This is the update I promised months ago!
It's quite honestly been a bad year this year, firstly with my own health, and having had viral meningitis which wiped me out for months, and I still get the occasional pain in my neck/back of my head which knock me out for 24/48 hours. I've also developed some other issues that my GP has decided is stress! So I'm now on reflux med's too, although mine are a stronger dosage than Michael's!!
Since I last posted Michael had his tonsils and adenoids removed at GOS, our over-night stint in hospital turned into a 4 day extravaganza!! Floppy airways tend to close off when there is nothing to support them, SAT's levels through the floor and 02 requirement through the roof!! This was followed a week later by a re-admission for bleeding; (We we're the less than 1% they mentioned when the discussed the possibility of a re-bleed.)
He's still in 02 at night, still has those big dark patches around his eyes and still has a runny nose - all the things we thought would go once his T&A's had been removed!
We've had another sleep study done which showed that Michael still has Obstructive Sleep Apnoea, admittedly it's better than it was before the T&A's were removed , but it's still there.
We also had a repeat videofluroscopy done - to see if removing the T&A's had improved things in the swallow department. I was quite optimistic, at the time when the SALT told me things looked good - but then the report came through which showed basically nothing has changed, there's no improvement.
We've also been through a stage of removing the reflux medication because he should have "grown out" of it now - and we've had to put him back on, so we have an appointment this month with the Gastro, be interesting to see what she says!
Back to see the Resp in December - be interesting to see what he has to say too, as it's our first appointment since the results of the sleep study came back!
Wednesday, November 07, 2007
Thursday, July 12, 2007
Things have
been a little chaotic around here recently, and this is one of those things that slipped! As has Michael's website http://www.michaelrigaud.co.uk/
I am hoping to spend some time next week updating both here and the website - please come back soon
I am hoping to spend some time next week updating both here and the website - please come back soon
Tuesday, March 20, 2007
So much for
My New Year's Resolution that I would post regularly on here!!
Shortly after I made that post back in January I came down with some kind of virus, believe me when I say it has taken me this long to get over it!! Someone I know mentioned the words man-flu!! My Doc wanted to know if I'd been a car accident because he thought I had whiplash injuries to my neck. I hadn't....but I did do an awful lot of sleeping!
Now I am back on my feet, I am planing on updating things around here more frequently. We have a busy couple of months coming up with sleep studies and surgery!
So watch this space!
Shortly after I made that post back in January I came down with some kind of virus, believe me when I say it has taken me this long to get over it!! Someone I know mentioned the words man-flu!! My Doc wanted to know if I'd been a car accident because he thought I had whiplash injuries to my neck. I hadn't....but I did do an awful lot of sleeping!
Now I am back on my feet, I am planing on updating things around here more frequently. We have a busy couple of months coming up with sleep studies and surgery!
So watch this space!
Saturday, January 13, 2007
Update 3 - Lung issues
When I last posted here, Michael had just gone back into oxygen at night, and I was really struggling to comprehend how at 6 he'd ended up back in 02. I may be wrong but most prem babies have long since lost their 02 concentrators by now; and I had really hoped that we would be waving that machine good-bye once and for all this year, but the overnight SAT's reading kinda put pay to that - at least for the time being.
So here we are some 8 months later and Michael is still in 02; and due back to see the ENT next week.
Following his surgery an over-night trace was repeated, which was excellent, Michael did really really well....the suggestion was to try him without 02 for two weeks to see how he went; can't say I was very happy at that suggestion, because I wasn't convinced that it was a proper reading done when Michael was imobile and just after surgery but what do I know? I may have been way off the mark in thinking that this perhaps wasn't/wouldn't be a "true" reading.
By the end of the second week off of 02 we had a child on our hands who couldn't walk far without tiring and was wanting to be picked up, whose energy levels had fallen, to the point where he was spending most of his time laying about. Fortunately it was school holidays so we could let him sleep in, in the mornings, and it didn't really matter that he was tired, and less than co-operative. So back into 02 he went...........
