Welcome to any new followers and readers.

I want to welcome all the new likers to our Blog.

We are slightly dysfunctional but i think that works for us. 

my long suffering husband J and i have been together for 17 years so far.

we have three children, J, O and F. They are currently 15, 12 and 6. I am am also a part time specialist nurse for people that are tube fed. .

All this is in addition to all the nursing experience that i get at home while juggling the children. all three children have additional needs that require specialist care and are the reason that i eventually took the brave step into nursing. 

It was while changing a feeding tube on the floor in a restaurant after it has been pulled out that i realised that i wasn't all that squeamish actually.

We spend a lot of home time doing medical care, visiting hospitals and trying to stay out of them.

We have a family condition called Ehlers Danlos syndrome type 3 that affects us all in our joints.This is myself as well as the children. This ranges from joint pain to full on joint dislocations, dysphagia, gut problems etc.

 All three children have needed fundoplication surgery for severe gastroesophageal reflux. All three have been tube fed for significant amounts of time. J has his feeding tube for 13 years and it was just removed a couple of months ago O was fed for 10 years and her tube was removed 2 years ago now. J also has ADHD and Anxiety, O has a habit of fainting and has nose bleed but its F that brought us here. 

F is our little mystery. He has a lot of different issues but no over all name for his problems. He has a cyst that has moved his entire left temporal lobe in his brain, he has hypotonia, he has hyper mobility, he has severe reflux that hasn't been resolved by the fundoplication surgery as his has herniated back into his oesophagus, he has gut dysmotility problems, he is jejunostomy fed, he has a mild global development delay, He has some kind of MAST cell activation disorder, He just has allergic reactions to anything. He has a deletion on chromosome 14q21.2, he has small intestinal bacterial overgrowth and other little quirks.

we or especially i am also a huge Geek. A title worn with much pride. I love doctor who, Harry potter, elementary, red dwarf and also Sherlock. 

I try very hard to pass this onto my children much to their embarrassment sometimes. 

Although F is proving to be a Harry Potter buff even at the age of 6. It's makes me so proud when he jumps about shouting spells. He is becoming more and more obsessed, plays it at school with his friends. loves to dress up and wants to go to the harry potter studios for every birthday. 

The best thing is that so far he only thinks there are two books and films even though he has been to the studios, his delay means he hasn't spoiler-ed himself. it means that as he grows up he will be able to discover more and more too just like i did. 

i hope that i will post regularly on here for you all to read but feel free to join in, comment and let us know where you are from, ask questioned. Share you favorite Geeky quotes, pictures stories. 

thank you reading x

Amazing friends

Tube feeding awareness is very much relevant for my next post. 

How social media helped me survive. 

Something amazing came out of two families having tube fed children. 

That something is a someone. She is called Sasha. 

Many many years ago I was a mum of a 2.5 year old (jack) who had just had reflux surgery and had a feeding tube fitted and a screaming, scrawny, failing to thrive baby (olivia) on an online forum looking for help to cope. 

Unbeknown at the time Sasha was also the mum of a 2 year old (Skye)and had a similar screaming vomiting newborn(Zara). 

Through the forum that would become living with reflux, back in the day it was msn site and internet was dial up. we started to cross paths. Answering the odd message with sympathy. One day Sasha was upset in chat because her daughter, Zara hadn't gained any weight and they were concerned. At the same time olivia was the same. Olivia was my biggest baby at 7lb 15oz by this time she was 3 months old and only weighed 9lb. She just couldn't keep feeds down. We were admitted too. 

Bear in mind that I live in the middle of nowhere in the Yorkshire Dales and Sasha lived smack bang in the middle of London at the time. 

We were miles apart but kept talking. You find out when your child is ill just how lovely and isolating it is. 

No one knows what to say. 

You feel like it is your fault and to be honest The hospital make you feel like it is too. 

Sasha was unique as she knew exactly what it was like as she was living it. 

The first night was our first phone call. I nervously picked up the phone. I needed to check up on this family who were struggling like myself and I needed to vent the frustrations that were building from our own admission. 

Sasha answered and that was the start of hour 4 hour long phone calls sometimes. 

Both our babies had been fitted with NG tubes. Sasha daughter had been referred for the same reflux surgery as jack, my eldest had had. This meant that I could share our experiences of that as we had had a positive surgery and as I remember at the time the website members were anti surgery because it was rare back then that this surgery was done on children without complex neurological conditions. 

