Thursday 24 December 2009
Monday 9 November 2009
ACT Christmas Cards
Just wanted to say thanks to Isobel for my ACT christmas cards that arrived this morning. They are lovely, so if anyone hasn't bought any yet, please order them now. You are supporting your charity and getting lovely cards that raise awareness among your friends into the bargain!
Julie
Julie
Monday 21 September 2009
Decannulation Problems
Helen, I tried to publish a reply comment to your post below but for some reason my pc won't let me. It sounds like we have both been through very similar things and I'm really sorry to hear that Luis has had to have his trachy re-inserted.
We started capping with Nadia August bank holiday and after 2 days they took the trachy out despite Nadia showing profound recession and a very obvious stridor, which ENT refused to acknowledge, despite everyone around them being concerned. Despite endless requests from me to see her surgeon we only ever ended up being assessed by the rest of his team which I was not happy about but it seemed to fall on death ears.
Anyway 6 days after we were discharged Nadia came down with a pneumonia/chest infection in her right lung which turns out was the result of her aspirating post decannulation. After 6 days in our local hospital on ivs and oxygen we finally managed to get an appointment with the surgeon who took one look at her and requested she be admitted to St Mary's where he could keep an eye on her and blast her with adrenaline nebs. He confirmed that the pneumonia had been caused by her aspirating which was down to a problem in the airway.
After 5 days at St Mary's we were discharged but are due to see the surgeon again next week as things still haven't really improved. The stridor is still present and she now has an NG tube due to the fact she lost a kilo in weight since decannulation!
It's looking likely that we're going to have to have another MLB to find out what is going on and at best corrective surgery or at worst the trachy going back in.
It's interesting that Luis' vocal cord has stopped working again as this was the reason Nadia had the trachy put in..they moved in the wrong direction. At her last scope in July we were told they were moving properly again, however now I'm concerned that this isn't the case anymore. Either that or the trachy has caused a bit of collapse in her airway.
Anyway just wanted to let you know that I know exactly how you must be feeling and hope they manage to work out what is going on with Luis and you get rid of the tube for good!
S x
We started capping with Nadia August bank holiday and after 2 days they took the trachy out despite Nadia showing profound recession and a very obvious stridor, which ENT refused to acknowledge, despite everyone around them being concerned. Despite endless requests from me to see her surgeon we only ever ended up being assessed by the rest of his team which I was not happy about but it seemed to fall on death ears.
Anyway 6 days after we were discharged Nadia came down with a pneumonia/chest infection in her right lung which turns out was the result of her aspirating post decannulation. After 6 days in our local hospital on ivs and oxygen we finally managed to get an appointment with the surgeon who took one look at her and requested she be admitted to St Mary's where he could keep an eye on her and blast her with adrenaline nebs. He confirmed that the pneumonia had been caused by her aspirating which was down to a problem in the airway.
After 5 days at St Mary's we were discharged but are due to see the surgeon again next week as things still haven't really improved. The stridor is still present and she now has an NG tube due to the fact she lost a kilo in weight since decannulation!
It's looking likely that we're going to have to have another MLB to find out what is going on and at best corrective surgery or at worst the trachy going back in.
It's interesting that Luis' vocal cord has stopped working again as this was the reason Nadia had the trachy put in..they moved in the wrong direction. At her last scope in July we were told they were moving properly again, however now I'm concerned that this isn't the case anymore. Either that or the trachy has caused a bit of collapse in her airway.
Anyway just wanted to let you know that I know exactly how you must be feeling and hope they manage to work out what is going on with Luis and you get rid of the tube for good!
S x
Friday 11 September 2009
Luis update - it's all gone a bit pear shaped!
Oh well, we have a failed decannulation under our belt! After 5 days of being tube free Luis has had to have his trachy re-inserted as his left vocal cord is no longer moving and his airway is once again too narrow due to some angry inflammation - and the reason for each seems to be a mystery to all.
His breathing continued to be noisy so our very cautious ENT surgeon wanted to scope. She was expecting to find some grannulation tissue so was quite surprised at what she found. No answers as to why so far, they haven't come accross vocal cords that stop again after a recovery - does anyone else have any experience of this? So this combined with the swelling meant the safest and easiest option was to re-trach. The other option was to observe him on ITU for a week, but after a night on a very uncomfortable chair I'm quite glad they chose against that!
