Another good day today. We were able to go and eat together again and Patrick enjoyed our little walk with the buggy. Isaac seemed to enjoy it too and he was very hands on with his little brother. He was very sweet and kept stroking Paddy's face and eye occasionally!
Poor Paddy has got a cold now it seems and it was quite strange giving him such an innocuous medicine as calpol(R). It seemed quite inferior compared to the other drugs he has been (and remains) on. He has had a slightly raised temperature and looks pretty cute with very rosy cheeks.
Again, he is even more vocal today and is joining in with the conversation more. He is still feeling the effects of the ventilator and when he coughs, he sometimes follows it with the most sweet yet pathetic little squeak which breaks your heart to hear.
Given his age, we are wondering if it is a cold or if maybe he is teething. Such a normal thing that seems so strange given the surroundings. Everything has a surreal feeling in the Hospital. Us going for a walk with the little boys is really strange, freeing yet with constant reminders of our lack of freedom. Sounds dramatic I imagine but very difficult to explain how it feels.
Anyway, it is still all positive, even with Patrick's cold, so bring on the rest of the week cos our baby is coming home! Yay!
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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We are casting soon for the film of the blog but we are not sure if Angelina Jolie and Bob Hoskins are available though.
Monday 28 May 2007
Sunday my Prince will come.... (sorry)
Not a lot to add really for sunday. We had a nice day with Patrick and he is just getting better and better with each reduction of the medication. He is more vocal every day and he is really interacting now too.
We are waiting until the Neuro comes back to see us again just to get confirmation of what they think is wrong with Paddy but even the Nurses are aware that the plan is to release him this week! Let's hope the plan comes together so we can post the final Hospital Episode of this blog soon.
We may keep the blog going until such time as he is fully out of the woods but will play that by ear.
Love to all of you, this could have been so much harder for us without your support and help.
From The Conyard Gang
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We are waiting until the Neuro comes back to see us again just to get confirmation of what they think is wrong with Paddy but even the Nurses are aware that the plan is to release him this week! Let's hope the plan comes together so we can post the final Hospital Episode of this blog soon.
We may keep the blog going until such time as he is fully out of the woods but will play that by ear.
Love to all of you, this could have been so much harder for us without your support and help.
From The Conyard Gang
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Sunday 27 May 2007
Saturday Special
We had a great day yesterday (Sat) and were allowed to take Patrick out for a walk in his buggy. It made us feel quite 'normal'. Yippeeeee!
Patrick was absolutely over the moon and was cooing away as he was able to see the different lights on the ceilings of the corridors and the sunshine when we went outside. It was a magical moment for us. Then it got cold and we went in again! We were also able to go to the restaurant together and eat with Patrick next to us, something else we take for granted but was special yesterday too.
Gemma nipped out and bought a new cot which will be delivered this week, as we need to get things straight for Patrick's release. (Time off for good behaviour I think) We seem to be on track for him being allowed home this week and there is no point putting him back into his Moses basket when he has been in such a big cot for the past four weeks. It just hit me then that it IS 4 weeks today since this whole episode started. Seems so much longer somehow!
Anyway, Gemma and Isaac nipping to Southampton proper, gave me a nice afternoon alone with Paddy. I was able to feed him (which in itself is a whole routine because he has to be sat with his head forward to avoid him choking) and I got to change his nappy (a bit of planning on Gemma's art, methinks)and then a lot of play too. At one point, we both nodded off while having a cuddle on Gem's 'Z' bed, which was lovely too.
Patrick was obviously tired from getting out in the fresh air and Gemma bathed him before settling him with a bottle. He had his 6 o'clock meds a bit early because once he is asleep it is very hard to wake him and it was clear that he was about to sleep.
I got home with Isaac and got him ready for bed and then got a text at about half eight from Gemma - The Hospital Pharmacy had run out of the Pyradoxil medication which Patrick was due to have at eight!
They eventually located some - at Gt Ormond Street - and it was being delivered asap. I assume that Peter Pan was busy as it arrived by taxi at some time after 12 I think it was. The hardest part about this is that this is the medication that is NOT being reduced or cut out because this is the one they think is actually stopping his seizures. So important is it that it was allowed to run out! Anyway, they have had to write out incident reports and such like so I hope someone gets their knuckles rapped. I was all for going up there and pointing out the error of their ways (Gently, of course) but my wife being the sensible one, calmed me down.
Anyway, all is well that ends well and all that malarkey and he got his meds eventually. In fairness to the Nurses, they did all they could do to locate the Pyrodoxil and contacted the Neurologist at home etc to ensure that he was safe. (Patrick, not the Neurologist!)
I am going to go back to the Hospital soon and will update the blog again later with any news etc.
Love to all from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxxxxxxxxxxx
Patrick was absolutely over the moon and was cooing away as he was able to see the different lights on the ceilings of the corridors and the sunshine when we went outside. It was a magical moment for us. Then it got cold and we went in again! We were also able to go to the restaurant together and eat with Patrick next to us, something else we take for granted but was special yesterday too.
Gemma nipped out and bought a new cot which will be delivered this week, as we need to get things straight for Patrick's release. (Time off for good behaviour I think) We seem to be on track for him being allowed home this week and there is no point putting him back into his Moses basket when he has been in such a big cot for the past four weeks. It just hit me then that it IS 4 weeks today since this whole episode started. Seems so much longer somehow!
Anyway, Gemma and Isaac nipping to Southampton proper, gave me a nice afternoon alone with Paddy. I was able to feed him (which in itself is a whole routine because he has to be sat with his head forward to avoid him choking) and I got to change his nappy (a bit of planning on Gemma's art, methinks)and then a lot of play too. At one point, we both nodded off while having a cuddle on Gem's 'Z' bed, which was lovely too.
Patrick was obviously tired from getting out in the fresh air and Gemma bathed him before settling him with a bottle. He had his 6 o'clock meds a bit early because once he is asleep it is very hard to wake him and it was clear that he was about to sleep.
I got home with Isaac and got him ready for bed and then got a text at about half eight from Gemma - The Hospital Pharmacy had run out of the Pyradoxil medication which Patrick was due to have at eight!
They eventually located some - at Gt Ormond Street - and it was being delivered asap. I assume that Peter Pan was busy as it arrived by taxi at some time after 12 I think it was. The hardest part about this is that this is the medication that is NOT being reduced or cut out because this is the one they think is actually stopping his seizures. So important is it that it was allowed to run out! Anyway, they have had to write out incident reports and such like so I hope someone gets their knuckles rapped. I was all for going up there and pointing out the error of their ways (Gently, of course) but my wife being the sensible one, calmed me down.
Anyway, all is well that ends well and all that malarkey and he got his meds eventually. In fairness to the Nurses, they did all they could do to locate the Pyrodoxil and contacted the Neurologist at home etc to ensure that he was safe. (Patrick, not the Neurologist!)
I am going to go back to the Hospital soon and will update the blog again later with any news etc.
Love to all from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxxxxxxxxxxx
Friday 25 May 2007
The Changing Man..........
Hello to all of Paddy's fans! We had some encouraging news today so I thought I should share it with you. The Neurologist came along this afternoon and I causally asked if there was any idea of how much longer Patrick was to be in Hospital. I was quite surprised when she said that she hoped he would be out at the end of next week!
She also said that she hoped that he would be OFF the medication in time for that to be possible. As you can imagine, I asked her to repeat what she had said, she did and I then asked her to explain cos I was sure that I was getting this wrong. It seems that the current plan is to wean him off of the Vigabtrin completely by Tuesday if possible and then the same with the Phinabarbetone (spl?) by the end of the week.
As pleased as I was, I still wasn't sure that I had got it right and then the senior on call Neurologist stopped by and said pretty much the same except that she was hoping that Patrick would be able to come home sometime around Wednesday. It seem that they are not convinced that it is not a vitamin problem and he will be staying on the supplements for that but will be taken off the other two mentioned above.
I have asked Gemma to confirm all of this with them over the weekend in case I have got it wrong but I am sure I have got it right so watch this space.
Love from
Martin, Gemma, Ash, Billy, Isaac and Paddy
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She also said that she hoped that he would be OFF the medication in time for that to be possible. As you can imagine, I asked her to repeat what she had said, she did and I then asked her to explain cos I was sure that I was getting this wrong. It seems that the current plan is to wean him off of the Vigabtrin completely by Tuesday if possible and then the same with the Phinabarbetone (spl?) by the end of the week.
As pleased as I was, I still wasn't sure that I had got it right and then the senior on call Neurologist stopped by and said pretty much the same except that she was hoping that Patrick would be able to come home sometime around Wednesday. It seem that they are not convinced that it is not a vitamin problem and he will be staying on the supplements for that but will be taken off the other two mentioned above.
I have asked Gemma to confirm all of this with them over the weekend in case I have got it wrong but I am sure I have got it right so watch this space.
Love from
Martin, Gemma, Ash, Billy, Isaac and Paddy
xxxxxxxxxxxxxxxxxxx
Thursday 24 May 2007
Easy does it
Today has been another positive day. Patrick's first night on the lower dose of Vigabatrin gave him more awareness and made him more active. It also made him more awake which meant Gemma was also more awake. Most of the night in fact!
We are hoping that if the meds are reduced even more, Patrick will be more like his old self soon. He still hasn't cried, which must sound an awful thing to wish for but for us it is one of the signs of normality that will mark his recovery.
So, not much else to report just yet but at least there is nothing negative.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
(Look out for the upcoming Patrick brand merchandise available for summer. Avilable in all good stores and some rubbish ones too.)
We are hoping that if the meds are reduced even more, Patrick will be more like his old self soon. He still hasn't cried, which must sound an awful thing to wish for but for us it is one of the signs of normality that will mark his recovery.
So, not much else to report just yet but at least there is nothing negative.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
(Look out for the upcoming Patrick brand merchandise available for summer. Avilable in all good stores and some rubbish ones too.)
Wednesday 23 May 2007
Same wit - different day
Welcome back. Patrick has been seen by a Neuro again today and she felt happy that he was progressing OK. The decision has been taken to reduce his medication from this evening and having just spoken to Gemma, he seems to be more active with the lower dose.