Olivia was on the wards for observations. People were watching me make bottles and try and feed her. Offering to try themselves thinking they would be able to do it better. It wasn't a good time but each night I had sasha to talk to who had her own tales of woe. Someone who understood how heartbreaking it was to not be believed and to be judged. 

We hadn't done anything wrong and luckily it was clear after a few days that Olivia's reflux was the problem. It didn't stop the odd nurse being really rude. 

We could remind each other that the nurses could overhear what we were saying so to be careful not to bitch about them. 

We fell into step then. When one of us was in hospital the other one would ring to support and remind the other that it wouldn't last forever. 

This then started the ring when we were home too. I ended up getting a cordless phone so that I could move around and still talk. We went off topic all the time and would realise that we had spoken all night. I'm sure one of us fell asleep on the line too. It was just so good to find someone who understood. 

In time. Zara had her surgery and then olivia had the same fundoplication surgery and they both got matching Gastrostomy tubes. 

I still remember clearly Sasha ringing me one day in a panic because the end of Zara's PEG tube had come off and she didn't know what to do. 

I'm 200 miles away so couldn't do it for her. So over the phone I explained how to do it and we were successful. 

Sasha was there through the grotty milestones like trying to get jack to sleep on his own. She kept me sane when he was on one side of the door screaming and I was on the other side crying.

She stopped me killing my husband when after 2 hours of trying to settle jack. He would just go and lay next to him to stop the screaming. 

We used to google each other problems so that we could filter out the scary ones. Sasha rang me once about a cyst that her daughter had and then several years later Sasha was googling arachnoid cysts for me when we found out that Finley had one in his brain. I'm sure we kept each other sane. She definitely did for me. 

We finally met when the girls were about 2.5years. I got on a coach with Olivia to London and sasha met me on oxford street and it was scary and amazing. The kids got on so well and me and sasha talked all day. I still remember that we bought the three girls peppa pig sunglasses and they looked like triplets. 

Roll on the years and sasha had a little boy called Will who has his own special needs. She would come up to Yorkshire and stay at our house. She would come on her own with three kids and more bags that anyone should be able to carry and made it look easy. 

She once came at xmas with gifts and I swear to god to this day I don't know how she got here without help. My dad picked her up at the station and she filled the car. 

The kids got on so well we were lucky that way. we would speak nearly every day even if it was a message on Facebook or a text. We would just keep updates. 

Since then I've had Finley who had his own reflux surgery and more tubes than any of the others put together. I've been to university twice and got two degrees, a job. 

Sasha has had 3 more children. One who has severe epilepsy. Found a good man, got married. Fought her way through the school systems. 

We have been through more hospital stays, Camhs, social workers, statements, written far too many DLa forms, joys and tears. 

We have had the absolute delight of the girls finally after years of needing them getting their feeding tubes taken out. 

Yet through all of this. We still talk. We still support. We still visit. 

In fact in the last couple of years we have spent more time together than ever. 

I have been her maid of honour when she married the love of her life. I am godparent to two of her children. 

She would be godparent of Finley if I'd got around to getting him christened. 

Our screaming poorly babies are now beautiful 12 year olds. They have grown into amazing preteens and they are the best of friends. 

I can't go a day without hearing the voices of Skye and Zara mixed with Olivia's and jacks. They talk as much as me and sasha did when we had the luxury of time and its Brilliant that they have bonded so much. 

Sasha is my new sister. She is adopted by my whole family. Distance just isn't a factor. Everyone who is on this journey needs a Sasha. 

Who knows you might also find a friend for life.

Are you tired?

are you tired?

So so tired.

If the powers to be let us sleep tonight I will never complain about being tired again when I'm not really.

Dog tired, shattered, knackered, which ever term you use.

We all use the term, all the time and I'm sure we think we are tired but actually you can still function, everything still gets done. You can manage to go out, socialise, hold a conversation.

You could carry on like normal but with the odd yawn or achy feet.

Now if you have have ever had a sick child then you will have at some point been really truly tired. The days after you have been kept up all night or seen every hour even if you have slept are so hard to get through. If you have to give regularly timed medications that can't be missed not even that 4 am one that no one else is awake for.

The worry that you will go to sleep and something bad will happen, not a paranoid panic but a reality for many parents meaning that any sleep that they do get is poor and very disturbed.