When we were sleeking over, we were using Opsite which Luis developed a nasty reaction to. An ENT Fellow (not come across a Fellow before!) said the inflammation could well have reached his airway and that may be our answer to the airway swelling. So there's a tip for anyone approaching decannulation, choose your sleek carefully and test the area around the neck for reactions beforehand. We've used Opsite many times before: on his face when he had his NG tube, on his hands for Amnitop and never encountered any problems before.
Hopefully that is the problem and we'll be able to try again soon. They have said they will scope again in 6-8wks so we will see. In the meantime poor old Luis faces a week in hospital before ENT do the first tube change. Luckily we don't have to spend 8 further weeks being trachy trained like we did the first time round!
Luis is well though, it wasn't gone long enough for him to get used to it but it's very odd to be back in near silence - we soon got used to the noise!
Thanks to everyone for your advice and support.
Love Helen x
His breathing continued to be noisy so our very cautious ENT surgeon wanted to scope. She was expecting to find some grannulation tissue so was quite surprised at what she found. No answers as to why so far, they haven't come accross vocal cords that stop again after a recovery - does anyone else have any experience of this? So this combined with the swelling meant the safest and easiest option was to re-trach. The other option was to observe him on ITU for a week, but after a night on a very uncomfortable chair I'm quite glad they chose against that!
When we were sleeking over, we were using Opsite which Luis developed a nasty reaction to. An ENT Fellow (not come across a Fellow before!) said the inflammation could well have reached his airway and that may be our answer to the airway swelling. So there's a tip for anyone approaching decannulation, choose your sleek carefully and test the area around the neck for reactions beforehand. We've used Opsite many times before: on his face when he had his NG tube, on his hands for Amnitop and never encountered any problems before.
Hopefully that is the problem and we'll be able to try again soon. They have said they will scope again in 6-8wks so we will see. In the meantime poor old Luis faces a week in hospital before ENT do the first tube change. Luckily we don't have to spend 8 further weeks being trachy trained like we did the first time round!
Luis is well though, it wasn't gone long enough for him to get used to it but it's very odd to be back in near silence - we soon got used to the noise!
Thanks to everyone for your advice and support.
Love Helen x
Sunday 2 August 2009
Luis is ready for decannulation - help!
Luis has had his trachy since he was a month old. He had heart surgery which left his vocal cords paralysed and had a grade 3 stenosis due to repeated intubation. We didn't know if his vocal cords we're permanently damaged or just bruised but over his 2 years with his trachy things looked like they were moving, albeit slowly, in the right direction so we've just got on with life with the hope that one distant day he would be trachy-free.
He went in for a LBT on Thursday, just a general review so we didn't get our hopes up but we were flabbergasted when his ENT surgeon announced he could be decannulated, not least when they said they'd start the process straight away. OMG!!!
First stage was to downsize his tube which he coped with fine but we have really hit a wall with the next stage which is sleeking over the tube. On the one hand Luis has only really ever known breathing via the trachy so the sensation of using his upper airway is completely alien to him, but on the other hand he is 2 and terrible - he really doesn't like being messed with and will fight against the silliest of things like having his nappy changed and he is absolutely refusing to let anyone tape over his tube.
It is so frustrating. We can occlude at night, when he is completely zonked out and he is fine, sats 100%, all going brilliantly. But the minute he wakes and realises that the sensation is different he pulls off the tape and we then can't re-tape while he's awake.
We've been at this for 3 days now, and the hospital are starting to talk about sending us home and the trial not working and I'm just desperate as I know he can do it. Medically everything is okay, it's a psychological, behavioural thing more than anything else, I think. I know he has to re-learn how to breathe but we also need to get round his stubborn 2yr old mind.
We've been playing around with his swedish noses during the day, covering them with clear tape to increase the resistance and that goes well as he can't see the tape so doesn't think there is anything different about them, but he is still relying on the leak around the tube rather that using his upper airway.
Does anyone have any experience with this or any advice they could offer, we really are struggling. This is something we thought would happen one day but not in the near future, so we hadn't in any way prepared ourselves or looked into the process and how best to prepare Luis.
This is an amazing situation to find ourselves in and I just really want to make it work - I can't even imagine the impact it would have on our lives to be trachy free, I guess you all know what I mean.
