy (understatement) to announce that Paddy was every inch the gorgeous boy he always has been. He responded to all commands and even gave a "little" cheek!
I spent the night curled up on a reclining chair in the pediatric intensive care unit. Paddy didn't sleep well as there was a baby there recovering from heart surgery who cried all night (poor thing) so we told each other little jokes and planning our overseas holiday for when this is all over.
I'd better get back to it! I can't wait to see the love of my life smile and say "Hi Mummy".
Update: 15 May 2006 (submitted on 12 May)
The news is........absolutley fantastic!!!!!!!!!
The surgery took 10 hours and we got a call from the surgeon to say that all went to plan. The surgeon reiterated to me before surgery that this really was at the upper limits of what was possible so when he said that that it was excellent surgery, our hearts soared!
We went into pediatric intensive care and there he was. He looked a bit rough with all the tubes etc but he looked pretty good. They took his breathing tube out after 2 hours. After about another hour Paddy whispered "I need a drink of water" That is the best thing I have EVER heard in my life. My whole family were sobbing!
Everyday Paddy has got stronger. 3 days in Intensive Care, 2 days in a High Dependency Unit and now into a private room where I can sleep too. Yesterday he took a few steps and was happy to be pushed around in a wheel chair. Today he just won't shut up!!!! He is so chatty. His best mate came in to see him and it was just like prior to surgery. There is some weakness in his right arm and some sentences take a while to come out but I truely expect that we are looking at the best case senario. The surgeon has been busy bragging to the ward staff about it. We are happy to hear it! He said that Paddy's speedy recovery really is out of the ordinary.
I know there is some work ahead but we have our beutiful little boy back! Life doesn't get better than that.
Update: 20 May 2006
The news keeps getting better for Patrick!
We took him back to the hospital for his follow-up angiogram yesterday after having had a wonderful evening at home. Immediately after the procedure I was taken into the recovery room (children are given a G.A. for the procedure) and Paddy was smiling away. We went back up to the ward where he had to lay still for 6 hours. The surgeon was in an urgent operation so was not able to discuss the findings with us but we were told that we would be phoned over the weekend. However, the nurse gave me a wink and said that the news is good and I should read the discharge Clinical Summary. It clearly says "Post - op angiogram showed no residual AVM". That's it! Fixed! Hang on, I just took a call from the surgeon and "Yes, it's all gone!"
I read my narrative last night from start to finish and was alarmed that I had initially written that they were planning to remove Paddy's entire left temporal lobe. I must've only heard some of that sentence as I can assure you that this was not the case. I guess in the initial stages of all this, information can be hard to take in.
I had a sleep in this morning (given that we drank a bit of champagne last night) and awoke to the sound of Paddy laughing. He had cooked his own breakfast (with supervision from his dad). He is asking if his friend can sleep over and definitely wants to go to school on Monday. I will take him in for an hour on Monday and see how that goes. Slowly is the best way.
Life is finally rosy again. I no longer worry that my child could die at any moment. I am so relieved that we were able to do this surgery while Paddy was healthy. The surgeon told me afterwards (as he had suspected all along) that the AVM was so large that a pre-operative bleed would have been fatal and the best that they could've done for Paddy would be to make him comfortable. I will be writing again at some stage to the Minister of Health and letting him know that. Something needs to be done to step up the urgency for such "Elective" surgery. I will not let this go away.
Update: 17 July 2006
I am touched by the fact that people still ask after Paddy so I thought a quick update was in order!
In less than 3 months, it is incredible to think that Patrick has had major brain surgery (let alone life threatening surgery). If it wasn't for the scar (which is often hidden by hair) no one would ever guess the trauma that he has been through. He continues to do EVERYTHING that he used to do. He swims underwater (snorkeling) for 2 hour periods (yes he does surface before I have to jump in), and his teacher reports that he is still as clever as always. I do think that he has more energy and some family members report that his speech has improved.
Joe and I still weep when we think of all he (and we) has/have been through. It was the worst time of our lives that has changed us all forever. We will never take his precious life for granted. We are so grateful for all we have. We really must be the luckiest family in the world.