Gemma managed to escape today and went to Southampton with her Mum, Auntie Sue and Isaac. I actually felt quite sorry for the poor unsuspecting people of Southampton and settled down to finishing Patrick's bottle. He is feeding quite well when he is in his chair and he had a good guzzle.
Once he had finished his bottle,we had some serious cuddles and he got much kissing from Daddy. About an hour later, the Physio came along and put him through his paces with movement exercises to try to increase his muscle tone. This has dropped a bit due to him being so immobile during his comas and he just has to be encouraged to move his arms, legs and head fully. At the moment, his legs are not too bad but his arms stay out from his body and slightly raised so she wants us to make him bring his arms across his chest more. Another thing that she wants us to keep an eye on is that he favours his right side with his head. Basically he lays with his head to his right and looks off into the distance. If you approach him from that side, he will track you with his eyes but he tends to just swivel his eyes in your general direction if you approach from his left. The Physio has asked us to avoid coming towards him from his right side so that he has to start moving his head to the left in order to engage with us. I noticed that he will do this eventually but he is a bit lazy with it just now and turns his eyes as far as he can and then obviously decides we are not that interesting. When I rattle one of his noisy toys from that side, he will put more effort into it! Says something about us I guess haha.
For the Medics amongst us, he currently has just one cannula in his left hand and I am guessing this is for quick access for meds if the reduction does not have the desired effect. Other than that, he just has the pulse/Oxygen Saturation monitor probes on his foot. I am not sure which med(s) has/have been reduced and to be honest, I am not entirely sure which ones he is on currently. (Gemma does all the shopping so she probably knows!)
So.... the next few days will hopefully show an improvement in Patrick's awareness and control of his body without a slip back into the seizure activity. Keep your fingers crossed and we will speak to you soon, hopefully with good news.
Love to all from
Martin, Gemma, Ash, Billy, Isaac and Paddy
xxxxxxxxxxxxxxxxxxxxxxx
Gemma managed to escape today and went to Southampton with her Mum, Auntie Sue and Isaac. I actually felt quite sorry for the poor unsuspecting people of Southampton and settled down to finishing Patrick's bottle. He is feeding quite well when he is in his chair and he had a good guzzle.
Once he had finished his bottle,we had some serious cuddles and he got much kissing from Daddy. About an hour later, the Physio came along and put him through his paces with movement exercises to try to increase his muscle tone. This has dropped a bit due to him being so immobile during his comas and he just has to be encouraged to move his arms, legs and head fully. At the moment, his legs are not too bad but his arms stay out from his body and slightly raised so she wants us to make him bring his arms across his chest more. Another thing that she wants us to keep an eye on is that he favours his right side with his head. Basically he lays with his head to his right and looks off into the distance. If you approach him from that side, he will track you with his eyes but he tends to just swivel his eyes in your general direction if you approach from his left. The Physio has asked us to avoid coming towards him from his right side so that he has to start moving his head to the left in order to engage with us. I noticed that he will do this eventually but he is a bit lazy with it just now and turns his eyes as far as he can and then obviously decides we are not that interesting. When I rattle one of his noisy toys from that side, he will put more effort into it! Says something about us I guess haha.
For the Medics amongst us, he currently has just one cannula in his left hand and I am guessing this is for quick access for meds if the reduction does not have the desired effect. Other than that, he just has the pulse/Oxygen Saturation monitor probes on his foot. I am not sure which med(s) has/have been reduced and to be honest, I am not entirely sure which ones he is on currently. (Gemma does all the shopping so she probably knows!)
So.... the next few days will hopefully show an improvement in Patrick's awareness and control of his body without a slip back into the seizure activity. Keep your fingers crossed and we will speak to you soon, hopefully with good news.
Love to all from
Martin, Gemma, Ash, Billy, Isaac and Paddy
xxxxxxxxxxxxxxxxxxxxxxx
Tuesday 22 May 2007
Tuesday's News
Well today brought the results of the EEG that was carried out yesterday. The Neurologist found them to be hopeful but there is still background activity going on that show signs of ' a potential for seizure' although no direct seizure activity was evident.
Promising stuff but it means that there is still an underlying problem that is as yet unresolved but baby steps before running and all that. The Neuro, Dr Thomas now wants to adjust Patrick's medication to see if we can get to a level where he has near normal response but still protection from the seizures. At present we are hopeful that Paddy can have any degree of normality and a minimum risk of seizure, whether this can be achieved - only time will tell really.
Because he is so young, I think it is going to be a case of waiting to see how he develops to see if any developmental problems arise. It looks likely that there will be problems but as to how severe or how often etc, we can't say. All we can say is that whatever the challenge, Patrick will have the top support available - US! (And you all too, no doubt.) The hardest part of all of this is that he just looks like such a (I hate this word) Normal.
I watched some film that I took of Patrick prior to his illness and showed it to Gemma. There are some possibly odd little movements that he makes and we now wonder whether symptoms were presenting themselves but we just hadn't seen them for what they were, or maybe we are now just trying too hard to see where, when and how it all started. I am sure we will never really know and maybe it isn't important to see how it started, we just need to work out where we go from here, now that we know about it.
On a more upbeat note, Patrick was visited and checked over by a nice Speech and Language therapist today. She watched as Gemma fed him and listened to his swallow and suck reflex with a stethoscope. He seems to have secretions pooling in his throat which are causing him some irritation but is otherwise coping well with bottle feeds. The physio terrorist (my little joke) also looked in and suggested putting him in his chair when feeding him as this allows his head to move forward better and so aids his swallowing. Gemma put him in the chair and this did indeed seem to make a difference. I think the speech therapist was looking towards having his tube put back in to err on the side of caution but changed her mind when she saw the improvement the chair made. We were both happy about that as so far we have seen Patrick moving forward, little by little and re-fitting his tube would have felt like a step backwards.
We mentioned to the speech lady about the fact that Patrick doesn't cry - (he didn't even cry when a cannula was inserted into his hand last night after we thought he may have been having very subtle seizures. We appear to be wrong though thank God)but she said it is quite possible that his voice box may be a bit bruised as a result of the ventilator being used during his comas. She has asked that one of the respiratory Doctors to check his larynx, just to be on the safe side. We will update you on that too as and when.
Again - a bit more upbeat - Gem was able to give him a bath while I was there and I joined in too. Isaac was trying to spur him on to splash me and for one very surreal moment you could almost imagine us being at home and having a normal bath time with the nippers. Very strange feeling for a minute! It is funny how little things that are taken for granted mean so much when they are given back to you after a period without them.
Any hoooo, I am going to leave it there for now. I will probably come back to this and revise parts or add more but this will probably be in the morning now as I am a bit tired and the old head is drifting.
Thanks for all the good wishes and love that is being sent.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxx
Promising stuff but it means that there is still an underlying problem that is as yet unresolved but baby steps before running and all that. The Neuro, Dr Thomas now wants to adjust Patrick's medication to see if we can get to a level where he has near normal response but still protection from the seizures. At present we are hopeful that Paddy can have any degree of normality and a minimum risk of seizure, whether this can be achieved - only time will tell really.
Because he is so young, I think it is going to be a case of waiting to see how he develops to see if any developmental problems arise. It looks likely that there will be problems but as to how severe or how often etc, we can't say. All we can say is that whatever the challenge, Patrick will have the top support available - US! (And you all too, no doubt.) The hardest part of all of this is that he just looks like such a (I hate this word) Normal.
I watched some film that I took of Patrick prior to his illness and showed it to Gemma. There are some possibly odd little movements that he makes and we now wonder whether symptoms were presenting themselves but we just hadn't seen them for what they were, or maybe we are now just trying too hard to see where, when and how it all started. I am sure we will never really know and maybe it isn't important to see how it started, we just need to work out where we go from here, now that we know about it.
On a more upbeat note, Patrick was visited and checked over by a nice Speech and Language therapist today. She watched as Gemma fed him and listened to his swallow and suck reflex with a stethoscope. He seems to have secretions pooling in his throat which are causing him some irritation but is otherwise coping well with bottle feeds. The physio terrorist (my little joke) also looked in and suggested putting him in his chair when feeding him as this allows his head to move forward better and so aids his swallowing. Gemma put him in the chair and this did indeed seem to make a difference. I think the speech therapist was looking towards having his tube put back in to err on the side of caution but changed her mind when she saw the improvement the chair made. We were both happy about that as so far we have seen Patrick moving forward, little by little and re-fitting his tube would have felt like a step backwards.
We mentioned to the speech lady about the fact that Patrick doesn't cry - (he didn't even cry when a cannula was inserted into his hand last night after we thought he may have been having very subtle seizures. We appear to be wrong though thank God)but she said it is quite possible that his voice box may be a bit bruised as a result of the ventilator being used during his comas. She has asked that one of the respiratory Doctors to check his larynx, just to be on the safe side. We will update you on that too as and when.
Again - a bit more upbeat - Gem was able to give him a bath while I was there and I joined in too. Isaac was trying to spur him on to splash me and for one very surreal moment you could almost imagine us being at home and having a normal bath time with the nippers. Very strange feeling for a minute! It is funny how little things that are taken for granted mean so much when they are given back to you after a period without them.
Any hoooo, I am going to leave it there for now. I will probably come back to this and revise parts or add more but this will probably be in the morning now as I am a bit tired and the old head is drifting.
Thanks for all the good wishes and love that is being sent.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
xxxxxxxxxxxxxxxxxx
a bit of a delay with this post
Hi all
sorry for the delay in this post but there wasn't much to report until yesterday and neither of us had the energy to update before now.
Patrick had a good weekend really. He became more aware with each day and was happy to have a play when we took him out of his cot.
Yesterday was the best day for a long while and early on Gemma noticed that he was both willing and able to suck on her finger! Straight away she asked the staff if would be okay for her to try him on a bottle and was given the go ahead.
He took longer than usual but he did manage to drain the lot, much to Mummy's extreme pleasure. I think that the loss of feeding Patrick was one of those things that Gemma had really mourned, so she was over the moon. He ended up feeding from then on and continues to do so. Gem was also able to give him a proper bath too and during his towell down, his gastric tube came out. Pure accident but the staff decided that because he was feeding normally, he didn't really need it in anymore so it was left out. That was another little milestone too as it was the last invasive tubing that was left. He now just has a stick on probe for his pulse and oxygen saturation monitor now.