Then you will have been tired, so tired that you forget what day it is, can't hold a conversation because it takes too much effort.

Go out in odd shoes because you are working on an autopilot that's colour blind or just doesn't care any more.

You have your t-shirt on inside out but don't care or you feel sick because you are so tired.

It does strange things to you. Makes you cry at anything or shout when you wouldn't normally.

Makes you eat all the celebrations, even the bounty's when you aren't even keen. You still eat them.

Sometimes it's your only meal as your body starts rejecting food as it all makes you feel sick.

Or your child can't eat but wants to do you can't eat in front of them but you can't leave them either so you go without until they are asleep.

I've seen many a parent passing out in the hospital because of this. Your body isn't designed to starve but you do it because you have to.

We know we are failing, we know that we need to make phone calls, need to fill forms in, need to cook, clean, buy things etc we just can't do anything about it in the moment and when this is pointed out we will get very defensive and upset...(sorry mum)

You feel like you are going mad because you can't remember anything or you sit down and lose 15 minutes staring into space.

It makes me forgetful, I have a degree and a post graduate in nursing and I forget the day, struggle to remember names or what I did the day before. It's an awful feeling.

i cry at the drop of a hat. i cried because cars moved out of the way for an ambulance. i cried even more when one didn't. i cried because my husband asked me if id sterilized the syringes (i hadn't ).

The bigger kids have been shouted at a little for not doing things asked or for being too loud and it isn't fair.

i find i go into my own little shell, i cant hold a conversation properly so tend to avoid the phone, luckily i have a couple of great friends that don't mind me talking crap or falling asleep while on the phone. they have been there and know what it is like.

it is hard and we need a little slack sometimes. partners don't say things like oh yes i was awake too. i mean you can if you were awake but if you woke up grunted and went back to sleep that doesn't really count and will just make me want to shout.

don't point out all the things i should have done and didn't do, i'm likely to cry, swear or put the phone down. a nice thank you for managing what i did do would be great.

i have had a little more sleep the last couple of nights and the sicky feeling had gone and i could finally sit down and write this because i tried the other day and didn't save it and it deleted and i cried.

The decline of District Nursing,

Well..... sorry it has been a while.. A long long while.

I have no real excuse aside from busy life, although work has been hectic.

As some know i am a community nurse part time around my children's medical care. A job i have always loved, it was my goal all through my training to get out into community and make a difference, for 3 glorious years until....

To start district nursing is changing, we are getting patients discharged who until recently would have stayed in hospital, the skills that are needed are increasing as we do more and more to keep patients at home to avoid admissions. Chest drains, chemotherapy, flushing picc lines and negative pressure dressings are a few of our latest skills

Currently community nursing in my area is undergoing a lot of changes. These are not always for the better. They have changed from locality based to GP aligned. This means we have to drive further which takes longer, great when they have just cut the mileage money that we would get for using our own cars. They have changed all of the shift patterns and now no one knows what anyone else is doing. We now have long days and short days, early shift and then shifts all the way up to 10pm. Gone are the days when district nursing was the better job to fit around your family. Some nurses have been working 3 weekends a month for months on end. The then decided to move half the nurses to a different base and move a whole host of new nurses in, then changed all the little teams about so we all feel like we have been on the Smiler at Alton towers.

Then when we weren't confused enough they gave everyone a laptop and decided that every patient on the case load needed reassessment, this takes 2 hours minimum and we have nearly 2000 patients.

It has been leaving us nurses on the ground demoralized, unappreciated, ignored, over worked, underpaid and sometimes with no lunch/breaks because you know that if you don't go to the extra visits then those patients wont get seen that day. My conscience will not let me enjoy lunch knowing that people who are sick wont get their visit so i choose the work.

i wouldn't mind but its not even been good for my diet because i end up stress eating chocolate and whatever i can find in the car. even those out of date voice tablets got eaten!!

Then the whole paper light/paper free thing comes in. This should be labelled

Won't have time to do the paperwork on the computer so will have to do it at home.

I am getting home from a long shift and then having to do 2 hours of UNPAID work on the laptop catching up with outcomes and assessments that cant wait.  All to protect my PIN and to stop the niggling messages from management to ensure my outcomes are up to date.