Update: 4 August 2006
We had the surgical follow-up appointment this morning. The surgeon was delighted with Paddy. He too is surprised at how little deficit Paddy has. He thinks Paddy is incredible (as we do too). The surgeon will refer Paddy on for vision testing to establish how much peripheral vision loss there has been (not much we suspect). He said that it will be a while before the appointment but we are in no hurry. He did say something though that took me a little by surprise. He said that in adults, once an AVM is gone, it is gone. In children, it is a little different. He said that there is a small chance (2-5%) that it may come back! I know that that is small but ARGH!!! Does anyone know why they may come back in children?
Paddy will have another angiogram in 2 years time. I will try hard to put that small chance at the back of my mind but I know that it won't go too far from the back!
Joe and I were talking afterwards about hindsight. If we had known before Paddy's conception that this would happen, would we still go ahead with having him? One look at "Our Beautiful Little Boy" confirmed that as 'absolutely'. The joy of being Patrick's mum outweighs whatever pain we have gone through.
Update: 26 August 2006
I am trying not to worry! One night last week Paddy complained of being very tired and wanted to go to bed at 6pm (normal time for him is 8pm). He hadn't had and didn't want his dinner. We put him to bed and he promptly went to sleep. We didn't think too much of it other than perhaps being a big day at school. I went into his room an hour later to check up on him to find that he had lent over his top bunk and had vomited. He did not call out but had gone straight back to sleep. We woke him up to clean his teeth etc. He was fully coherent and just went back to sleep after the big clean up.
Last night at 7pm he became very tearful and said he wanted to go to bed. he again had not had his dinner as we were running late. As it was Rockstar Supernova night and he loves that programme (not a spelling error, that's how we spell it in New Zealand), he decided to lay on the couch and watch it. He lasted about 2 minutes before falling asleep. Well we thougt he was asleep until he responded to a comment that we had made. He then said that he wanted to vomit and he did so. He lay back down, told us that if Toby sis not get voted off, we should vote for him next week, then went to sleep.??????
I rang his amazing, wonderful, clever neurosurgeon today and he told me that I should get Paddy checked out by his G.P. He also said that he may need a blood test and that we should not treat childhood illnesses as just that for a while. Better to sit on the side of caution. I did as he suggested and took Pads off to the docs. He suggested (the G.P.) that it may be a sulphur (I think he called it that-could be wrong) deficiency. He said that it sometimes happens after brain surgery and causes you great lethargy. However he also said that that does not explain the vomitting. He also said that it may well be seizures. We will have to now wait on the result of the blood test and also wait and see if it happens again. Not sure what we'll do if it's seizures. Not really the end of the world but I'm his mum and am entitled to worry about him!
A very good friend of the family suggested today that we should toughen Paddy up a bit. I think that that person has never had a child with a life threatening condition! I love Paddy just the innocent way he is! Only 4 weeks to our holiday on the Gold Coast of Australia. He's very excited.
Update: 26 October 2006
I began this narrative with the words "Our beautiful little boy will be 8 years old next month". I am delighted to tell you all that our beautiful little boy will be 9 years old the day after tomorrow! What a year. What a journey. What an outcome. What triumph!
We went to the Gold Coast of Australia for our planned holiday a few weeks ago and it was wonderful to catch up with Lynn Robertson and her family. We had a great day at Australia Zoo and it was unbelievable to talk face to face with another AVM family member. It was like we had known each other for ages. I suppose the fact that we share our most awful fears and frustrations (and now some triumphs too) makes the bond really easy.
Paddy has not had any recurrence of the vomiting that he experienced a few weeks back so maybe it was just a virus. Yahoo! We had to go back to the hospital to have his peripheral vision checked the other day. No one wants to tell you anything, so we will have to wait until the neurosurgeon gets back to me. Again, we are in no hurry. No matter how much vision was lost (and we think that it must be minimal, if any) there is nothing that can be done so why worry about it. When we find out, we will just be better informed and can make adjustments for it (if needed).
He does have some task completion issues in the classroom, however, I teach the same age level and know that this is fairly common in boys his age! LOL! His teacher tells me that he has lost some of his confidence. We will work on that. I can deal with this!
Paddy's grandfather binds books for a hobby and he made Paddy the most amazing book about the lead up to his surgery, the surgery subsequent hospital stay and the following weeks. Patrick is really proud of it and tells us that he is the bravest boy in the country!