One thing that has become evident is that whatever routine we had at home with Patrick is now long gone and he has been entertaining Gemma through the night and allowing her to have very peaceful days while he sleeps. How kind he is! I think that will change as soon as Gemma can make it!
I have not been able to get to the hospital as much as I would like because I have had a serious bout of 'boy - flu' as Gemma sympathetically calls it. While Patrick was in the High Dependency Unit, we felt it would be very selfish for me to go in and risk passing any infection to the other kiddies there. Patrick was being filled with anti biotics for his chest infection so he would not have been at risk but we didn't know the status of the other poorly ones.
Anyway, all back to normal now and Martyr that I am, I can resume my proper visiting.
I have added a couple of pictures of our little fighter so you can all see how ell he looks now. All we are waiting for is the EEG result so we can find out the next stage of the plan.
Keep checking in with us here for updates which I hope to get done a bit more frequently. Love to everyone,
from the Conyard mob
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sorry for the delay in this post but there wasn't much to report until yesterday and neither of us had the energy to update before now.
Patrick had a good weekend really. He became more aware with each day and was happy to have a play when we took him out of his cot.
Yesterday was the best day for a long while and early on Gemma noticed that he was both willing and able to suck on her finger! Straight away she asked the staff if would be okay for her to try him on a bottle and was given the go ahead.
He took longer than usual but he did manage to drain the lot, much to Mummy's extreme pleasure. I think that the loss of feeding Patrick was one of those things that Gemma had really mourned, so she was over the moon. He ended up feeding from then on and continues to do so. Gem was also able to give him a proper bath too and during his towell down, his gastric tube came out. Pure accident but the staff decided that because he was feeding normally, he didn't really need it in anymore so it was left out. That was another little milestone too as it was the last invasive tubing that was left. He now just has a stick on probe for his pulse and oxygen saturation monitor now.
One thing that has become evident is that whatever routine we had at home with Patrick is now long gone and he has been entertaining Gemma through the night and allowing her to have very peaceful days while he sleeps. How kind he is! I think that will change as soon as Gemma can make it!
I have not been able to get to the hospital as much as I would like because I have had a serious bout of 'boy - flu' as Gemma sympathetically calls it. While Patrick was in the High Dependency Unit, we felt it would be very selfish for me to go in and risk passing any infection to the other kiddies there. Patrick was being filled with anti biotics for his chest infection so he would not have been at risk but we didn't know the status of the other poorly ones.
Anyway, all back to normal now and Martyr that I am, I can resume my proper visiting.
I have added a couple of pictures of our little fighter so you can all see how ell he looks now. All we are waiting for is the EEG result so we can find out the next stage of the plan.
Keep checking in with us here for updates which I hope to get done a bit more frequently. Love to everyone,
from the Conyard mob
xxxxxxxxxxxxxx
Saturday 19 May 2007
My 2 Pence!
Just to add to what Martin said really, the reason for the EEG being put back was purely because no-one had organised it in time for Friday! I think it was a bit of miss-communication among Neurologists, never mind.
Patrick had a stable night, although the little munchkin needs to re-set his body clock as he was awake until 1am! I don't know, there's just no pleasing me, it was only a few days ago I was sat by his bed pleading with him to wake up, last night I was back to pleading with him to go to sleep! When he finally drifted off he snored like a trooper (he's still a bit chesty and I don't suppose the tube down his nose helps) so I had quite a restless night. When I did wake up this morning the nurse told me that Patrick had been awake a few times during the night but just sits quietly looking around so I hadn't noticed. One of the things that concerns me a bit is that I haven't heard him cry since this whole fiasco began. It's not that I want my baby to be upset it's just strange as even the best behaved babies cry sometimes. Another thing that isn't quite right is that although he is able to focus on your face or a toy, he won't hold that focus for more than a couple of seconds, he continuously looks around him. I have voiced my concerns with the Neurologist who isn't too worried as it can take a long time for people to get 'back to normal' after being so poorly. A friend of mine at the hospital has a 3yr old boy in the same ward who was admitted around the same time as Patrick having suffered from a massive seizure himself. When he came round he had totally lost the ability to speak, walk or do anything really, he has had to re-learn all these things again and he is doing really well but is still obviously not right. I guess I'm thankful that Patrick is so young and so hasn't got all these things to re-learn. How well is able to do all these things in the future, only time will tell.
Anyway, Martin is on the day shift so I can spend some time with Isaac and he is nagging me to play 'Guess Who?' with him, I love it, nothing like a game of guess who to take your mind off your troubles!
Patrick had a stable night, although the little munchkin needs to re-set his body clock as he was awake until 1am! I don't know, there's just no pleasing me, it was only a few days ago I was sat by his bed pleading with him to wake up, last night I was back to pleading with him to go to sleep! When he finally drifted off he snored like a trooper (he's still a bit chesty and I don't suppose the tube down his nose helps) so I had quite a restless night. When I did wake up this morning the nurse told me that Patrick had been awake a few times during the night but just sits quietly looking around so I hadn't noticed. One of the things that concerns me a bit is that I haven't heard him cry since this whole fiasco began. It's not that I want my baby to be upset it's just strange as even the best behaved babies cry sometimes. Another thing that isn't quite right is that although he is able to focus on your face or a toy, he won't hold that focus for more than a couple of seconds, he continuously looks around him. I have voiced my concerns with the Neurologist who isn't too worried as it can take a long time for people to get 'back to normal' after being so poorly. A friend of mine at the hospital has a 3yr old boy in the same ward who was admitted around the same time as Patrick having suffered from a massive seizure himself. When he came round he had totally lost the ability to speak, walk or do anything really, he has had to re-learn all these things again and he is doing really well but is still obviously not right. I guess I'm thankful that Patrick is so young and so hasn't got all these things to re-learn. How well is able to do all these things in the future, only time will tell.
Anyway, Martin is on the day shift so I can spend some time with Isaac and he is nagging me to play 'Guess Who?' with him, I love it, nothing like a game of guess who to take your mind off your troubles!
Friday 18 May 2007
The Magical Mystery Tour......
Well, Patrick had hardly unpacked his bags from yesterday when it was decided that he would now be allowed to re-join the outside world in the General Ward! (The world outside special care that is.)
He is now on ward G1 which is a normal Paediatric care ward and it means that Isaac can get to see him again, which he did, in fact, today. Isaac is especially pleased because there is a play room with loads of toys and games and seeing as Paddy is too small/ill etc................. well, it would be rude of Isaac not to play with it all for him!
This move is great news in terms of Patrick's road to recovery and both Gemma and I are obviously very happy that he is responding so well to the treatment but the other side of this coin is that the level (not quality) of care reduces too. In intensive care he had a nurse sat at the end of his bed, 24/7. Not the same nurse obviously as they take it in turns! In High Dependency, there are two Nurses looking after 4 beds. In the general ward 1 nurse looks after a number of kids who are in small rooms and separate from each other. Pretty much.
So because we are worrying parents, we have decided that one of us needs (wants) to be there 24/7. (like the nurses, we take it in turns, silly.) There is no reason to our worrying as the staff are wonderful but we want one of us to be there if Patrick wakes up so at least he isn't just amongst strangers.
When I left this evening he was just about waking up and Gemma was just about ready to doze off so I imagine her blog entry tomorrow may have some rude words in it.
He has still not taken any food from a bottle so they are feeding him via his tube but we hope that the speech and language person will come and assess him on Monday. He is still having his meds orally too which is nice because he doesn't have to have a cannula in place. Poor little man has bruises on top of bruises where they have had to try so many different places to get blood out or medication in. These bruises should now clear up at least.
The Neurologist came by and was really chuffed with Patrick's appearance and has now decided to have the EEG done on Monday. As I think we mentioned, it was due for today but this has been postponed. I am not sure what the reasoning for that was but I trust him to know his job, so we will wait and see how that goes.
Paddy is sounding better and looking so much better than even yesterday and is still not displaying any fits. Again, whilst we are encouraged by this, it still remains to be seen what the EEG shows us before we can start whooping from the roof. (I am currently half way up the ladder, standing by for that bit of good news!)
I can't really think of anything more to say right now but have no doubt that this whole post will be edited by my lovely wife (of 5 years, today incidentally) because she writes so much better than I do and takes more notice of what actually goes on in the Hospital.
So, nighty night everyone. Keep the prayers going for my little fighter and thank you all for such loving and strong support. I tell no lies when I say that your strength has kept us all going.
Nunight Paddy and Mummy from
Daddy, Ashley, Billy and Isaac
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He is now on ward G1 which is a normal Paediatric care ward and it means that Isaac can get to see him again, which he did, in fact, today. Isaac is especially pleased because there is a play room with loads of toys and games and seeing as Paddy is too small/ill etc................. well, it would be rude of Isaac not to play with it all for him!
This move is great news in terms of Patrick's road to recovery and both Gemma and I are obviously very happy that he is responding so well to the treatment but the other side of this coin is that the level (not quality) of care reduces too. In intensive care he had a nurse sat at the end of his bed, 24/7. Not the same nurse obviously as they take it in turns! In High Dependency, there are two Nurses looking after 4 beds. In the general ward 1 nurse looks after a number of kids who are in small rooms and separate from each other. Pretty much.
So because we are worrying parents, we have decided that one of us needs (wants) to be there 24/7. (like the nurses, we take it in turns, silly.) There is no reason to our worrying as the staff are wonderful but we want one of us to be there if Patrick wakes up so at least he isn't just amongst strangers.
When I left this evening he was just about waking up and Gemma was just about ready to doze off so I imagine her blog entry tomorrow may have some rude words in it.
He has still not taken any food from a bottle so they are feeding him via his tube but we hope that the speech and language person will come and assess him on Monday. He is still having his meds orally too which is nice because he doesn't have to have a cannula in place. Poor little man has bruises on top of bruises where they have had to try so many different places to get blood out or medication in. These bruises should now clear up at least.