Love Helen (& Luis x)
PS - Sorry for the very rambling blog, it's been a long few days...
He went in for a LBT on Thursday, just a general review so we didn't get our hopes up but we were flabbergasted when his ENT surgeon announced he could be decannulated, not least when they said they'd start the process straight away. OMG!!!
First stage was to downsize his tube which he coped with fine but we have really hit a wall with the next stage which is sleeking over the tube. On the one hand Luis has only really ever known breathing via the trachy so the sensation of using his upper airway is completely alien to him, but on the other hand he is 2 and terrible - he really doesn't like being messed with and will fight against the silliest of things like having his nappy changed and he is absolutely refusing to let anyone tape over his tube.
It is so frustrating. We can occlude at night, when he is completely zonked out and he is fine, sats 100%, all going brilliantly. But the minute he wakes and realises that the sensation is different he pulls off the tape and we then can't re-tape while he's awake.
We've been at this for 3 days now, and the hospital are starting to talk about sending us home and the trial not working and I'm just desperate as I know he can do it. Medically everything is okay, it's a psychological, behavioural thing more than anything else, I think. I know he has to re-learn how to breathe but we also need to get round his stubborn 2yr old mind.
We've been playing around with his swedish noses during the day, covering them with clear tape to increase the resistance and that goes well as he can't see the tape so doesn't think there is anything different about them, but he is still relying on the leak around the tube rather that using his upper airway.
Does anyone have any experience with this or any advice they could offer, we really are struggling. This is something we thought would happen one day but not in the near future, so we hadn't in any way prepared ourselves or looked into the process and how best to prepare Luis.
This is an amazing situation to find ourselves in and I just really want to make it work - I can't even imagine the impact it would have on our lives to be trachy free, I guess you all know what I mean.
Love Helen (& Luis x)
PS - Sorry for the very rambling blog, it's been a long few days...
Thursday 25 June 2009
AAC
Wondering if anyone has had any luck obtaining a communication aid for their child. although Sam is decannulated, he is still unable to speak and it is likely to be a long time before we get anywhere with that. we have the opportunity to trial a speech device (liberator) for Sam for a couple of weeks. Has anyone found anything that works well for their children. Sam is cognitively aware and extremely literate so needs something pretty high tech.
another question is funding - the one we are trialling is almost £3500! It's a lot of money, which we cannot afford - is there a good charity out there who would help. we dont qualify for the family fund.
TIA
another question is funding - the one we are trialling is almost £3500! It's a lot of money, which we cannot afford - is there a good charity out there who would help. we dont qualify for the family fund.
TIA
Saturday 30 May 2009
Good news!
Just wanted to let everyone know that Sam was successfully decannulated this morning. He was capped for 24 hours then took the tube out himself this morning - he just wanted his speaking valve back! At the moment he has the speaking valve taped over his stoma. He still appears a little confused as he has lived most of his life with a trachy, but no problems with breathing or oxygen saturations. the doctors just want to keep him overnight for monitoring then he should hopefully be discharged tomorrow morning. I can't believe this day has come after we hoped and prayed for it so much - it's not quite sunk in yet and I have to admit to being pretty apprehensive when they decided to take the trachy out this morning, I felt pretty sick. But everything seems to be fine - I'm looking forward to being able to leave all those bags at home!! Just imagine, only having to take a book bag and a lunch box to school every day ;)
Friday 22 May 2009
Practical advice on getting out and about...
Now that the weather is improving and I am finally a full time mummy I would like to get out and about with Luis more but still find it a struggle so am interested to hear how other parents manage it.
I have a Laerdal suction machine which is like carring a small typewriter around (!), a bag that contains his emergency kit, catheters, gloves and humidivents, a nappy bag with all the usual toddler kit (kept to a bare minimum) and a nearly 2 year old who is not terrible but is definitely trying, plus the obligatory toy that Luis can't leave the house without bringing.
The easist thing is when Luis will sit nicely in his pushchair as everything fits perfectly on it, but he won't stay in there for long. He then won't walk for long either but won't get back in the pushchair which is when I end up carrying him and pushing a precarious pushchair that tips without him sitting in it.