Since then I've taken Michael out of 02 for a week and monitored his SAT's levels, the night after he came off of 02 he did perfect 96%, and I was doing the happy dance, by the end of the week, he was spending longer and longer periods below 90 - with an increase in heart rate attached too.
We have been referred to one of the London Hospital's for a Polysomnography The hope is that this will show just what is going on whilst Michael is asleep, so we are currently waiting for our date to come around for this.
We were also referred for full lung function testing, this involved Michael sitting in a box, about the size of a telephone box, and breathing into a tube, amongst other things. We don't have the full results of this testing yet, and won't until our next visit with the Resp in February.
So I guess you could say our Lung issues are still ongoing!
So here we are some 8 months later and Michael is still in 02; and due back to see the ENT next week.
Following his surgery an over-night trace was repeated, which was excellent, Michael did really really well....the suggestion was to try him without 02 for two weeks to see how he went; can't say I was very happy at that suggestion, because I wasn't convinced that it was a proper reading done when Michael was imobile and just after surgery but what do I know? I may have been way off the mark in thinking that this perhaps wasn't/wouldn't be a "true" reading.
By the end of the second week off of 02 we had a child on our hands who couldn't walk far without tiring and was wanting to be picked up, whose energy levels had fallen, to the point where he was spending most of his time laying about. Fortunately it was school holidays so we could let him sleep in, in the mornings, and it didn't really matter that he was tired, and less than co-operative. So back into 02 he went...........
Since then I've taken Michael out of 02 for a week and monitored his SAT's levels, the night after he came off of 02 he did perfect 96%, and I was doing the happy dance, by the end of the week, he was spending longer and longer periods below 90 - with an increase in heart rate attached too.
We have been referred to one of the London Hospital's for a Polysomnography The hope is that this will show just what is going on whilst Michael is asleep, so we are currently waiting for our date to come around for this.
We were also referred for full lung function testing, this involved Michael sitting in a box, about the size of a telephone box, and breathing into a tube, amongst other things. We don't have the full results of this testing yet, and won't until our next visit with the Resp in February.
So I guess you could say our Lung issues are still ongoing!
Update 2 - Sleep issues
There was some talk of the possibility that Michael had Obstructive Sleep Apnoea
Arrangements were made for us to see an Ear Nose and Throat Surgeon, (ENT) at one of the Children's hospital's in London, we saw him in July.
This was another journey round the houses in the medical world, because we deal with different Health Authorities there is a question of funding, so we have to go from A via B to C, when for some things we are already at C, or we can go straight to Z. The best part is the Dr at A can't refer us directly to C, the hospital who know Michael so well and have been involved in his life since he was 11 weeks old - but they can to Z. Which is a completely different hospital that has had minimal imput since he was 4!
Anyway we saw the ENT, who recommended that Michael have his tonsils and his Adenoids removed, we received a date for Surgery in October.
Long story short, surgery; we were informed the day before, had been cancelled, when a letter dropped through the front door, this letter had been sent to everyone involved in Michael's care explaining why surgery had been cancelled a week earlier.
There seems to be some discussion going on as to what Michael's sleep issues actually are, the Resp is saying that he doesn't actually think Michael's sleep issue are actually anything to do with his tonsils and adenoids, but infact are down to lung issues. So the ENT wanted to review the results of the sleep study before surgery.
Although I was glad surgery had been put on hold, because if it's not necessary then there is no point in doing it, but I have to confess to being some-what peeved that everyone else had known a week before we were told that surgery had been cancelled.
Arrangements were made for us to see an Ear Nose and Throat Surgeon, (ENT) at one of the Children's hospital's in London, we saw him in July.
This was another journey round the houses in the medical world, because we deal with different Health Authorities there is a question of funding, so we have to go from A via B to C, when for some things we are already at C, or we can go straight to Z. The best part is the Dr at A can't refer us directly to C, the hospital who know Michael so well and have been involved in his life since he was 11 weeks old - but they can to Z. Which is a completely different hospital that has had minimal imput since he was 4!