The Neurologist came by and was really chuffed with Patrick's appearance and has now decided to have the EEG done on Monday. As I think we mentioned, it was due for today but this has been postponed. I am not sure what the reasoning for that was but I trust him to know his job, so we will wait and see how that goes.
Paddy is sounding better and looking so much better than even yesterday and is still not displaying any fits. Again, whilst we are encouraged by this, it still remains to be seen what the EEG shows us before we can start whooping from the roof. (I am currently half way up the ladder, standing by for that bit of good news!)
I can't really think of anything more to say right now but have no doubt that this whole post will be edited by my lovely wife (of 5 years, today incidentally) because she writes so much better than I do and takes more notice of what actually goes on in the Hospital.
So, nighty night everyone. Keep the prayers going for my little fighter and thank you all for such loving and strong support. I tell no lies when I say that your strength has kept us all going.
Nunight Paddy and Mummy from
Daddy, Ashley, Billy and Isaac
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Thursday 17 May 2007
Out of Intensive Care!!
Hiya, Patrick has had another good day today, still no fits!
He has been wide awake and enjoying lots of cuddles all day. He was moved out of Intensive Care at around 2:30pm. He is now back on high dependancy, which is 2 nurses to 4 beds so he is still in very safe hands, recieving lots of special attention. He still has his feeding tube, I did try and give him a bottle this afternoon but he didn't really take to it, wasn't sucking at all. He has been reffered to a speech and language therapist who will assess whether he is able to swallow properly and hopefully she'll be able to help get him back on the bottle. He will have another EEG tomorrow so fingers crossed that comes back with a slightly better result than before. He's still very rattly and sounds a bit like Darth Vader at the moment but he is coughing well and clearing his chest so hopefully that will clear up soon.
Anyway, it will be a long day tomorrow but hopefully another good one. We are taking Isaac in to see his little brother so he's really excited as he's missed him loads.
Thanks again for all your support and good wishes.
Wednesday 16 May 2007
Our little fighter, awake at last!
Lots of reasons to smile today as our strong baby boy has done so well in the last 48hrs. He had started to show signs of waking yesterday but nothing could prepare us for seeing him wake up properly this afternoon. We were told by the nurses when we got to the hospital that he had been awake a couple of times in the morning but when we got there at lunchtime he was sound asleep just as he has been for over a week. After about an hour there, and with no warning Patrick woke up! It was magic to see him open his big blue eyes and look right at us. He looks so much better than he did 2 days ago, we are really thrilled with the progress he is making. Not only did our baby wake up today which was enough to cheer us up, but at 2 o'clock, his Dr decided he was strong enough to take him off the ventilator! He is now awake and breathing for himself and has had no physical fits in the last 48hrs.
I was able to to give Patrick a proper cuddle this afternoon, without the restrictions that all the tubes and wires bring, I was able to hold him right in close and sit him up, pat his back and give him lots of kisses! What's brilliant as well is that his physiotherapist has said that cuddles are really good for his recovery so to give him lots.
When they first took him off the ventilator they gave him an oxygen mask but by 5pm they took that away as well as he was doing so well. He stayed awake for hours while I washed him and changed him (the lactulose finally seems to be working!), he's still a little spacey but that's not surprising with the amount of drugs he's on. He's able to follow you with his eyes and responds well to sounds as well which is good. He's still got a bit of a dodgy chest so was coughing a lot and continuously dribbling but they use a long suction tube down his throat to clear him out and they also gave him a nebuliser for a little while to help him get comfortable enough to sleep.
Dr Thomas came round briefly this afternoon as was also really pleased that he seems to be responding well to the treatment. We probably won't get a clear picture of just how well he's doing until the end of the week when he will hopefully get another EEG but all the signs are encouraging.
I've just had a fright as the phone rang and I saw the hospital number come up, it was just his nurse Fran phoning to say she's just starting her shift and can't believe how well he looks and how great he's doing! The staff are as excited and as pleased as we are at his progress which is great. He's getting quite a following now as the nurses in every ward he's been on are all phoning for up-dates, even the nurses at Poole hospital have phoned several times to check on his progress.
Another thing that Fran just mentioned is that tomorrow I might be able to feed him! They're probably going to turn off his feeding tube for a few hours to make him hungry and see how he reacts and whether he can feed properly. I can't wait!
Well, it's been a long and emotional day and no doubt now that Patrick is not in a permanent slumber and we can do a lot more for him, the days ahead will be even longer and more hectic. So, I am going to do the sensible thing and get an early night, hopefully I'll sleep a lot better knowing that at the moment, things are looking up.
I was able to to give Patrick a proper cuddle this afternoon, without the restrictions that all the tubes and wires bring, I was able to hold him right in close and sit him up, pat his back and give him lots of kisses! What's brilliant as well is that his physiotherapist has said that cuddles are really good for his recovery so to give him lots.
When they first took him off the ventilator they gave him an oxygen mask but by 5pm they took that away as well as he was doing so well. He stayed awake for hours while I washed him and changed him (the lactulose finally seems to be working!), he's still a little spacey but that's not surprising with the amount of drugs he's on. He's able to follow you with his eyes and responds well to sounds as well which is good. He's still got a bit of a dodgy chest so was coughing a lot and continuously dribbling but they use a long suction tube down his throat to clear him out and they also gave him a nebuliser for a little while to help him get comfortable enough to sleep.
Dr Thomas came round briefly this afternoon as was also really pleased that he seems to be responding well to the treatment. We probably won't get a clear picture of just how well he's doing until the end of the week when he will hopefully get another EEG but all the signs are encouraging.
I've just had a fright as the phone rang and I saw the hospital number come up, it was just his nurse Fran phoning to say she's just starting her shift and can't believe how well he looks and how great he's doing! The staff are as excited and as pleased as we are at his progress which is great. He's getting quite a following now as the nurses in every ward he's been on are all phoning for up-dates, even the nurses at Poole hospital have phoned several times to check on his progress.
Another thing that Fran just mentioned is that tomorrow I might be able to feed him! They're probably going to turn off his feeding tube for a few hours to make him hungry and see how he reacts and whether he can feed properly. I can't wait!
Well, it's been a long and emotional day and no doubt now that Patrick is not in a permanent slumber and we can do a lot more for him, the days ahead will be even longer and more hectic. So, I am going to do the sensible thing and get an early night, hopefully I'll sleep a lot better knowing that at the moment, things are looking up.
Tuesday 15 May 2007
What a difference a day makes!
Well, what a contrast. Patrick had a very restful night with no seizures which was great news. When we got to the hospital we were very relieved to see our favourite nurse Fran was in, especially after the last few days we've had, Fran is such a bubbly person and never fails to make us feel at ease and positive.
Anyway, on to the important stuff...
Patrick is getting more and more awake now which is fantastic to see, he even managed to open his eyes! Very briefly and only half open but he definitely opened them voluntarily so we all whooped for joy! He has been responding to touch and sound with very subtle movements but it is all encouraging. Since they dropped the phenatoin yesterday evening he hasn't had any visible fits, not even any twitches, this is all positive signs and Dr Thomas, Patrick's Neuro has also said this is encouraging.
Another great thing from our point of view is that they have managed to remove half the wires and needles from his tiny body. They've taken out his catheter so I can now change his nappy! Little things like that make so much difference to us, everything we would normally take for granted or turn our noses up at, mean so much to us now after more than a week of not being able to do these things for our baby. Having less wires etc also makes giving him a cuddle easier which is fantastic.
One bit of not so positive news today is that Patrick has developed a slight infection in his left lung. This is fairly standard for someone who has been on a ventilator for any amount of time because of the build up of fluid. They are giving him anti-biotics for this (another one to add to the list!) and don't expect this to cause any problems for him. Fingers crossed, as long as his chest has cleared up enough they may be able to take him off the ventilator by the end of the week.
I know we have a long road ahead of us and are still no closer to getting any firm diagnosis or prognosis but for now, just the prospect of seeing our baby breathing for himself is enough to give us strength and hope that we may eventually get to bring our baby home.
Anyway, on to the important stuff...
Patrick is getting more and more awake now which is fantastic to see, he even managed to open his eyes! Very briefly and only half open but he definitely opened them voluntarily so we all whooped for joy! He has been responding to touch and sound with very subtle movements but it is all encouraging. Since they dropped the phenatoin yesterday evening he hasn't had any visible fits, not even any twitches, this is all positive signs and Dr Thomas, Patrick's Neuro has also said this is encouraging.
Another great thing from our point of view is that they have managed to remove half the wires and needles from his tiny body. They've taken out his catheter so I can now change his nappy! Little things like that make so much difference to us, everything we would normally take for granted or turn our noses up at, mean so much to us now after more than a week of not being able to do these things for our baby. Having less wires etc also makes giving him a cuddle easier which is fantastic.
One bit of not so positive news today is that Patrick has developed a slight infection in his left lung. This is fairly standard for someone who has been on a ventilator for any amount of time because of the build up of fluid. They are giving him anti-biotics for this (another one to add to the list!) and don't expect this to cause any problems for him. Fingers crossed, as long as his chest has cleared up enough they may be able to take him off the ventilator by the end of the week.
I know we have a long road ahead of us and are still no closer to getting any firm diagnosis or prognosis but for now, just the prospect of seeing our baby breathing for himself is enough to give us strength and hope that we may eventually get to bring our baby home.
Monday 14 May 2007
Mary Poppins - Childcare expert? I don't think a spoon full of sugar would touch this lot!
The medication that Patrick has been and/or is still receiving is listed below:
Pyridoxil Phosphate (Anti Convulsant = A/C)
Sodium Valporate (A/C)
Prednisolone (A/C)
Vigabatrine (A/C)
Phenobarbitone (A/C)
Lactulose
Folinic Acid
Phenytoin (A/C Now Stopped)
Frusamide
Spirolactene
Patrick has also been given Thiopentin which is a barbiturate and is used to induce a coma. This has now been stopped too.
Poor little fellow is doped up to the hilt.