Work suddenly became a chore when it hadn't before, morale was so low, we were and still are losing good experienced nurses in droves, 8 will be leaving in the next month, 8 good hardworking nurses who have had enough, some are going back to hospitals because it is now the easier option for families.
In a meeting when they knew 6 were leaving, we had raised concerns about being short staffed and were told that they would only be replacing 1 nurse but don't worry they have a new manager.

I hope that she comes with a band 5 uniform and she can go out on visits.

We have lots of management, at the moment they don't seem to be managing anyone, there is no support, all concerns are answered with " i can see the concern but" they are just patching the leaks and sorting out the complaints from irate patients and family members about how their dear old gran didn't get a visit today or this week. Then we fall into the cycle of seeing the complainers to stop the complaints coming in and the lovely sweet quiet patients who need visits but wont complain miss out.
Can you feel my frustration yet, i hide in my car so that i avoid swearing at any manager who asks me if i am ok.

We are having to cancel anything none essential and then still people aren't getting the visits that are needed.

 so for the sake of my sanity i had to look else where.  

This isn't an easy decision, i love my job, Well i love 90% of it.
sure there are things i really wont miss, like seeing 17 patients a day and feeling like i haven't given everyone of them the time they deserve or getting abuse from patients or relatives for things i have no control over.
To be honest ill be very happy not to have to put female catheters in anymore. I am far too polite to go rummaging around lady bits. that goes for pessary rings too and probably bowel care. If you don't know what that is don't google. just have a think and that's probably correct.

However There is a lot that i will miss.

Some of the patients  are amazing, they are tough and brave. They are so grateful for the care that they get. i feel humble being able to help them on a daily basis. Seeing them recover is a treat.

Being involved with palliative care has always been an honor. Knowing that someone has been able to die where they want to and peaceful is a great feeling of achievement.

Knowing that i have helped a family to grieve for their loved one and being able to support them through this journey. Helping them remember the happy memories that they have rather that just remembering the end.  This is a large part of my job. something that i feel i do well and get positive feedback about and yet i have to go and its heartbreaking that all the skills that i have learnt over the years will no longer be going towards our NHS.

What i will miss the most is my little team, from the top to the bottom these nurses have been amazing, each one having there own strengths and willing to teach and nurture others, our immediate boss, who herself was under supported has been great in trying to motivate the team. Sadly she is also leaving. These ladies and one man will be always remembered with fond memories and lots of laughter, from their often wicked or rude sense of humor.

I don't like change at the best of times so it is a big deal that in a months time i wil no longer be a community staff nurse, i am moving to a Global Enteral feeding company to join their team as a specialist enteral feeding nurse. This job is my dream job, its the one i wanted to do even before i thought of doing my nurse training.It is still in the community and i will still have lots of patient contact.

I also think that i have a unique background that will help me in this role. I have been on the other side, I have been the parent whose child has just been given a feeding tube and I've needed support and training from the very same specialist nurses who i will be working with. I have needed them to go into school to to train F's teachers. i understand the feeling of shock and fear that you get when this huge responsibility is thrust upon you.

All in all a positive move but there will always be that part of me that is sad that my district nursing days are going to be behind me. I have definitely grown as a nurse here and i am leaving a better person for it. Its just feels like it will only get worse and i worry for what the future of district is going to be.

Research seems to be agreeing, pressure-on-district-nursing-services-is-leaving-staff-broken

Undiagnosed and Invisible. Written in 2013.

Did you know that it is possible to be sick and have a list of medical issues as long as your arm and yet still no one can tell you what the problem is.

Did you also know that it is possible to look absolutely fine while still having all of these problems.

F is a SWAN (syndrome without a name) i didn't realise that this was even a thing until i had him and was thrown into this confusing complicated world of fighting for everything.

i'm nearly a nurse and believe in medical science and that people get sick, get diagnosed and get treated. i never thought that their were families out there fighting to get reconised. i see people every day coming through the hospital being treated for problems that has symptoms similar to F's yet we cant get help because we don't know what to treat.

Imagine not being able to tell people what is wrong with your child or why they need to be tube fed or sign makaton.

Imagine having to defend your actions and your childs treatment because your child looks fine.

Did you know that if a child looks fine and has no diagnosis then people presume they are fine and it is the parents fault/problem/issue.

