The Sound of Silence

I have always been a sociable person, loved lots of noise, music, people coming and going but lately, not so much.

As Jack's condition has deteriorated so much over the years, I have needed more and more outside help coming into the house just to get him up in the morning and put him to bed.

I have gotten used to this, albeit very slowly but because he is now transitioning from child services to adult services the amount of people coming into our house has ramped up to the point that it no longer feels like home!

It is a necessary evil at this point as looking after Jack requires a person to have more skills than a ninja! There's training for his pep mask, nebuliser, suction machine, cpap machine, peg training, percussion training (and no that doesn't involve music!), epilepsy training, VNS training, cough assist machine, medication training and then there is the whole other part of medication....the As Required Meds!!. Then there is the theory to learn about why we have to use these tools in his care.

In order to gather information about Jack and his care I have had loads of people coming to visit to find out what they need to do in order for the transition to go smoothly.

So far we have had visits from the physio, dietician, social worker, community nurses, management from the new respite service, carers from the new respite service doing shadow shifts, occupational therapist to name but a few. These people are brand new to Jack, Holly and I so we are having to slowly build up a relationship with them, which takes time.

The transition only really started in January as there was a bit of a mix up and Jack's file ended up with the wrong social work team. The right team then only had 3 months to get a package in place before Jack turned 18. The respite unit he had been going to as a child were not willing to negotiate keeping him on a couple of months more after his 18th birthday to give us a little more time to get the adult respite unit up to speed. So we were really up against the clock.

I have learned that what is acceptable in Children's Services doesn't easily transfer over into Adult Services. They have to have a brand new protocol for EVERYTHING!!! Written in a completely different format too!

This is a good thing in my opinion but oh my, what a shock to the system that has been.

In our house, we have a camera in Jack's room leading to a monitor in my living room. This means when Jack is in bed at night asleep or not, as the case may be, I am able to keep a close eye on his breathing, seizures, whether or not the cpap machine is leaking as there is no alarm on it, whether or not Jack is bypassing the cpap, whether or not he is attempting to climb out of the bed or pull the hose off of the cpap! This is a very useful tool in his care because it's either that or I have to be in the room with him at all times which I have done and he then doesn't sleep very well at all as he is aware of the other person in the room. Jack also has what they call "cot sides" on his bed and this is also an issue of concern in Adult Services as this is seen as restraint. Without them, he would fall out of bed as he has no sense of danger, no saving reactions at all. I know this will happen because it already has!

The camera, monitor and cot sides, according to the Adults with Incapacity Act is seen as a Deprivation of his Liberty. I had never heard of that sentence in my life before but believe me it is indelibly printed onto my brain now.

No one is able to look after Jack without this valuable tool. It doesn't replace us checking on him as he his checked hourly when fast asleep and every 15 mins when agitated or restless. This tool was requested by the Occupational Therapist when he was about 9 as the epilepsy monitor on his bed was not picking up half the seizures that he was having and therefore I was missing so many of them. Usually he was at the laboured breathing stage of the seizure before I would hear it through the baby monitor I had at the time. I would then have to run at breakneck speed, down the stairs and through the hall to his room to try and help him.

Believe it or not, we had three separate doctors coming to our house last year during the application Holly and I had put in to be Jack's joint guardians. They saw what we had in the house in order to keep him safe but not one person picked up on this being an issue but it is now.

Jack's social worker sent a letter to our local Paediatrician at Dr Gray's Hospital and she wrote back detailing the need for these tools and the reasons why he can't be looked after by anyone without them. Respite are happy with this and have a copy of the letter which the Care Commission have said is sufficient evidence for them to use the cot sides, camera and monitor but it's not for us!

So now Holly and I have to apply for what is called a Variance to be added to our Guardianship order, giving us the power to use these tools to keep Jack safe. It is so damn unbelievable. It has shocked the social worker at Rachel House children's hospice to the point that she was unable to form a sentence without getting extremely angry for quite a while.