Pyridoxil Phosphate (Anti Convulsant = A/C)
Sodium Valporate (A/C)
Prednisolone (A/C)
Vigabatrine (A/C)
Phenobarbitone (A/C)
Lactulose
Folinic Acid
Phenytoin (A/C Now Stopped)
Frusamide
Spirolactene
Patrick has also been given Thiopentin which is a barbiturate and is used to induce a coma. This has now been stopped too.
Poor little fellow is doped up to the hilt.
A Nightmare Day...
It's been a long day today, waiting for his Lumbar Puncture and then his EEG and trying to get to speak to Patrick's Neurologist who at the moment is the only person to still have something positive to say.
Basically, Patrick's EEG results from lunchtime today are still showing frequent seizure activity, in fact I don't really think much has changed from the last EEG he had done last week.
Although Patrick is only having very mild physical fits, just the odd twitch, this is more down to the fact that he is still heavily sedated and he is actually still fitting as much as he was. Obviously this is extremely frustrating for us and for the medical team as they are trying desperately to stop these seizures and the longer this goes on the more problems it could cause.
Patrick is showing signs of waking up, although the strong medication he's on will sedate him, he responds to touch and sound which is great but not so great when the nurses are trying to insert more needles for more wires etc which they have had to do a lot today. They are seriously running out of good veins they can use to give him his medication as some of the meds he is receiving are so strong and gloopy that his tiny veins just can't handle it. Thankfully this may not be too much of a problem for a few days at least because they have managed to sort out his medication so that they can all be given orally to give his veins a break.
We managed to have a chat with Dr Thomas (Patrick's Neuro') this afternoon and although he is careful not to get our hopes up too high, he has given us some assurance that there will be an end to the seizures at least. He has explained that even if they are unable to control the fits, all fitting will eventually burn itself out. Obviously it would be better for Patrick if they can find a combination of drugs that will control the seizures but either way there will be an end to them eventually. Dr Thomas has also said that it may take weeks to see any change or for anything to work. As I understand it at the moment they are giving his current meds a 2 week trial. If they haven't worked then they will try something else. All the while they will be running tests to try and establish a cause. It is some comfort to us that Dr Thomas is able to refer to other patients who have had similar experiences and that he has seen children take 6 weeks or more to respond to treatment. This could be a very long process but as Dr Thomas says, finding a combination of drugs that will work for Patrick will be difficult but not impossible. We also have to be aware though that even if we get the fits under control, until we know what has caused all this we won't be able to know what his outlook will be once the fitting is over.
We have been a bit beaten down this weekend as we have had a lot of negative comments thrown at us from various Dr's and nurses, all trying to help I'm sure. At the moment we are trying our best to stay strong and positive for our baby and hope everyone else can do the same. Sometimes, even with the best intentions, people can give us too much information. We are not too dim witted and know the possible outcomes but it seems that some people find it hard not to try and second guess the questions we are not asking and then give us answers we don't want or are not ready to hear. Particularly when the Neuro Specialist has already given us his views and we then get possibly less informed opinions on what he meant by what he said. I am probably rambling a bit here but we both find it very frustrating to receive a glimmer of hope only to have it stolen away again. Grrrr
Having said all this, the care Patrick is getting is superb and we cannot fault it. All of the medical staff and nursing team are very dedicated and are very kind. We couldn't ask for better care for our baby boy.
Anyway, stay strong, keep the faith and keep sending the love! A very long list of the various meds will follow this post but for now our other baby needs putting to bed!
Love from
Martin, Ashley, Billy, Isaac and the main man Paddy boy!
Basically, Patrick's EEG results from lunchtime today are still showing frequent seizure activity, in fact I don't really think much has changed from the last EEG he had done last week.
Although Patrick is only having very mild physical fits, just the odd twitch, this is more down to the fact that he is still heavily sedated and he is actually still fitting as much as he was. Obviously this is extremely frustrating for us and for the medical team as they are trying desperately to stop these seizures and the longer this goes on the more problems it could cause.
Patrick is showing signs of waking up, although the strong medication he's on will sedate him, he responds to touch and sound which is great but not so great when the nurses are trying to insert more needles for more wires etc which they have had to do a lot today. They are seriously running out of good veins they can use to give him his medication as some of the meds he is receiving are so strong and gloopy that his tiny veins just can't handle it. Thankfully this may not be too much of a problem for a few days at least because they have managed to sort out his medication so that they can all be given orally to give his veins a break.
We managed to have a chat with Dr Thomas (Patrick's Neuro') this afternoon and although he is careful not to get our hopes up too high, he has given us some assurance that there will be an end to the seizures at least. He has explained that even if they are unable to control the fits, all fitting will eventually burn itself out. Obviously it would be better for Patrick if they can find a combination of drugs that will control the seizures but either way there will be an end to them eventually. Dr Thomas has also said that it may take weeks to see any change or for anything to work. As I understand it at the moment they are giving his current meds a 2 week trial. If they haven't worked then they will try something else. All the while they will be running tests to try and establish a cause. It is some comfort to us that Dr Thomas is able to refer to other patients who have had similar experiences and that he has seen children take 6 weeks or more to respond to treatment. This could be a very long process but as Dr Thomas says, finding a combination of drugs that will work for Patrick will be difficult but not impossible. We also have to be aware though that even if we get the fits under control, until we know what has caused all this we won't be able to know what his outlook will be once the fitting is over.
We have been a bit beaten down this weekend as we have had a lot of negative comments thrown at us from various Dr's and nurses, all trying to help I'm sure. At the moment we are trying our best to stay strong and positive for our baby and hope everyone else can do the same. Sometimes, even with the best intentions, people can give us too much information. We are not too dim witted and know the possible outcomes but it seems that some people find it hard not to try and second guess the questions we are not asking and then give us answers we don't want or are not ready to hear. Particularly when the Neuro Specialist has already given us his views and we then get possibly less informed opinions on what he meant by what he said. I am probably rambling a bit here but we both find it very frustrating to receive a glimmer of hope only to have it stolen away again. Grrrr
Having said all this, the care Patrick is getting is superb and we cannot fault it. All of the medical staff and nursing team are very dedicated and are very kind. We couldn't ask for better care for our baby boy.
Anyway, stay strong, keep the faith and keep sending the love! A very long list of the various meds will follow this post but for now our other baby needs putting to bed!
Love from
Martin, Ashley, Billy, Isaac and the main man Paddy boy!
Sunday 13 May 2007
No news is good news?
Hi all,
Not really much to add today to be honest. Patrick was taken off the thiopentone as I mentioned before but has now been put on Phenabarbitone which has also kept him sleeping. He hasn't had any of the 'violent' fits since coming off of the Thio but he has had several twitchy episodes with restful periods between them. We don't know whether this is an indication that the drugs are working but an EEG has been booked for tomorrow and we will see then if his brain is resting between them.
Obviously we are hoping this is the case because otherwise it will mean another round of tests for him and he is really getting bruised from all of the lines that are being put into him. In fact, they have put the most recent line into his scalp because they can't get a viable vein in his hand just now. We are also hoping that they don't have to take any blood from Patrick as his haemoglobin levels have been low as a result of the amount of blood they have already taken for tests etc.
Patrick has been getting diuretic drugs too because he is retaining fluid. This is quite normal apparently for anyone on a ventilator plus he is immobile which allows the fluid to collect too. The Nurses have to carry out physio therapy regularly to stop too much fluid building up in his lungs and this is then moved with the suction thingy.
We are also waiting on this special lumbar puncture test to be done. The bottle has not arrived as yet but hopefully it will arrive tomorrow. We are not getting our hopes up too much on the outcome of this test but who knows? Miracles can happen. On that note, I am off to bed now. Sorry if this entry is not up to the usual standard but we are both very, very tired.
Love to all
Martin, Gemma, Ash, Bill, Isaac and Patrick of course
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Saturday 12 May 2007
Another day dawns
Patrick came off the thiopentone yesterday and we were hoping that the Neurologist's confidence boded well but sadly Patrick fitted twice overnight and we are not sure what the next step is now.
Sounds encouraging that he only fitted twice but as we have seen before, he displays physically now and then but has been fitting constantly in his brain. We have not had another EEG yet and don't suppose there will be one before monday but we are both a bit disheartened to be honest.
We had hoped that the change of medication might have done the trick but if I am honest, I am not even sure what the trick is now. All we can do is wait and see what the neurologist decides. We now have a different Neurologist as they change them regularly. Maybe this will mean a new set of eyes will see something differently. That is what we are hoping and not because we are dissatisfied with the previous Neuro but just because we want our baby home. Soon.
Will update later
Love from all of us here
xxxxxxxxxxxxxxxxxxx
Sounds encouraging that he only fitted twice but as we have seen before, he displays physically now and then but has been fitting constantly in his brain. We have not had another EEG yet and don't suppose there will be one before monday but we are both a bit disheartened to be honest.
We had hoped that the change of medication might have done the trick but if I am honest, I am not even sure what the trick is now. All we can do is wait and see what the neurologist decides. We now have a different Neurologist as they change them regularly. Maybe this will mean a new set of eyes will see something differently. That is what we are hoping and not because we are dissatisfied with the previous Neuro but just because we want our baby home. Soon.
Will update later
Love from all of us here
xxxxxxxxxxxxxxxxxxx
Friday 11 May 2007
Encouraging News
Hiya,
Not too much to report as Patrick has still been in his coma but we have had some encouraging news. Patrick had an EEG done this morning, they wanted to get a good look as his brain while he was still in a coma to see if they had managed to stop the seizure activity as this could sway their decision to wake him up. We had the results back this afternoon and thankfully it showed that he was in a restful state of deep sleep with no sign of any seizures which was a relief and just the result they were hoping for. We are trying not to get too excited as it is still very early days but hopefully the stronger medication and new combination has started to have the desired effect and for now they have managed to control the seizures. They withdrew the Thiopentone (Anaesthetic) at about 3pm so the next 24-36hrs will be nail biting as we hope he will slowly wake up without having any seizures.