Seems unbelievable in this day and age that such ignorance exists but it happens all the time, sometimes it is heartbreaking like last week after a week in hospital, lots of trouble with F's tummy and tube, lack of sleep and him being so ill  a member of staff at his nursery made an off the cuff remark about well he doesn't need the tube anyway. Followed by the phrase "he looks fine".

Hmmm what he looks like has no bearing of whether his insides work or not but thanks for the opinion that i didnt ask for or need.

Even in hospital it raises eyebrows.

Why is he jejunostomy fed? we dont know.
Why is he so low toned? we dont know
Why is his speech delayed? we dont know
Why does he need a supported chair? we dont know why just because he is low toned and no we dont know why.

then we lead on to filling out forms or answering hospital questions.
What condition does your child have?

Seens like an easy question to answer but when you don't have a diagnosis, all you have are a list of little problems that don't count as a diagnosis and means that you don't get the help that you receive.

Each specialist that you see only deals with the one little problem that you see them for and because they have no underlying diagnosis to work with no one works with the other so each person sees their problem as no big deal and it is left to us, Finleys parents to push for help.

F has two issues that effect his posture and ability to sit and walk. he is both hyper mobile and has hypotonia, this means that his joints are loose and bend more than they should and also he is floppier that normal as his muscles are weaker too.

Together this means that he has a lot of trouble especially when tired to even sit up. those who know him will notice that he can walk and play and sit up ok but once tired he has trouble even holding his head up as he gets so floppy.

This happens much more than it should for a child who is nearly 3 yrs old and leaves him floppy like a newborn and in pain from overdoing it.

Then because we see a different physio for each problem only one problem is taken into consideration at once so we are just left to deal with it and have had to get help from a charity to fund a specialist pushchair and car seat that can deal with F when he is floppy.

If he had a diagnosis of cerebral palsy or something similar he would have a team of people that all address his postural needs and making sure that he was dealt with but because F is just seen as low toned by his physio it isn't felt that he needs a team around him.

Confusing, tell me about it, we feel let down and i struggle with the feelings of being helpless, i also suffer with a confidence crisis that surely if he has a serious problem then they would know what it is so therefore i must be worrying over nothing. This is an awful feeling and one that is rubbish. the hospital see what we see and they are trying to find out the answers to some questions.

This is just something that gets to me every now and then, usually when i have had questions on what is wrong with F,

Some days i feel like typing all his problems into Google and seeing what it comes up with but that doesn't help anyone, Dr Google is one scary doctor.

For now i will go back to what i do every day, i chase doctors and specialists. 20 to be exact. 20 different people involved with my little one and try and get them to talk to each other.

We have to get ready for F to go to school in September so that is more meetings on top of several appointments a week with all of these people to look at their part of F

and hope that one day soon we will get an answer to what is wrong.

Whether we like it or not.

Life after the Gastrojejunostomy

So the last time I posted F was going in to Leeds for his gastro jejunal tube putting in.

The surgery went well. The tube went in without too much trouble and we have been able to get his feeds back up.

He seemed to be great for a couple of weeks. Tummy distending had gone down. The facial rashes and swelling were gone too but they have all been back in the last 6 weeks.

We are giving piriton and citirizine as needed to try and stop any swelling or calm down any flared skin.

He seems to always have a pot belly now whereas he never did before. There isn't always wind in his tummy either.

We do have a referral in to Leeds to see a gastroenterologist to see if they can possibly get to the root of the problem.

The best thing is that we can still feed him while resting his stomach and venting him so he is still getting fed. Xx

Memory lapse or child confusion.

I think lack of sleep and being too busy catches up with you eventually. I had a phone call that showed this up this week.

F has been referred to the Ehlers Danlos genetics service at Sheffield children's hospital and they ring up before hand for an in depth medical history and family tree.

All sounds ok up until now. Well the night before O had been up with tummy pain and needed her wheat bag heating. J had been awake and F's pump leaked all over himself. Leading to a very tired mummy.

So when the poor nurse started asking me questions my memory had gone. I kept forgetting things or getting mixed up on children lol.

I'd tell her about one thing then she would say "anything else" I'd say no, then she asked has he ever had a hernia? I'm saying oh no, not that I ..... Erm actually he does have an umbilical hernia. Then again I said nothing else so she asks if he has had his heart checked and yet again I had forgotten about his tachacardia and ECG's.

She must think that I'm stupid but I did get there in the end with her prompting so hopefully when we get the appointment they will know what is going on with F and see if they can help at all.