No matter how crazy if seems to me or anyone else, the facts are that it needs to be added into our Guardianship Order.  So now I just want to stop talking about it and get it done.

Jack had his first four nights of respite with Adult Services on the 8th April. Unfortunately respite didn't have a suitable bed for him as the one he requires had not been ordered; this was due to a confusion as to whether the funding came from the NHS or from Social Care. It has since been ordered but this meant that the respite care had to take place in my house.

Sooooo many people coming and going, it was crazy! I managed to get an hour or two respite, here and there but I think I was more exhausted by the end of the four days than ever before. Saying that though, it was really really useful and I think the staff are perfectly capable of looking after my complex but very gorgeous boy, they just need to relax a little. It was also good for them as they were able to pick my brains at any time and also see that I am quite a laid back, approachable person which makes it easier for them to ask me questions.

We are all in this together after all so it is vital that all the services work together to achieve the best result.

I have always thought of my home as my safe place. The place I can just be me and no longer have to put on a brave face for anyone. That hasn't been the case lately as the last few weeks have been a major challenge with the amount of traffic coming in and out of our home. I have had to keep the "brave face" welded on, the smile on my face struggles to come naturally now and feels forced and I feel invaded. I want to batten down the hatches and put up signs on the front and back doors saying "Enter at your own Risk" and that the "Those of a sensitive disposition should turn around and leave as swearing takes place here" or even "Don't poke the bear, she bites"!!!

That is why, these days you are more often likely to find me in the house when no one else is there, with no TV or radio on enjoying the sound of silence. I never thought I would say this but honestly it is the most amazing sound ever!

Too tired to care

I am tired.

I am struggling.

I am overwhelmed.

I feel inadequate.

I am hiding.

I am struggling to get motivated.

I struggle to get out of bed.

I struggle to smile.

Little things stress me out.

I can be tearful at the drop of a hat.

I feel isolated.

All of the above statements are true at the moment.

Do you ever feel like everyone wants a piece of you and if you give them what they need you are going to shatter into a million tiny pieces?

I don't understand it. But I know what it is.

Loss.

No one has to have died for a person to experience loss.

I live with it daily. This roller coaster life that I live with my very precious and sweet child, who has more health issues than you could shake a stick at, is tough.

People have told me that I have a choice! A choice to what I ask? To care for him, they reply.

These are two types of people who say this: professionals and people who have not an ounce of empathy!

I do not care for him out of duty. What most people just don't get is how much I love and adore him. Jack has the right to life in a family environment in the care of people who love him surely?

It would be like me suggesting to a mother of a very healthy, naughty child that really, he would be better off in care....can you imagine the furor that would cause? Not to mention the offense she would take!

Jack, Holly and I have a bond that is so damn strong. I have no idea what the future holds for Jack but with 3 significant episodes of deterioration in his health over the past 4 years, I can only imagine what is next.

I am not selfless. I have not put my life on hold for him. I don't feel that he holds me back or stops me doing things.

Actually it's the other way around. I often feel that I don't give him enough opportunities and that our world has become so small. I am only one person so going places with him requires help as I can no longer lift him alone not to mention the emotional and physical toll it takes on me.

Planning a day out or a short trip away is a major operation. Jack's entourage would make a celebrity jealous!

Then there is the problem of changing him when we are out and about. Disabled toilets are a joke if you are unable to move your body yourself so the only alternative is to change him on a dirty floor in said toilets but now he is even too big for that!

Visiting friends is a no no cos most of them have steps up to their house and it costs a fortune to buy portable ramps. In fact anything specifically for the "disabled" gives companies carte blanche to charge 3 times as much for it!

This is not a pity party, far from it. I just need to get this out otherwise it is going to erupt out of me like a volcano!!!

I very rarely tell it like it is cos when I do, people say the most stupid things!!!