I was reasured again today that Patrick is recieving the best possible care for his condition. I was left totally amazed when I learnt that his Neurologist has been desperately trying to source a specific drug for Patrick. I'm not sure of the name but it is an anti-convulsant that he is currently recieving orally. She had heard that in some countries this drug is given intraveinously and seems to have a slightly better result. Apparently this version of the drug is not currently available in the uk but the pharmasist is on the case and has already been in touch with people in New York and throughout Europe to try and track it down. Even if they aren't able to source it, the effort all the team are putting in is just fantastic and we really couldn't ask for any more for our baby boy.
The Star of the show
I just thought I would add this picture of Patrick sleeping normally at home. This was not many days before he got poorly but it might help some of you get the not as nice picture (of how he is right now) out of your head.This is the way to picture him right now - as just asleep like normal - Gorgeous, don't you think? Keep the faith and all that.
Love from the Conyard Mob
xxxxxxxxxxx
and there's more...............
Hello everyone
sorry we have been a bit remiss this past couple of days but there has been little to report due to Patrick being put back into the coma as I think was said in the previous post.
We have been able to give Patrick cuddles and he has been washed every day by Gemma. She get's to give him proper washes and is able to moisturise his little body. It is also and excuse to give him lots and lots of kisses and he is powerless to resist!
Little things mean so much as we have already said elsewhere on here but yesterday (Thursday) he actually had a hand free of canulars or wires and we took it in turns holding his hand as he slept. It was lovely.
We found out yesterday morning that his blood pressure had dropped a little over the previous night but that was expected and he was given additional medication to remedy that. Having just spoken to the ICU Ward staff again this morning, it happened again last night. So it must be a night time thing for him it seems.
Talking of medication, his thiopentone was also upped as he apparently started breathing for himself again, little monkey! With the amount of medication he is on, he should be very deep in the coma but he does seem to prove them wrong. Funnily enough, we had pointed out that his eyes were flickering quite a bit during the day but had been told 'not to worry' but it seems Mummy and Daddy know best! We know our baby!
We have been told that they are to carry out another lumbar puncture before he wakes. This is because they want to test his neuro transmitters(?). This is a rare test to do and is carried out by the Institute of Neurology in London. Apparently they have to put the sample in a special bottle, sent from London and then immediately frozen and sent post haste to London. If nothing else, this test has further confirmed to us that they are trying everything possible and reassures us of the commitment of the neuro team. (Not that we need reassuring to be honest because they are wonderful.)
We are hoping that he will be getting another EEG today as he is due to come off the thiopentone so he can start to wake slowly over the next day or so. This time the EEG is to be started BEFORE the medication is stopped because the Neurologist (Fiona) wants to see what is going on in advance. Keep your fingers crossed that the new combination of medicines has done the trick and calmed his brain. Naturally we will start to keep the daily entries up to date now as we hope to have more to report each day when he is awake.
Not a lot else to say just now but I hope to be writing an essay later if we have lots of happy stuff to report. The smallest things make us happy so I apologise in advance if we go on a bit later. Actually, no I don't tee hee!
Thanks for all the continued support and prayers, positive thinking etc. It all means a lot to us and helps us to get through it every day.
Much love from
Gemma, Martin, Ashley, Billy, Isaac and a special thanks from Patrick
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sorry we have been a bit remiss this past couple of days but there has been little to report due to Patrick being put back into the coma as I think was said in the previous post.
We have been able to give Patrick cuddles and he has been washed every day by Gemma. She get's to give him proper washes and is able to moisturise his little body. It is also and excuse to give him lots and lots of kisses and he is powerless to resist!
Little things mean so much as we have already said elsewhere on here but yesterday (Thursday) he actually had a hand free of canulars or wires and we took it in turns holding his hand as he slept. It was lovely.
We found out yesterday morning that his blood pressure had dropped a little over the previous night but that was expected and he was given additional medication to remedy that. Having just spoken to the ICU Ward staff again this morning, it happened again last night. So it must be a night time thing for him it seems.
Talking of medication, his thiopentone was also upped as he apparently started breathing for himself again, little monkey! With the amount of medication he is on, he should be very deep in the coma but he does seem to prove them wrong. Funnily enough, we had pointed out that his eyes were flickering quite a bit during the day but had been told 'not to worry' but it seems Mummy and Daddy know best! We know our baby!
We have been told that they are to carry out another lumbar puncture before he wakes. This is because they want to test his neuro transmitters(?). This is a rare test to do and is carried out by the Institute of Neurology in London. Apparently they have to put the sample in a special bottle, sent from London and then immediately frozen and sent post haste to London. If nothing else, this test has further confirmed to us that they are trying everything possible and reassures us of the commitment of the neuro team. (Not that we need reassuring to be honest because they are wonderful.)
We are hoping that he will be getting another EEG today as he is due to come off the thiopentone so he can start to wake slowly over the next day or so. This time the EEG is to be started BEFORE the medication is stopped because the Neurologist (Fiona) wants to see what is going on in advance. Keep your fingers crossed that the new combination of medicines has done the trick and calmed his brain. Naturally we will start to keep the daily entries up to date now as we hope to have more to report each day when he is awake.
Not a lot else to say just now but I hope to be writing an essay later if we have lots of happy stuff to report. The smallest things make us happy so I apologise in advance if we go on a bit later. Actually, no I don't tee hee!
Thanks for all the continued support and prayers, positive thinking etc. It all means a lot to us and helps us to get through it every day.
Much love from
Gemma, Martin, Ashley, Billy, Isaac and a special thanks from Patrick
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Wednesday 9 May 2007
1 Step Forward, 3 Steps Back...
Well, I was hoping to have some good news to tell today, unfortunately yesterday was a bit of a roller coaster only without the fun part.
Basically, Martin went in to the hospital early in the morning and reported back excitedly that Patrick had started to respond to touch, he moved his foot when he was washed and had coughed when they were clearing his lungs. Such little signs of life sparked such excitement it's just bizarre to be in this position. Anyway, when I got there at about 1pm I too was able to witness subtle signs that he was slowly waking, his eyes flickered and when I held his hand he gripped. It was while I was sat stroking his hand that it all started to go pear shaped. I noticed that he started to grip and un-grip my hand rhythmically, I tried to ignore it at first then realised something definitely wasn't right and alerted the nurse, his whole arm was twitching! It didn't last long and we weren't certain it was a seizure so we held off medicating as his EEG was due. He had his EEG done and while they took that away for the results I grabbed a few moments with his Neurologist. While we were chatting he started to have a visible seizure. His eyes, mouth and right arm twitched rhythmically for about 1min. I could tell by his neuro's face this wasn't good. They gave him a shot of anti-convulsant which settled him. We arranged to have a meeting with the Neurologist later in the day when his EEG would be back and we could discuss his progress (or lack of it).
So, we were taken off to a side room with the consultants and his Intensive Care nurse and the decision was made to put him back in a coma for another 48 hrs. His EEG results had still shown constant seizure activity and various other abnormalities that they are yet to get to the bottom of. I get the impression they are completely stumped really as they explained that each of his EEG's have shown different brain patterns and whereas the one they took a few days ago seemed to suggest the seizures where coming in waves from one specific area which could narrow their search for a diagnosis, yesterdays EEG showed just as much seizure activity but seizures coming in a random pattern from all over the brain, suggesting something completely different.
They have now discounted any infection and so stopped treating him with anti-biotics. This means they are able to up the dose of the various other drugs and start him on a course of steroids as well, this will hopefully give him a better chance when he is woken up again in a couple of days time. For any medical bods that may be reading this (Sharon & Matthias) he is now on Thiapentone, Vigabatrim, Sodium Valproate and Prednislone.
They still haven't got all the test results back so there is still a chance this could be a metabolic problem but I get the impression this is less likely.
We are looking at some serious form of epilepsy. How serious and how well we can control this only time will tell. We have been warned this is gonna take a while to crack and that we are looking at weeks in hospital. As always, your help and support through all this is much appreciated.
I would like to reassure everyone at this stage that as a family we are very very strong and are coping very well under these very difficult circumstances. I'm sure a lot of you will be feeling very sympathetic at this time, however please be strong for our sakes and know that we have accepted that Patrick may be a very poorly bunny for a long time and may need extra special care as he grows, we are more than capable of providing him with the best possible care and all the love a child could wish for, the hardest thing for us at the moment is not being able to care for him as much as we would like to, we have a long wait ahead and will only be able to bring him home when it is safe to do so. So for now we have to rely on the professionals who are all doing a fantastic job, he really is in the best possible hands, with the best neurologist team in the country looking after him.
I will update this in a couple of days time when we have some more news, until then our baby must sleep and rest his little body, ready for round 2.
Basically, Martin went in to the hospital early in the morning and reported back excitedly that Patrick had started to respond to touch, he moved his foot when he was washed and had coughed when they were clearing his lungs. Such little signs of life sparked such excitement it's just bizarre to be in this position. Anyway, when I got there at about 1pm I too was able to witness subtle signs that he was slowly waking, his eyes flickered and when I held his hand he gripped. It was while I was sat stroking his hand that it all started to go pear shaped. I noticed that he started to grip and un-grip my hand rhythmically, I tried to ignore it at first then realised something definitely wasn't right and alerted the nurse, his whole arm was twitching! It didn't last long and we weren't certain it was a seizure so we held off medicating as his EEG was due. He had his EEG done and while they took that away for the results I grabbed a few moments with his Neurologist. While we were chatting he started to have a visible seizure. His eyes, mouth and right arm twitched rhythmically for about 1min. I could tell by his neuro's face this wasn't good. They gave him a shot of anti-convulsant which settled him. We arranged to have a meeting with the Neurologist later in the day when his EEG would be back and we could discuss his progress (or lack of it).
So, we were taken off to a side room with the consultants and his Intensive Care nurse and the decision was made to put him back in a coma for another 48 hrs. His EEG results had still shown constant seizure activity and various other abnormalities that they are yet to get to the bottom of. I get the impression they are completely stumped really as they explained that each of his EEG's have shown different brain patterns and whereas the one they took a few days ago seemed to suggest the seizures where coming in waves from one specific area which could narrow their search for a diagnosis, yesterdays EEG showed just as much seizure activity but seizures coming in a random pattern from all over the brain, suggesting something completely different.