Anyway we saw the ENT, who recommended that Michael have his tonsils and his Adenoids removed, we received a date for Surgery in October.
Long story short, surgery; we were informed the day before, had been cancelled, when a letter dropped through the front door, this letter had been sent to everyone involved in Michael's care explaining why surgery had been cancelled a week earlier.
There seems to be some discussion going on as to what Michael's sleep issues actually are, the Resp is saying that he doesn't actually think Michael's sleep issue are actually anything to do with his tonsils and adenoids, but infact are down to lung issues. So the ENT wanted to review the results of the sleep study before surgery.
Although I was glad surgery had been put on hold, because if it's not necessary then there is no point in doing it, but I have to confess to being some-what peeved that everyone else had known a week before we were told that surgery had been cancelled.
Update 1 - orchidopxy/hernia surgery
I promised an update on why I hadn't posted around here for a little while, and what had been happening in our lives since I last posted. It might be easier to post the updates in different posts, so this I guess will be update 1!
Things have been as always - chaotic. I guess part of my reason for not posting has been 'preemie burn-out' as I call it. When we entered the world of prematurity 7 years and 2 months ago, I remember quite clearly asking when all this would be over. What I didn't realise at the time and no-one saw fit to enlighten me was, that it will never be over. The Consequences of Michael's early birth will be with him, and with us for the rest of his and certainly our lives. Every so often the enormity of this hits home, and I get to the stage where I don't feel like I can deal with it. I withdraw and take time out to lick my wounds, re-charge my batteries before I feel like I am ready to take on the world again.
When Michael was 19 weeks old he had his bi-lateral inguinal hernia's repaired, at the time we were told to keep an eye out for his testicles, because there was every possibility that they would not appear by themselves.
When Michael was 2 and they still hadn't appeared I mentioned this to my GP and was told that it was alright, they'd come down by themselves. To be honest over the years they have become the least of our worries. Until this subject was brought up by another preemie parent, it then dawned - like a little light bulb!! That at 6 I still hadn't seen Michael's! After a heated discussion with the GP about why they were not likely to re-appear by themselves, we were referred back to see the Surgeon. Our appointment was in Jan 06, surgery happened the first week of the school holidays. The older Children went to Grandparents for the week, whilst DH and I spent our time at the hospital - lots of fun for them, but not much for Michael, bless him.
We were told to expect surgery to last roughly an hour, not sure if someone was being slightly ambitious, because 4 hours later we were being called to recovery, where the dreaded "word" 'PICU' was mentioned. Michael's testicles were buried in the scar tissue from his hernia repair, it appears the surgeon had to dig them out of the scar tissue and then sew them into place, also re-doing the hernia whist he was in there, so I think it may have turned out to be slightly more complicated than was first thought it would be.
Michael spent the night in hospital and was discharged the following day, he squeaked all the way home in pain, at every lump and bump in the road, and then spent 3 days sitting on the sofa before we finally managed to get him up and walking with support, gradually reducing the amount of support, until he was managing by himself.
He is very proud of his scars, and is quite happy to show them to anyone!
Things have been as always - chaotic. I guess part of my reason for not posting has been 'preemie burn-out' as I call it. When we entered the world of prematurity 7 years and 2 months ago, I remember quite clearly asking when all this would be over. What I didn't realise at the time and no-one saw fit to enlighten me was, that it will never be over. The Consequences of Michael's early birth will be with him, and with us for the rest of his and certainly our lives. Every so often the enormity of this hits home, and I get to the stage where I don't feel like I can deal with it. I withdraw and take time out to lick my wounds, re-charge my batteries before I feel like I am ready to take on the world again.
When Michael was 19 weeks old he had his bi-lateral inguinal hernia's repaired, at the time we were told to keep an eye out for his testicles, because there was every possibility that they would not appear by themselves.