A friend of a friend, after hearing how ill Jack had been, said " you just don't have a life do you?" Resisting the urge to smack her one, I replied " if I didn't  have a life then I would be dead!"

Just because my life is so damn different to yours doesn't make it any less valuable!

I do what I do, I get by, I ride the storm. I am strong but I am expected to be stronger.

The respite unit Jack goes to were feeling overwhelmed by the level of care that he now requires. They wanted more support from the NHS to look after him. They dumped this on me as I went to pick him up the first time he was in respite after coming out of hospital.

What the hell? They got the reassurance they needed eventually but it meant 4 months of uncertainty for me.I don't think they realize that it has hurt our working relationship.

I never complain about the level of care Jack requires, I am just grateful that he has survived the latest trauma and he is still with me.

There are so many ordinary people like me in the this world. Fighting to keep upright in extraordinary circumstances where they are pushed to the limit.We don't want pity, just understanding, support, love,a tiny bit of empathy and for our voices to be heard.

We may be down, but we are definitely not out. Thanks for listening.

Exhausted.com

Hey from very sunny Scotland.

I have been awol for some time as Jack was back in hospital with unexplained pain. It seems to have come from his bladder and kidneys. Stones were queried but not proven.

The pain was fairly intense and it took a long time for them to get him to a point where he was comfortable.

It was a very scary time as he had three periods where he stopped breathing and was rushed to HDU. My stress levels were off the Richter scale!

This is the day he properly woke up in HDU after about a week of pain relief and sedation

We are home now and he is still a bit uncomfortable so I am now searching the web for some home remedies as he is ok when he is lying down but really uncomfortable sitting up.

Exhausted doesn't even cover how I feel but on the plus side I have my lovely daughter home for the summer and she is helping to keep me sane.

I hope all is well in your world my little gigglers. 

She is talking shit!

I have had a very busy few weeks but now it is the school holidays....thank god.

For me that doesn't mean a lie in as such but it does mean that I can start the morning a little bit slower than my usual "hit the ground running" start to my day.

These last few weeks I have managed to wean Jack off the pain killer Tramadol which he had been taking for his reflux. That went smoothly but more or less as soon as he stopped taking it, he started having looser bowel movements. This is most likely because the Tramadol can often cause constipation therefore coming off it can make things looser. Plus this is an ongoing problem with Jack and I am continually juggling medicine to keep everything regular whilst making sure he isn't constipated as this can cause his seizures to escalate.

Very quickly this became a problem for the school who made a huge fuss suggesting that he had a dose of the runs and complaining about having to give him a full change of clothes twice a day. It didn't help matters that they were using the his old pads which are way too big for him and therefore more likely to leak.

The teacher insisted that I come and look at these soiled pads because in her expert opinion, Jack could be dehydrated and need medical attention. When I told her that I knew exactly what she was talking about and that I wasn't worried as it wasn't as if he was pooping every half an hour for god's sake!

For over 2 weeks I was continually harassed by this teacher about this problem even though I had explained that he had changed meds, was still recovering from his Fundoplication, had had his feed changed umpteen times in the last year, that I was no longer giving him medicine to keep him regular and that I was trying to adjust his feed to help with this issue.

pic from here

This teacher was complaining that Jack was spending well over an hour in the bathroom every morning getting cleaned up by two members of staff leaving her short of help. I explained that I could shower Jack, wash and dry his hair, dress him and get him into his bed in 30 mins so what exactly were her two members of staff doing in the bathroom all that time!

I was getting so damn stressed by this teacher's continual harassment and it all came to a head on the day I was picking him up for an appointment at wheelchair services in Aberdeen. This teacher high jacked me as I was coming in to collect Jack, insisting I take a look at his soiled clothes because she felt there was a problem and I obviously wasn't willing to do anything about it, in her eyes.