So, I am all ears to hear about how others manage (or don't!) to get out and see if any parents of older kids have any top tips. Does everyone look like they are leaving home when they are just popping to the shops?!
Looking forward to hearing your ideas.
Helen x
I have a Laerdal suction machine which is like carring a small typewriter around (!), a bag that contains his emergency kit, catheters, gloves and humidivents, a nappy bag with all the usual toddler kit (kept to a bare minimum) and a nearly 2 year old who is not terrible but is definitely trying, plus the obligatory toy that Luis can't leave the house without bringing.
The easist thing is when Luis will sit nicely in his pushchair as everything fits perfectly on it, but he won't stay in there for long. He then won't walk for long either but won't get back in the pushchair which is when I end up carrying him and pushing a precarious pushchair that tips without him sitting in it.
So, I am all ears to hear about how others manage (or don't!) to get out and see if any parents of older kids have any top tips. Does everyone look like they are leaving home when they are just popping to the shops?!
Looking forward to hearing your ideas.
Helen x
Saturday 16 May 2009
Bronchoscopy and Chest Infections/Increased Secretions
Hi there
Has anyone noticed that after a Bronchoscopy that there child gets a chest infection almost immediatley or several increased secretions? Billy has a scope in September and as soon as he came out of theatre he had full blown chest infection resulting in spending almost 2 weeks in hospital requiring oxygen. I just put it down to being a coincidence until yesterday....he had enough scope and as soon as he came back from theatre his secretions were continuous. I hadn't suctioned all day, he went into theatre at 3 pm but when he came out it was every couple of minutes. He has been the same today, although he doesn't appear to be ill i.e. no temperature etc but lots of very green secretions. I've tried nebbing him but to no avail.
Many thanks
Denise
Has anyone noticed that after a Bronchoscopy that there child gets a chest infection almost immediatley or several increased secretions? Billy has a scope in September and as soon as he came out of theatre he had full blown chest infection resulting in spending almost 2 weeks in hospital requiring oxygen. I just put it down to being a coincidence until yesterday....he had enough scope and as soon as he came back from theatre his secretions were continuous. I hadn't suctioned all day, he went into theatre at 3 pm but when he came out it was every couple of minutes. He has been the same today, although he doesn't appear to be ill i.e. no temperature etc but lots of very green secretions. I've tried nebbing him but to no avail.
Many thanks
Denise
AGM and Family Day
I would just like to express my thanks to the committee for a wonderful day today. The speakers were highly informative and seemed to genuinely care about the children in their care. Thanks also to the ladies who provided the excellent buffet - I couldn't squeeze anymore in, though I would've liked too (and James had 3 pieces of cake!) My final thanks go to the ladies from the Diana team who cared for our children - I'm sure they will sleep well tonight after running after Sam!
Julie
Julie
Saturday 2 May 2009
Respite
Hi - I know it seems to vary across the country but I was wondering whether anyone could offer advice on how to go about getting some respite? I've asked my GP, Health Visitor and CCN but no-one seems to know anything about it - my CCN suggested Acorns of all places, I almost said 'he's only got a trachy'! Do some areas have people to help during the night? Luis is almost 2 and we could really do with a good nights sleep! To be honest I'm not sure if I could let someone else look after him but it would be nice to know what's out there.
Many thanks - Helen
PS I never got round to saying a huge thank you to everyone who offered advice on Luis' feeding problems last November. We tried all the tricks you suggested and as of this week he now has a gastrostomy which will hopefully see a change to his oral aversion. Thanks again x
Many thanks - Helen
PS I never got round to saying a huge thank you to everyone who offered advice on Luis' feeding problems last November. We tried all the tricks you suggested and as of this week he now has a gastrostomy which will hopefully see a change to his oral aversion. Thanks again x
Thursday 2 April 2009
Research group
I attended a research group this week into children's community nursing services. It is a joint venture being run by the University of Central Lancashire and University of Bristol. They invited parents (and some of the children they cared for) to attend and give their views about what is good and bad about the service in their area. These groups are being held across the country and most pct's are taking part. the aim is to provide a framework for community children's nursing services - and other NHS services. If it works, it should mean an end to the postcode lottery as all trusts will provided the same care. I mean, if one county can manage to provide a quality service to it's patients, why can't others! I'll inform you when I get the results of the study.