When Michael was 2 and they still hadn't appeared I mentioned this to my GP and was told that it was alright, they'd come down by themselves. To be honest over the years they have become the least of our worries. Until this subject was brought up by another preemie parent, it then dawned - like a little light bulb!! That at 6 I still hadn't seen Michael's! After a heated discussion with the GP about why they were not likely to re-appear by themselves, we were referred back to see the Surgeon. Our appointment was in Jan 06, surgery happened the first week of the school holidays. The older Children went to Grandparents for the week, whilst DH and I spent our time at the hospital - lots of fun for them, but not much for Michael, bless him.
We were told to expect surgery to last roughly an hour, not sure if someone was being slightly ambitious, because 4 hours later we were being called to recovery, where the dreaded "word" 'PICU' was mentioned. Michael's testicles were buried in the scar tissue from his hernia repair, it appears the surgeon had to dig them out of the scar tissue and then sew them into place, also re-doing the hernia whist he was in there, so I think it may have turned out to be slightly more complicated than was first thought it would be.
Michael spent the night in hospital and was discharged the following day, he squeaked all the way home in pain, at every lump and bump in the road, and then spent 3 days sitting on the sofa before we finally managed to get him up and walking with support, gradually reducing the amount of support, until he was managing by himself.
He is very proud of his scars, and is quite happy to show them to anyone!
Neo Doctors Blogs
Someone sent me the link to these two Blogs, both written by Doctors who work in Neo-natal Units - there have been some interesting discussions going on within the comments, about outcomes for extremely premature infants.
I have to confess to having taken part in some of the discussions going on in there. I have no problem with saving premature babies at all, BUT I am a strong believer in parental involvement, Especially as a parent who discovered things about their child by accident, with my limited knowledge of prematurity, and my ignorance yes I honestly thought that it was just a case of putting him in an incubator and waiting for him to get fat, fit and healthy!!!
I have to be honest and say I also think that most of this information needs to be shared far earlier than when you find yourself hurtling towards the world of prematurity like a speeding train. The more who are aware of what can be a very real outcome of prematurity then maybe just maybe people will come to understand what the reality can be for many of us.
Unfortunately prematurity does not appear to be something we are ever going to be able to prevent, and younger and younger babies gestation wise are being saved. I've posted below the research done here in the UK the EpiCure study which has, been ongoing for the last 10 years, they have tried as far as is possible to keep track with all babies born between 22 & 25 week gestation; in order to see how these little ones develop.
The figures from the Epicure Study show the following levels of disability, within babies born at those gestation's:
Combining learning problems with physical difficulties allows us to calculate the overall disability rates which are shown below. Although disability affects a high proportion of surviving children, it is most important to remember that most of the children in the EPICure study were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns. This is something that is often not emphasised in discussions.
Percentage of Children with different degrees of disability
Gestation at Birth No Disability
23 weeks or less 24 weeks 25 weeks
12% 14% 24%
Mild Disability - e.g. low normal IQ scores, wears glasses & has a squint, mild hearing loss, minor neurological abnormalities
25% 36% 35%
Moderate Disability - e.g. moderate learning problems, cerebral palsy but walking, hearing aids, some vision deficit
38% 22% 22%
Severe Disability - e.g. severe learning problems, cerebral palsy & not walking, profound deafness, blindness
25% 29% 18%
Chance of Survival without Severe or Moderate (i.e. serious) disability
Chance at birth going onto survive without Serious Disability
22 weeks 23 weeks 24 weeks 25 weeks
1% 3% 9% 20%
Chance after Admission to NICU of going onto survive without serious disability
5% 6% 12% 24%
Note - these figures relate to the EPICure children born on 1995 and how they were at their 6 year follow up. The reason why the chance of surviving without disability goes up for babies once they are admitted to a Neonatal Unit is that this group has already excluded those babies born alive but who, sadly, died very quickly after birth.