I was furious as I knew exactly what she was talking about, had been dealing with this problem on and off for years so I said through gritted teeth "I am already doing everything possible in the background and I am literally jumping through hoops for you to solve this problem!" I think she knew that I was angry cos she finally said "It's not about me, it's about Jack". I totally ignored her then cos this is the first time she actually mentioned the inconvenience it was having for poor Jack.

I just wanted to get the hell out of there. But no it wasn't to be as this woman made sure she kept at me right up until I got to my car where she finally buggered off!!!

By the time I got Jack into the car, I was that mad, I was crying! Now it takes a lot to make me cry so you can just imagine how bloody fuming I actually was. I really don't think that this woman had any idea of the self control it was taking for me not to smack her one!

pic from here

By all means, as a professional, express your concerns to a parent but when the parent is listening and giving you valid reasons for the change and asking you to wait and watch and see, then you should at least allow them that courtesy instead of coming up with your own diagnosis of something you know nothing about!

I spent most of the drive through to Aberdeen in a state of rage and despair. Rage at this woman and despair because Jack was so floppy and tired while he was sitting in the back of the car in his wheelchair, that his head kept flopping forward and partially cutting off his airway. This resulted in him having periods where he was going a funny colour so I had to stop the car and put on his soft collar.

By the time I got to Wheelchair Services I was distraught and quite frankly I had had enough. I felt such a fool when I got upset again explaining to the O.T. that Jack no longer has the energy to even keep himself upright and he is practically folded in half in his wheelchair these days.

This, to me, is a real, bona fide problem as it impacts on his organs, his breathing, his muscles etc etc and to be honest is a much bigger concern to me than anything apart from the seizures.

The next day I sent a new pack of pads to the school, suggesting that they use them instead and also asking them to dispose of the sterile water they were using in school as I had noticed the bag they had given me was about to expire. I was still pretty mad but we were going to be having a review meeting the next day so at least I was getting to air my feelings then.

Within the hour, the teacher was back on the phone explaining that they aren't using the sterile water these days but that they would dispose of it. She also said that she was phoning to "clear the air". That's when I let her have it! I was so mad that she was trying to sort it out before this meeting that I didn't hold back.

You would have been very proud of me cos I managed to get my point across and I didn't swear, not once! LOL.

pic from here

She kept apologising when I said "you are actually undermining my parenting by suggesting that he is dehydrated. Do you even know what the signs of dehydration are? Do you actually think that if I thought for a minute that this was a problem that I wouldn't have called and spoke to a doctor by now? Do you even know that if I withhold the meds for keeping him regular, that he then might become constipated and could  start fitting like crazy? What would you prefer; him to have looser bowels or to be 999'd from the school because of seizures? I know what I would choose!"

The very next day, at the review meeting, the Head Teacher said "so it seems the bowel problem has been fixed, what did you do?" I answered "making sure the school are using the right size pads has helped hugely, withholding meds and altering the speed of his feed but these are not quick fixes".

She expressed her concern that her staff were in the bathroom for so long but when I queried this, saying how quickly I could do it, I then turned to the teacher and asked "why are they in the bathroom so damn long?" She replied that "well, he often has a seizure whilst in there!".

I threw up my hands saying "so it's not his loose movements that are keeping him in there so long then!"

I rest my case.

Ten months on....

The summer has passed in a blur and Olympic fever has definitely gripped the nation.

I am loving the games and I hadn't realised just how competitive I was until I found myself screaming at the TV urging our athletes on. I have made Jack jump quite a few times when yelling without warning!

Poor Jack has to put up with both Holly and I jumping up and down shouting "C'MON!" at the top of our lungs. He is in respite tonight and I am sure he is glad of the peace and quiet.

Jack is doing well but he sleeps a lot, sometimes up to 15 hours a day! His seizures haven't been too bad either so I can only assume that it is a combination of being a teenager and being so active all of a sudden. It does worry me though but there is no point getting him up out of bed, just for him to sleep in his wheelchair which is giving him zero support at the moment.