They have now discounted any infection and so stopped treating him with anti-biotics. This means they are able to up the dose of the various other drugs and start him on a course of steroids as well, this will hopefully give him a better chance when he is woken up again in a couple of days time. For any medical bods that may be reading this (Sharon & Matthias) he is now on Thiapentone, Vigabatrim, Sodium Valproate and Prednislone.
They still haven't got all the test results back so there is still a chance this could be a metabolic problem but I get the impression this is less likely.
We are looking at some serious form of epilepsy. How serious and how well we can control this only time will tell. We have been warned this is gonna take a while to crack and that we are looking at weeks in hospital. As always, your help and support through all this is much appreciated.
I would like to reassure everyone at this stage that as a family we are very very strong and are coping very well under these very difficult circumstances. I'm sure a lot of you will be feeling very sympathetic at this time, however please be strong for our sakes and know that we have accepted that Patrick may be a very poorly bunny for a long time and may need extra special care as he grows, we are more than capable of providing him with the best possible care and all the love a child could wish for, the hardest thing for us at the moment is not being able to care for him as much as we would like to, we have a long wait ahead and will only be able to bring him home when it is safe to do so. So for now we have to rely on the professionals who are all doing a fantastic job, he really is in the best possible hands, with the best neurologist team in the country looking after him.
I will update this in a couple of days time when we have some more news, until then our baby must sleep and rest his little body, ready for round 2.
Monday 7 May 2007
Monday, Monday
Welcome or welcome back!
Today started with our usual phone call first thing and we were told that Patrick's medication (Thiopental) was stopped so it was up to him to come out of the coma now. I am not sure if I had thought he might be awake when we arrived to be honest but it was wishful thinking as the nursing staff say it will be at least tomorrow and possibly Wednesday before he even starts to wake up.
When we arrived we were both quite shocked at how swollen he was. This is quite normal apparently for anyone who is on a ventilator because they hold fluid and it is this fluid build up which causes the bloated look. Bless him, he looked like he had gone a few rounds with Amir Khan. They have given him some medication that will allow him to wee the extra fluid out and he should start looking better pretty soon.
In fact once he starts coming out of the coma properly, he will be able to come off of the ventilator and with the pipe removed, he should start looking better completely. Bless him, at the moment he looks Adam Ant because he has sticky plaster across his face and nose. I half expect him to start singing 'Prince Charming'!
We have asked that nobody comes to see him while he looks the way he does because he really does look bad but all of the pipes, tubes and tapes are there to benefit him so we keep trying to see past them. It is not a picture that you would want, so just think of him as he is in the pictures.
Talking of fluid retention etc, Patrick had to have a chest x-ray this morning as there is a risk of infection when on the ventilator. Apparently the normal secretions that we all have are not passed through the system as normal and so this has to be checked regularly. He also had these secretions sucked out using a thin tube attached to a hoover type thing. While this was being used the nurses had to rub his chest quite vigorously to loosen the fluidy stuff up. (You can see I am very technically trained what with the grasp I have on the terminology!!)
It was a nice day today in so far as Gemma was allowed to give Paddy a bed bath. It is funny how much pleasure we got from being able to touch him and actually do something for him. She was also able to dress him in one of his own baby grows too so he looked lovely by the time she had finished and it took the nasty edge off the way he looked. Then came the absolute magic - we were allowed to give him another cuddle and Gem was allowed to sit with him laying on her lap instead of him just being in his bed. The wires made it awkward but she was over the moon. Funny how we can take such simple things for granted but it was magic. We had been allowed to cuddle him a bit yesterday but today was even better.
The nursing staff in the paediatric intensive care unit are just fantastic people. The main girl who is looking after Paddy is Fran and she is a hero to us both. She is expecting her own baby in October and she treats Patrick like I imagine she will treat her own. She talks to him as if he is awake (which we do too) but she really does treat him so sweetly and us too. She can read us now and can see if we don't understand things etc and will go and get a Doctor to explain again if we need it. Little things mostly but she really makes a difference. We feel very comfortable leaving him in her care.
We found out today that this intensive care unit is the Regional Paediatric Intensive care unit. They have 9 beds that serve the whole of the region including the channel Isles! Can you believe that? 9 Beds for 12 hospitals to make use of! National Health - safe in our hands? Yeah righty ho. I hope I misheard the cost but it was something crazy like 5 grand per bed per day. I will check that and let you know but I am sure that is what we were told today.
Well on to tomorrow now. We hope to have the results of the culture tests that were done on Patrick's lumbar puncture samples tomorrow. That should confirm or rule out any infection that might be causing the fits but again, we are not getting our hopes too high. The Consultant Neurologist is of the opinion that they will prove clear so we are following her lead on that.
What we are hoping strongly for tomorrow is that Patrick will be awake enough for an EEG to be carried out. We are hoping that although he will be awake, the fits will be stopped now that the cycle has been broken. Unfortunately the fits will probably only be stopped temporarily so they will need to move quickly to get a steady reading of his brain activity. This will then be compared to the previous EEG report so that the neurologist can determine where the problem lies. We are not even considering what will have to be done if they miss the opportunity because the whole process of rest etc will have to be repeated. We assume. So keep your fingers crossed for a good result for Paddy please.
We have taken the advice of Fran, the nurse and have come home tonight as there is nothing we can do while we are up there and Patrick is unaware of our being there or not. Neither of us is happy leaving him but we have the other kids to consider and they need some level of normality so we are being with them when we can. It is hard having to change hats from sad parents while with Patrick and then happy with Isaac and supportive with Ash and Bill but what it takes is what is needed and so we do. Luckily we have you all for our support network and you probably will never know just how much that means and how much it helps us, so thanks yet again.
We have made the nursing team promise us that if there is any sign of Patrick waking (and there will be plenty of warning) they must phone us regardless of the time. Overnight it will only take me 20 minutes to get there so one or both of us can be there when he wakes.
Any hoooo, it is getting late now and I am on the early shift tomorrow so I am going to sign off now. This is the second flipping time I have written this post. I wrote a much nicer and more informative version a little while ago and my darn laptop decided to crash. You guessed it - I didn't save any of it! Nice one dumb dumb. Please keep your fingers crossed for Paddy tomorrow and I will let you know how it goes. Keep up the good thoughts and prayers, I have no doubt it all helps.
Thanks for taking the time to read today's post and thanks for all the texts, e-mails and voicemail messages too. You understand that we can't reply to them all as we have the phones off in the Hospital but then again, that's the point of this blog. Thank God for the Internet.
Love to everyone from
Martin, Gemma, Ash, Bill and Isaac.
Nighty night Patrick love you lots
Mummy, Daddy and your big Bros
xxxxxxxxxxxxxxxxxx
Today started with our usual phone call first thing and we were told that Patrick's medication (Thiopental) was stopped so it was up to him to come out of the coma now. I am not sure if I had thought he might be awake when we arrived to be honest but it was wishful thinking as the nursing staff say it will be at least tomorrow and possibly Wednesday before he even starts to wake up.
When we arrived we were both quite shocked at how swollen he was. This is quite normal apparently for anyone who is on a ventilator because they hold fluid and it is this fluid build up which causes the bloated look. Bless him, he looked like he had gone a few rounds with Amir Khan. They have given him some medication that will allow him to wee the extra fluid out and he should start looking better pretty soon.
In fact once he starts coming out of the coma properly, he will be able to come off of the ventilator and with the pipe removed, he should start looking better completely. Bless him, at the moment he looks Adam Ant because he has sticky plaster across his face and nose. I half expect him to start singing 'Prince Charming'!
We have asked that nobody comes to see him while he looks the way he does because he really does look bad but all of the pipes, tubes and tapes are there to benefit him so we keep trying to see past them. It is not a picture that you would want, so just think of him as he is in the pictures.
Talking of fluid retention etc, Patrick had to have a chest x-ray this morning as there is a risk of infection when on the ventilator. Apparently the normal secretions that we all have are not passed through the system as normal and so this has to be checked regularly. He also had these secretions sucked out using a thin tube attached to a hoover type thing. While this was being used the nurses had to rub his chest quite vigorously to loosen the fluidy stuff up. (You can see I am very technically trained what with the grasp I have on the terminology!!)
It was a nice day today in so far as Gemma was allowed to give Paddy a bed bath. It is funny how much pleasure we got from being able to touch him and actually do something for him. She was also able to dress him in one of his own baby grows too so he looked lovely by the time she had finished and it took the nasty edge off the way he looked. Then came the absolute magic - we were allowed to give him another cuddle and Gem was allowed to sit with him laying on her lap instead of him just being in his bed. The wires made it awkward but she was over the moon. Funny how we can take such simple things for granted but it was magic. We had been allowed to cuddle him a bit yesterday but today was even better.
The nursing staff in the paediatric intensive care unit are just fantastic people. The main girl who is looking after Paddy is Fran and she is a hero to us both. She is expecting her own baby in October and she treats Patrick like I imagine she will treat her own. She talks to him as if he is awake (which we do too) but she really does treat him so sweetly and us too. She can read us now and can see if we don't understand things etc and will go and get a Doctor to explain again if we need it. Little things mostly but she really makes a difference. We feel very comfortable leaving him in her care.
We found out today that this intensive care unit is the Regional Paediatric Intensive care unit. They have 9 beds that serve the whole of the region including the channel Isles! Can you believe that? 9 Beds for 12 hospitals to make use of! National Health - safe in our hands? Yeah righty ho. I hope I misheard the cost but it was something crazy like 5 grand per bed per day. I will check that and let you know but I am sure that is what we were told today.
Well on to tomorrow now. We hope to have the results of the culture tests that were done on Patrick's lumbar puncture samples tomorrow. That should confirm or rule out any infection that might be causing the fits but again, we are not getting our hopes too high. The Consultant Neurologist is of the opinion that they will prove clear so we are following her lead on that.
What we are hoping strongly for tomorrow is that Patrick will be awake enough for an EEG to be carried out. We are hoping that although he will be awake, the fits will be stopped now that the cycle has been broken. Unfortunately the fits will probably only be stopped temporarily so they will need to move quickly to get a steady reading of his brain activity. This will then be compared to the previous EEG report so that the neurologist can determine where the problem lies. We are not even considering what will have to be done if they miss the opportunity because the whole process of rest etc will have to be repeated. We assume. So keep your fingers crossed for a good result for Paddy please.