Update: 6 January 2007
We really had a great Christmas and New Year this time around. The last festive season was rather grim but this one was all about celebration. The build up to Christmas was rather difficult however. I found myself quite depressed and tearful. Paddy had been falling asleep in class after lunch and still showing a lack of concentration. He would forget instructions before getting back to his desk.
I took him to the pediatrician who promptly told me that he had no experience dealing with children who had had surgery like Paddy (ARGH...starting to sound familiar). He also told me that Paddy was demonstrating classic ADD (Attention Deficit Disorder) and wanted to prescribe him Ritalin. Well BOLLOCKS! I am not a doctor but I know that my son does not have ADD. Upon expressing my surprise to the doctor, he told me that he would consult with our Neurosurgeon to see if this is common among children who have had brain surgery (gee, what do you think)! As has been the case throughout this whole experience, we have not heard back yet. However, Paddy has in some ways deteriorated over the last few days.
Since Christmas (about 11 days) he has vomited 6 times followed by a sleep. This is almost how it all began. He can talk after vomiting which is always a relief. I took him to our family doctor yesterday to make sure that nothing serious was happening. The doctor thinks that Paddy may be fitting but wants to discuss having an EEG (epilepsy, not another AVM) with the pediatrician (nobody wants to commit). So I guess we will just wait. Paddy is a pretty skinny kid so I don't think he can afford to vomit much!
This sounds a little grim but I promise that Paddy is having a lovely Christmas holiday. Tonight he and a mate are sleeping in his playhut. He has had so much fun in it since he got it. Paddy also spent some time away with his Nana and Granddad. They visited the site of the Hobbit Village from Lord of the Rings. The tour guide kept saying that Paddy was the right height for a Hobbit which delighted him! He climbed a small mountain and has swam almost every day. Upon arriving home, Paddy ran hard and fast into my arms yelling "Mummy, Mummy". It was just like in the movies and I was delighted!
Update: 18 May 2007
Last week we celebrated 1 year since Paddy's surgery. In that year he has joined the "Cubs-Scouts", learnt how to play the violin (almost ready for his first exam), can now swim multiple lengths in his swimming class, has been placed in the top maths group for his age group at school and has now become the sole boy in one of the school's netball team. Not bad!!!!
The only thing that worries us medically at the moment is the fact that he has contracted a wart virus (we suspect that it may have come from a blood transfusion in hospital as it appeared about 3 weeks after surgery). It is not a worry in that it is important or painful, it just doesn't look very nice. Isn't that wonderful that that is our worry!!!!!! Life is great!
We are off to the Gold Coast of Australia again next week. Make-A-Wish has taken on our national air carrier (Air New Zealand) as a major sponsor and is sending 30 children (each with 1 parent), media and celebrities to the Gold Coast to launch their new relationship. It is only for 2 nights but should be lots of fun. Paddy was randomly drawn from a list of "healthy to travel" children on their books. Luck us! It is almost the middle of winter here and 3 days of sunshine sounds really good to us!!!
Update 15 June 2008
Patrick had his 2 year follow-up angiogram 3 weeks ago. Sadly they found some AVM still there. We are devastated. He did have an angiogram 2 weeks after surgery which gave him the all clear so I don't really understand what happened - the radiographer suggested that due to the fact that things were probably still swollen, it may not have shown up. So, tomorrow we are off for an MRI followed by an appointment with the neurosurgeon three days later to discuss the implications. My concern is that the fact that they did not remove that part of the AVM may mean that it is deep and inoperable. We will find out soon I guess. It's been a rough time for Patrick.
Update 18 March 2009
Patrick was admitted to hospital over the Christmas period to have his AVM embolized.. Unfortunately they had to pull out due to the fact that the veins were too narrow and they feared causing a stroke. So it was back to the Neurosurgeon to plan where to next. It has been decided to surgically remove the AVM. Patrick is more concerned about the smell of the 'sleeping gas' rather that the prospect of another craniotomy! Fortunately Joe and I have become better at asking for a sedative for him. We expect to receive a surgery date in the coming weeks.
Update 16 August 2009
Patrick is off for another craniotomy on Tuesday 18 August (in just 3 days). He is being admitted on Monday. At least this time the AVM is smaller and with a much slower flow. It is expected to take roughly 3-4 hours which is much quicker than last time so hopefully the recovery will be quicker too.
Discussion, comments, or questions: Vanessa Casey
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