Totally zonked!

His scoliosis is really obvious now and his ribs are sitting on his hip so he is slumped over to the left. I am trying everything to prop him up in the chair but nothing seems to work. I have an appointment with wheelchair services on the 16th August in the hope they can put in an insert of sorts into his chair to "prop him up" failing that they will have to order a new one and that can take up to a year to come!

I learned in February, while at Edinburgh Sick Kids that his scoliosis can't be fixed. It is so very severe but thankfully it is the lower part of his spine that is twisted and therefore it is not pushing against his lungs. Small comfort let me tell you. They could operate but they would only be able to improve his spine by 60%.

You can see how little support his chair is giving him

They are not willing to take the chance though because a) he has a VNS fitted which means they can't use Diathermy (for treatment of healing and pain) during surgery and if they did, it would "fry" his vagus nerve and b) after his two episodes of aspiration pneumonia only weeks apart it was felt that even without the VNS his breathing would become compromised during the long hours (10 at least) of surgery.

I was absolutely distraught so much so that the nurse offered to take Jack back to the ward to give me time to take it all in. I couldn't stop crying and Granny Mac was equally upset.

The surgeon told me that once he was 18 and had stopped growing, he would need a really good moulded wheelchair. He also said that Jack's spine would become fixed and his ribs would permanently sit on his hip and that he would require pain relief.

you see what I mean?

The good news was that his spine was already at that point so it had nowhere else to go so wouldn't actually get any worse! This was little comfort but once I calmed down I realised that I was breathing a sigh of relief. The decision about his back had been taken out of my hands so I never had to sit through 10 hours plus of surgery wondering if he was going to pull through or not. Holly was equally relieved when I told her but upset at the same time. We are so alike.

This news came at the end of the 4 months Jack had spent in hospital and it was a cruel blow. Since then there have been lots more dramas, mostly to do with a broken leg and with his feeding tube falling apart, cancelled operations, then having the operation and getting home.

When we arrived at the hospital the 2nd time for Jack's fundoplication, it all looked good and I was hopeful that the stress of the last few months would soon be over but the next day, the operation was cancelled again! I couldn't believe it. They suggested we go home and come back a few days later but with tears  streaming down my face I stood my ground and refused to go home as his feeding tube was constantly falling apart.

The irony was that I had fixed it the day before we went to hospital and it was still looking semi decent. Granny Mac and I went for a coffee and whilst there I told her that the only way to make this operation happen was to "unfix it". I could not go home worrying that the only means of getting any kind of nutrition into him could pack up at any moment. It was too much after everything else I had dealt with.

That was the on the Wednesday. By Sunday his tube had come so far out of his body and was held together by sticky tape.I knew that it couldn't possibly be in the right place now and then it started leaking feed that afternoon, totally packing up in the early hours of Monday morning.

This is how bad it was the day before the op

Jack had his op that day and spent the night in intensive care. The surgeon told me that I had been correct and the tube was no longer in his stomach instead it had become enbedded in his stomach wall and had to be cut out. It still wasn't a button peg but we were a step closer.

comfortable after his operation

We got home 8 days later at 5pm, in time for the carer coming in. Marion was delighted to see us and I was glad of a small breather after driving for 4 hours.

Three hours later, Marion and I were putting Jack's meds through his tube when it became blocked. We tried everything to budge it, to no avail.

I called Edinburgh in a total panic, they told me what to do, then told me to call back. I did everything the nurse said and more but no it wasn't budging. Holly called Granny Mac and we spent a further 20 mins trying to unblock it with me lurching between tears and total calm. Eventually we took him up to the local Children's ward where they spent until 3am trying to unblock it. Meanwhile Jack, who thankfully slept through it all, was  stuck with needles everywhere as they desperately tried to find a vein to support fluids.

I was totally inconsolable as they said we would have to go back to Edinburgh or back to Aberdeen. Had we not had enough? Could I not spend an evening at home without some major drama unfolding? Why couldn't anything just be straightforward?