Julie
Tuesday 31 March 2009
Taxi Vouchers
Hi,
Does anyone know whether you can apply for the taxi voucher scheme if you have a child under the age of 1 with a trachy? I know that you can apply for a blue badge due to the heavy equipment that you need to carry around with you, however does the same reasoning apply for the taxi voucher scheme?
Thanks
Sarah x
Does anyone know whether you can apply for the taxi voucher scheme if you have a child under the age of 1 with a trachy? I know that you can apply for a blue badge due to the heavy equipment that you need to carry around with you, however does the same reasoning apply for the taxi voucher scheme?
Thanks
Sarah x
Saturday 28 March 2009
Increased Secretions
Can anyone advise if they noticed a dramatic increase in secretions when their child was teething? Billy is really drolling with his teeth and the hyocine patch doesn't make a scrap of difference. The amount of suction he is having has increased dramatically or at least I think it is down to his teething? I was wondering if anyone who uses the trachphone noses has noticed that they have caused more secretions? Billy does seem to prefer them as they are much smaller for a little toddler with a short neck! Just not sure if they are doing him any good. He requires suctioning about every 10-15 minutes during the day but is really really dry at night. If his nose comes off at night he gets sticky plugs and he has had to have a few emergency tube changes. When he isn't teething suction is normally a couple of times an hour.
Many thanks
Denise
Many thanks
Denise
Thursday 12 March 2009
Moving to North Hertfordshire (Hitchin)
Hello everyone
We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:
Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.
What are social services like in the area?
We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.
Many thanks
Denise
We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:
Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.
What are social services like in the area?
We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.
Many thanks
Denise
Wednesday 11 February 2009
How many catheters do you use a week?
Hi,
I'm having a really big fight with my community nursing team at the moment about the number of catheters we are using. Over Christmas and during January we were using about 200 catheters a week. However she seems to have had a series of colds (and started to teeth) since then and as a result we've had to increase suctioning and the last two weeks have been going through about 300 catheters a week.
The Community Nursing team have decided that we are using too many and have started to ration the boxes of catheters and also threatened to admit her to observe why she is needing to be suctioned so much.
At the moment they're giving us 2 boxes at a time (and expecting us to go to hospital to pick them up) and I am getting sooo stressed out about it all.
Would love to know how many catheters everyone went through 4 months after trach was inserted, and how many you go through when your children are sick.
I really do feel that we are leaving it as long as possible. She only has a size 3 neo-natal tube so I can't run the risk of the tube blocking off! They've also told me not to leave secretions rattling as this makes her work harder to breathe and then prevents her from putting on weight.
I just can't win!
S x
I'm having a really big fight with my community nursing team at the moment about the number of catheters we are using. Over Christmas and during January we were using about 200 catheters a week. However she seems to have had a series of colds (and started to teeth) since then and as a result we've had to increase suctioning and the last two weeks have been going through about 300 catheters a week.
The Community Nursing team have decided that we are using too many and have started to ration the boxes of catheters and also threatened to admit her to observe why she is needing to be suctioned so much.
At the moment they're giving us 2 boxes at a time (and expecting us to go to hospital to pick them up) and I am getting sooo stressed out about it all.
Would love to know how many catheters everyone went through 4 months after trach was inserted, and how many you go through when your children are sick.
I really do feel that we are leaving it as long as possible. She only has a size 3 neo-natal tube so I can't run the risk of the tube blocking off! They've also told me not to leave secretions rattling as this makes her work harder to breathe and then prevents her from putting on weight.
I just can't win!
S x
Monday 9 February 2009
Travel insurance
We have booked a family trip to France in August. Just a short hop across the channel - don't want to be too far from the ports in case of emergency. It is the first time we have taken Sam abroad since he had his trachy. Can anyone advise on travel insurance companies that will insure Sam for the trip. I've been looking through my old ACT mags and I know there was an article on this a couple of years ago, but haven't managed to find it. Any advice would be most welcome, thanks.
Julie
ps Incidentally, if anyone is travelling to France via Eurotunnel and their child requires oxygen, I have confirmed with eurotunnel that they are happy for oxygen for the journey to be transported as long as it is declared at check in. Just for info :)
Julie
ps Incidentally, if anyone is travelling to France via Eurotunnel and their child requires oxygen, I have confirmed with eurotunnel that they are happy for oxygen for the journey to be transported as long as it is declared at check in. Just for info :)
Sunday 25 January 2009
FAMILY FUND
I would like to suggest that our members take a look at the Family Fund website and the Family Fund extra pages.