It is obvious from the Trent Neonatal Survey information on the previous page that survival has improved – with this the chances of surviving without serious disability have improved a little but as yet we can't really tell you the exact figures as yet.
What happens if we use the Trent survival figures rather than the EPICure survival figures as they show some improvement?
If the disability rates have remained the same as in EPICure then the equivalent figures following admission for neonatal intensive care will be approximately:
23 weeks - 11%
25 weeks - 32%
I have to confess to having taken part in some of the discussions going on in there. I have no problem with saving premature babies at all, BUT I am a strong believer in parental involvement, Especially as a parent who discovered things about their child by accident, with my limited knowledge of prematurity, and my ignorance yes I honestly thought that it was just a case of putting him in an incubator and waiting for him to get fat, fit and healthy!!!
I have to be honest and say I also think that most of this information needs to be shared far earlier than when you find yourself hurtling towards the world of prematurity like a speeding train. The more who are aware of what can be a very real outcome of prematurity then maybe just maybe people will come to understand what the reality can be for many of us.
Unfortunately prematurity does not appear to be something we are ever going to be able to prevent, and younger and younger babies gestation wise are being saved. I've posted below the research done here in the UK the EpiCure study which has, been ongoing for the last 10 years, they have tried as far as is possible to keep track with all babies born between 22 & 25 week gestation; in order to see how these little ones develop.
The figures from the Epicure Study show the following levels of disability, within babies born at those gestation's:
Combining learning problems with physical difficulties allows us to calculate the overall disability rates which are shown below. Although disability affects a high proportion of surviving children, it is most important to remember that most of the children in the EPICure study were doing reasonably well at school, keeping up in the classroom and had normal behaviour patterns. This is something that is often not emphasised in discussions.
Percentage of Children with different degrees of disability
Gestation at Birth No Disability
23 weeks or less 24 weeks 25 weeks
12% 14% 24%
Mild Disability - e.g. low normal IQ scores, wears glasses & has a squint, mild hearing loss, minor neurological abnormalities
25% 36% 35%
Moderate Disability - e.g. moderate learning problems, cerebral palsy but walking, hearing aids, some vision deficit
38% 22% 22%
Severe Disability - e.g. severe learning problems, cerebral palsy & not walking, profound deafness, blindness
25% 29% 18%
Chance of Survival without Severe or Moderate (i.e. serious) disability
Chance at birth going onto survive without Serious Disability
22 weeks 23 weeks 24 weeks 25 weeks
1% 3% 9% 20%
Chance after Admission to NICU of going onto survive without serious disability
5% 6% 12% 24%
Note - these figures relate to the EPICure children born on 1995 and how they were at their 6 year follow up. The reason why the chance of surviving without disability goes up for babies once they are admitted to a Neonatal Unit is that this group has already excluded those babies born alive but who, sadly, died very quickly after birth.
It is obvious from the Trent Neonatal Survey information on the previous page that survival has improved – with this the chances of surviving without serious disability have improved a little but as yet we can't really tell you the exact figures as yet.
What happens if we use the Trent survival figures rather than the EPICure survival figures as they show some improvement?
If the disability rates have remained the same as in EPICure then the equivalent figures following admission for neonatal intensive care will be approximately:
Disability free survival
23 weeks - 11%
24 weeks - 20%
25 weeks - 32%
So it's been interesting to read some other parents points of views. Anyway if you want to check them out here they are!
Friday, January 12, 2007
Wow
Things have moved on around here, since the last time I posted, so I've spent this evening playing with the new format for the blog.
New Years resolution is to get back to posting on here regularly as I had been doing.
New Years resolution is to get back to posting on here regularly as I had been doing.
Sunday, January 07, 2007
It's been 8 months since
I last posted here, I am amazed that I've not posted in so long, I have no excuses other than those of life getting in the way.
Since I last posted things have moved on a pace, so please bare with my while I put something together to update on all our news!
Since I last posted things have moved on a pace, so please bare with my while I put something together to update on all our news!
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