We have taken the advice of Fran, the nurse and have come home tonight as there is nothing we can do while we are up there and Patrick is unaware of our being there or not. Neither of us is happy leaving him but we have the other kids to consider and they need some level of normality so we are being with them when we can. It is hard having to change hats from sad parents while with Patrick and then happy with Isaac and supportive with Ash and Bill but what it takes is what is needed and so we do. Luckily we have you all for our support network and you probably will never know just how much that means and how much it helps us, so thanks yet again.
We have made the nursing team promise us that if there is any sign of Patrick waking (and there will be plenty of warning) they must phone us regardless of the time. Overnight it will only take me 20 minutes to get there so one or both of us can be there when he wakes.
Any hoooo, it is getting late now and I am on the early shift tomorrow so I am going to sign off now. This is the second flipping time I have written this post. I wrote a much nicer and more informative version a little while ago and my darn laptop decided to crash. You guessed it - I didn't save any of it! Nice one dumb dumb. Please keep your fingers crossed for Paddy tomorrow and I will let you know how it goes. Keep up the good thoughts and prayers, I have no doubt it all helps.
Thanks for taking the time to read today's post and thanks for all the texts, e-mails and voicemail messages too. You understand that we can't reply to them all as we have the phones off in the Hospital but then again, that's the point of this blog. Thank God for the Internet.
Love to everyone from
Martin, Gemma, Ash, Bill and Isaac.
Nighty night Patrick love you lots
Mummy, Daddy and your big Bros
xxxxxxxxxxxxxxxxxx
Sunday 6 May 2007
Yesterday... all my troubles seemed so far away.....
Welcome to Patrick's blog. As you know by now, Patrick is in hospital after suffering fits on the morning of Sunday 29th April. What some of you don't know is how we got to where we are at now so here is how it all started...........
On the Sunday morning, Patrick woke as normal at 6 a.m. and had a good feed on his bottle. At 6.30 he had his first 'event' and his body became very stiff, his head turned to the left and his eyes rolled up and to the left. His hands started to flex and relax very quickly too. This whole episode lasted only 30 seconds and he then returned to normal and was his happy chuckly self.
Nothing more happened for about an hour and Gemma thought it was a windy movement. When it happened again a little bit later, she mentioned it to me and we made sure that he wasn't too hot in case it was a febrile seizure. We both then saw the next one and called the NHS Direct emergency line. They asked the senior nurse at Poole General Paediatric Unit to phone us. While she was on the phone to us, he had another seizure and I was able to describe it as it happened. She then told us to hang up and call an ambulance.
The ambulance duly arrived and took Patrick and Gemma off to Poole Hospital. The ambulance staff hadn't seen one of his fits and said they thought it was probably febrile seizures even though he didn't seem to have a temperature. He had another seizure in the ambulance and they pulled over to ensure he was ok. At that point, the ambulance staff agreed it was not the heat related seizure and stuck the lights and sirens on and got him to Poole very quickly.
Over the next few days Patrick's situation deteriorated and he had to have an ultra sound scan of his brain and an MRI scan of his brain. Both of these showed no obvious abnormalities or defects and so the saga continued. The doctors then had an EEG carried out and this showed that he was actually in a state of seizure continuously (Status Epilepticus) which came as a shock to us as we thought he was only 'fitting' every now and then.
A further couple of EEG exams followed over the next couple of days and after much thought, Patrick was transferred to Southampton Gen. Hosp. on the Tuesday night.
Patrick arrived at Southampton Gen at approx 8.pm and was taken straight to the Paediatric Intensive Care Unit. He was there for a couple of hours and after being examined it was decided as he was showing no other signs of illness he could be cared for on a normal ward. As the night progressed he seemed to be settled and comfortable but unfortunately the following day (Weds) he got a lot worse and from 9am - 7:30pm he was having violent seizures that were very visible, only stopping for a few minutes now and then so his body could rest. Eventually after much medication he did settle down. It was decided on Thursday that he needed a higher level of care and was moved to the High Dependency Unit instead. The nurses continued to try different anti-convulsants to stop the seizures but unfortunately although the thrashing about subsided and he seemed a bit more comfortable, the EEG scan still showed the same brain pattern and we were told that the medication was only sedating him and not stopping the fits. Friday afternoon we were told he had to be taken back down to intensive care for a more complicated treatment. Basically, as Patrick's seizures weren't subsiding with the anti-convulsants and this had been going on for days, they had to give his poor body and brain a break and try and break the cycle of fits. To do this they have given him a high dose of anaesthetic to induce a coma. We are assured that this is the safest thing for them to do and is standard procedure. It was recommended that he be kept in a coma for 48hrs.
So, that is where we are now, our poor baby has had a much needed rest and the hope is that when they start to withdraw the anaesthetic tomorrow, his seizures will have stopped, albeit temporarily and they will be able to do another EEG scan. We hope that will show what his normal brain pattern looks like and they can then compare the scans and hopefully isolate where the problems lie. We don't know what tomorrow will bring, we have been told it may take a day or so for the effects of the anaesthetic to wear off so he will still be sedated but they will be able to start running the tests they need to.
This has been written by both of us and we hope that one of us will do a nightly update as we continue through the rest of Patrick's illness. Many of you have been texting, phoning and e-mailing with support and without exception asking if there is anything you can do to help. We all want to say a big thank you to all of you because without your continued support we would find it so much harder to cope with. I am not going to single out individuals because I know that each and everyone would do so much if you were near enough so thanks to everyone. You all know that we are not full on religious people although we have our own private faith but we have been overwhelmed by the amount of prayers that are being said for Patrick at the moment and the amount of love we have been shown.
Martin, Gemma, Ashley, Billy, and Isaac
"There is a comfort in the strength of love; 'Twill make a thing endurable, which else
would overset the brain, or break the heart." Wordsworth's Michael (line 448)
Good night Patrick, love from Mummy and Daddy
xxxxxxxxxxxxxxxxxxxx
On the Sunday morning, Patrick woke as normal at 6 a.m. and had a good feed on his bottle. At 6.30 he had his first 'event' and his body became very stiff, his head turned to the left and his eyes rolled up and to the left. His hands started to flex and relax very quickly too. This whole episode lasted only 30 seconds and he then returned to normal and was his happy chuckly self.
Nothing more happened for about an hour and Gemma thought it was a windy movement. When it happened again a little bit later, she mentioned it to me and we made sure that he wasn't too hot in case it was a febrile seizure. We both then saw the next one and called the NHS Direct emergency line. They asked the senior nurse at Poole General Paediatric Unit to phone us. While she was on the phone to us, he had another seizure and I was able to describe it as it happened. She then told us to hang up and call an ambulance.
The ambulance duly arrived and took Patrick and Gemma off to Poole Hospital. The ambulance staff hadn't seen one of his fits and said they thought it was probably febrile seizures even though he didn't seem to have a temperature. He had another seizure in the ambulance and they pulled over to ensure he was ok. At that point, the ambulance staff agreed it was not the heat related seizure and stuck the lights and sirens on and got him to Poole very quickly.
Over the next few days Patrick's situation deteriorated and he had to have an ultra sound scan of his brain and an MRI scan of his brain. Both of these showed no obvious abnormalities or defects and so the saga continued. The doctors then had an EEG carried out and this showed that he was actually in a state of seizure continuously (Status Epilepticus) which came as a shock to us as we thought he was only 'fitting' every now and then.
A further couple of EEG exams followed over the next couple of days and after much thought, Patrick was transferred to Southampton Gen. Hosp. on the Tuesday night.
Patrick arrived at Southampton Gen at approx 8.pm and was taken straight to the Paediatric Intensive Care Unit. He was there for a couple of hours and after being examined it was decided as he was showing no other signs of illness he could be cared for on a normal ward. As the night progressed he seemed to be settled and comfortable but unfortunately the following day (Weds) he got a lot worse and from 9am - 7:30pm he was having violent seizures that were very visible, only stopping for a few minutes now and then so his body could rest. Eventually after much medication he did settle down. It was decided on Thursday that he needed a higher level of care and was moved to the High Dependency Unit instead. The nurses continued to try different anti-convulsants to stop the seizures but unfortunately although the thrashing about subsided and he seemed a bit more comfortable, the EEG scan still showed the same brain pattern and we were told that the medication was only sedating him and not stopping the fits. Friday afternoon we were told he had to be taken back down to intensive care for a more complicated treatment. Basically, as Patrick's seizures weren't subsiding with the anti-convulsants and this had been going on for days, they had to give his poor body and brain a break and try and break the cycle of fits. To do this they have given him a high dose of anaesthetic to induce a coma. We are assured that this is the safest thing for them to do and is standard procedure. It was recommended that he be kept in a coma for 48hrs.
So, that is where we are now, our poor baby has had a much needed rest and the hope is that when they start to withdraw the anaesthetic tomorrow, his seizures will have stopped, albeit temporarily and they will be able to do another EEG scan. We hope that will show what his normal brain pattern looks like and they can then compare the scans and hopefully isolate where the problems lie. We don't know what tomorrow will bring, we have been told it may take a day or so for the effects of the anaesthetic to wear off so he will still be sedated but they will be able to start running the tests they need to.
This has been written by both of us and we hope that one of us will do a nightly update as we continue through the rest of Patrick's illness. Many of you have been texting, phoning and e-mailing with support and without exception asking if there is anything you can do to help. We all want to say a big thank you to all of you because without your continued support we would find it so much harder to cope with. I am not going to single out individuals because I know that each and everyone would do so much if you were near enough so thanks to everyone. You all know that we are not full on religious people although we have our own private faith but we have been overwhelmed by the amount of prayers that are being said for Patrick at the moment and the amount of love we have been shown.
Martin, Gemma, Ashley, Billy, and Isaac
"There is a comfort in the strength of love; 'Twill make a thing endurable, which else
would overset the brain, or break the heart." Wordsworth's Michael (line 448)
Good night Patrick, love from Mummy and Daddy
xxxxxxxxxxxxxxxxxxxx
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