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
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9 comments:
I had a similar problem when my son first had his trachy. But my local clinic provide the supplies - so I simply took him down and camped out for the day, until I was asked to leave, and had their understanding that i was not wasting the tubes - for goodness sakes, its as big an inconvenience for you to do the suctioning as it sif or the child.
Hi Sarah, glad you found our little uk based blog. As I said previously, Sam neede almost constant suctioning at first, I can't remember how many boxes we were going through, but we used a lot. Does the community nurse come to visit you? If so, count how many suctions you do during the duration of her visit then point it out to her. Also, do you get respite, we get it from the community nursing team and if they are providing you with respite they should know how often they are having to suction during the respite period. Unfortunately, supplies do tend to be a bit of a postcode lottery. If I had the correct size I would happily let you have some, but Sam has a much bigger trachy.
Julie x
That's crazy! How can you try to ration a supply that your childs life depends on?
Dominic also needed lots of suctioning at first. I can remember we had a regular order with our CCNs for two boxes of size seven catheters and two boxes of size eights a week - so 400. And they were delivered to our house by the CCN - no way should you be expected to collect them - you have enough to be dealing with.
If the CCN does want to observe, invite her to do this at your house (and get a bit of respite too!). Admissions to hospital in my opinion when the child is healthy carry an unnecessary risk of infection.
Hi,
The cn we have been allocated is supposed to come once a fortnight but since xmas has only really been around about 3 times. She's useless anyway as has never had a trachy patient before and can't answer any of my questions! She keeps refering me to her manager.
We don't get any form of respite from the CN team. They wouldn't even fill in their details on the DLA form - (and I quote..."I don't do forms!"), instead refering me to the GP.
All they seem to do is drip feed me my catheters and force me to come into the hospital to change Nadia's tube once a month. My husband and I do the change but they have to oversee and only then will she give me a replacement bivona!
Hmmm, Have you thought of asking for a new CCN? Actually ,is she really a CCN at all, if most of your contact is in hospital rather than in the home?
Why do you have to the trachy change in hospital? If you have been trained and assessed as competent you can do the change at home without supervision. Unless there is some reason I'm not aware of for this. It's scary at first, but something you really need to get used to as you just never know when a blocked trachy tube will occur.
Reading your post makes me realise how lucky we are with our CCN, she's been involved with us for other 3 years now, and I feel after my husband and I she knows Dominic's medical history the best. She's fabulous.
Good luck with everything.
Laura
PS - have to ask this, but you do have spare tubes don't you? And, more than one spare Bivona (they take a while to clean)???
Hi,I also had similar problems when my son first had his trache - he needed constant suctioning day and night especially when he had one of his numerous chest infections or colds. I hv had no support at all and at one stage had to cry and fight for new trache tapes and they kept running out of supplies!!! just stay very firm with them - I know how difficult it is especially when its not as if its a luxury item ur asking for its something our kids need day and daily - at minute im faced with the problem that they have actually ran out of trache tubes size 3.0 which he has been using for the past three years and hv now been told they r no longer making them and they may have to bring him in and put him up to next size tube!!!! Just wondering if anyone else have similar problems or is it again a post code thing i live in Northern Ireland?
There was a shortage of Shiley tubes about 3 years ago now (fire in the factory or something). When our local CCN team heard of this they started switching over all children with trachys over to Bivona. So, could you not just do that?
I can't believe they would stop making a trachy tube size - that just does not make sense. I'd contact the manufacturer/ medical rep if I was you just to double check. There will be other brands...and if not, you can get tubes custom made.
Out of interest, what brand is it?
Sarah1978,
Hi
We do have a couple of spare bivonas thank god. Going to do the tube change ourselves on Monday at home and not tell the CNN until I'm in hospital the next day seeing ENT.
We made an official complaint so don't think we are flavour of the month. I was at hospital yesterday as Nadia had to have a sweat test and there were 6 boxes of catheters with Nadia's name on outside the CNN office and no-one had even had the decency to let me know (this is also after they had told me that they'd have to place an emergency order and they wouldn't arrive till next week!) I don't believe anything they tell me anymore.
I also get the impression that they are really short staffed. Probably why they don't actually follow out their job description. It is a problem though as Nadia is constantly wheezy at the moment and I have no-one at hand to look at her and reassure me everything is ok. I take her to the docs, they listen to her chest and tell me it is clear but it can't be normal to be so wheezy can it?!
Jill - we used to use shiley size 3.0 but had to switch to bivona before Ealing would take us. We still use bivona 3.0 so I know for definite that there is no shortage!
Hi Sarah,
Have you got open access to the hospital also? We have open access to the local childrens emergency admission unit (RVI, Newcastle). I used to go there a lot with Dominic was a baby, rather than the GP. You at least get to see a paediatrician who knows a bit about children with trachys. I only go now if he is ill enough to stay in his cubicle - we've caught RSV and pseudonmas there in the past. Thought I better add this risk!
Also, if the CCN are less than useful, have you a community physio? They are also very good at listening to chests. We were referred due to Dominic being behind in walking etc. due to time spent very ill in hospital as a baby. That's all sorted now, but our Community Physio keeps Dominic on her case load in case he ever needs chest physio. I sometimes call her to come to the house to listen to his chest if our CCN is busy.
Not too sure if this is any use, but just thought I'd see.
Laura
PS: Good luck with the complaint - you've done the right thing.
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