In the present financial climate you may want to apply for some money towards a family holiday with your trachy child, or perhaps the washing machine has just decided to give up the ghost and there is no money for another one, and washing machines are an essential when you are home nursing.
Take a look. Give it a try. You will find they are very helpful and very accomodating.
I will be putting a full article about the Fund in the next newsletter, but thought some people may like to use the benefits before then.
THERE IS ALSO AN ADDITIONAL DISCOUNT SCHEME FOR STORES LIKE ARGOS ETC.
this is on Family Fund extra.
Best wishes
June.
In the present financial climate you may want to apply for some money towards a family holiday with your trachy child, or perhaps the washing machine has just decided to give up the ghost and there is no money for another one, and washing machines are an essential when you are home nursing.
Take a look. Give it a try. You will find they are very helpful and very accomodating.
I will be putting a full article about the Fund in the next newsletter, but thought some people may like to use the benefits before then.
THERE IS ALSO AN ADDITIONAL DISCOUNT SCHEME FOR STORES LIKE ARGOS ETC.
this is on Family Fund extra.
Best wishes
June.
Weight gain and feeding advice
Hello everyone,
I'm afraid that I'm after more of your fantastic advice. My lo is struggling to put on weight. At 7 months (4mths corrected) she's still only 4.5kg. Although she is steadily gaining weight (120-150g per week) and developing well, with lots of energy, we saw the consultant on Friday and she said it wasn't enough and she wants to give Nadia an NG tube.
She's currently on Infatrini formula milk but is showing signs of wanting to be weaned so I'm seeing a dietican in the next couple of weeks to get advice on how to go about this. I'm hoping that once she starts to take solids in addition to her milk she might start to put on more weight. This really is my last chance. If she is still failing to put on 40g a day the NG tube will definitely be forced upon us.
I know that a lot of trachy babies/children have NG tubes but have heard a lot of negative things about it creating an aversion to taking anything orally, even if the NG tube is just used for top up only.
Has anyone out there managed to avoid the NG tube, despite their lo failing to put on weight quickly? If so would love to hear how you did it!!
Thanks
Sarah x
I'm afraid that I'm after more of your fantastic advice. My lo is struggling to put on weight. At 7 months (4mths corrected) she's still only 4.5kg. Although she is steadily gaining weight (120-150g per week) and developing well, with lots of energy, we saw the consultant on Friday and she said it wasn't enough and she wants to give Nadia an NG tube.
She's currently on Infatrini formula milk but is showing signs of wanting to be weaned so I'm seeing a dietican in the next couple of weeks to get advice on how to go about this. I'm hoping that once she starts to take solids in addition to her milk she might start to put on more weight. This really is my last chance. If she is still failing to put on 40g a day the NG tube will definitely be forced upon us.
I know that a lot of trachy babies/children have NG tubes but have heard a lot of negative things about it creating an aversion to taking anything orally, even if the NG tube is just used for top up only.
Has anyone out there managed to avoid the NG tube, despite their lo failing to put on weight quickly? If so would love to hear how you did it!!
Thanks
Sarah x
Wednesday 21 January 2009
Humidification
Hi there,
Am looking for advice in terms of room humidifiers. My 7 month old has had her trachy since October and evern since she has come home she seems to suffer from really thick secretions and is permanently wheezy. I use a saline neb on a regular basis but I'm convinced it is the flat that we live in as whenever we go elsewhere she is sooo much better.
I bought a nursery air ioniser a couple of weeks ago but not convinced that it is doing anything so wondered if anyone could make a recommendation.
Hope you can help
Sarah
Am looking for advice in terms of room humidifiers. My 7 month old has had her trachy since October and evern since she has come home she seems to suffer from really thick secretions and is permanently wheezy. I use a saline neb on a regular basis but I'm convinced it is the flat that we live in as whenever we go elsewhere she is sooo much better.
I bought a nursery air ioniser a couple of weeks ago but not convinced that it is doing anything so wondered if anyone could make a recommendation.
Hope you can help
Sarah
Monday 19 January 2009
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