Thankfully Marion, Granny Mac and Lynette the overnight carer were very supportive, as were the nurses. Marion made me endless cups of tea which she was allowed to take into the treatment room which is unheard of....that's how distraught I was!

I fell into bed at 3am once they got Jack into bed. I was worn out.

The next day, a lovely doctor tried as well to unblock the peg with no luck. He said that he should be able to just take this one out and put a new one in but I suggested he check with the surgeon in Edinburgh first.

By 2pm, he had all the information he needed and he took the blocked peg out and fitted a new one. Turned out that the calcium they had prescribed to help his leg heal (which was still in bloody plaster 3 months on!) had hardened in the tube and that was why we couldn't fix it. I had to be so so careful from now on, giving it to him separately so it didn't attach to the other meds. STRESS!!!

We went home and all was well for a few days but then the tube wasn't making a firm enough connection to the feed pump so I had to tape it on every time Jack was fed. Then the lid of the opening started to fall apart and my stress levels were high once more! Luckily Alba (respite) came to my rescue and they found an attachment which hasn't moved since. I could have kissed them!

Tomorrow, 10 months after all the drama started, Jack will finally have come full circle when we get a button peg put back in. You have no idea how happy this makes me. I wont believe it though, til it is in situ!

From there we will go to Rachel House Children's Hospice for us all to have some well earned TLC.  I am sooooooo looking forward to that.

Hello there

It's been such a busy week and I feel worn out!

Jack didn't get his operation after all. He was fine the day after his temp was up and laughed most of the way down to Edinburgh. We arrived exactly at 2pm but it took us about half an hour to find a parking space. After we (Granny Mac and me) got Jack settled the surgeon came to see us.

He explained that there was a shortage of intensive care beds available and that they wouldn't know until 8am the next day if a bed would be there for Jack after his op. If there wasn't one, then no operation.

I was gutted to say the least. What with his tube falling apart and holding it all together just to get to this moment, I just felt so damn exhausted all of a sudden. Then the surgeon caught sight of Jack's cast and I really thought that the operation was definitely not on the agenda just by his reaction. Apparently Jack's legs need to be up on stirrups for this operation with the surgeon operating between his legs. Not easy to do with a full leg cast.

I never for a moment thought of that, especially since I had checked with the orthopaedic consultant at the time he'd broken his leg so you can imagine that my heart just sunk. Thankfully he is a very inventive surgeon and once he saw the range in Jack's hips and realised that the other leg doesn't straighten either, he decided that he could most likely work around it. Phew!

The next morning, the ward called to say that the surgeon was already on the ward looking for us so we high tailed it up there only to be told that two emergency cases had come in overnight and therefore Jack's operation was cancelled. I know it can't be helped but I was so hoping for it to be all over by now and for us to be getting back to some sort of normality before the sunnier days. Don't you just hate it when someone moves the goal posts???

Drumochter Pass -  on the road I drive through to get to  Edinburgh

I text Holly to let her know that we would be heading back later that day and she called me straight away crying as she was off school, feeling pretty awful and sorry for herself. When I'd left her she had been fine. What a difference a day makes! The drive home was uneventful. We got back home about 5pm on the Friday. Getting Jack out of his chair I noticed that his tube had split again and had come out by about a foot.

Trying not to panic, I gently slid it back in and phoned Edinburgh Sick Kids straight away telling them that if it had been displaced, then I would be heading back their direction in the morning. Having improvised and taped it together with sticking plaster, I was on tenter hooks the rest of the night, watching and waiting to see if he was going to vomit his feed but it seemed my worry was unfounded.

Instead Jack's breathing was rattly and he was coughing up yellow stuff so I called the doctor who came out and prescribed antibiotics. I had two kids coughing, sneezing and feeling sorry for themselves and I felt like Florence blinkin' Nightingale by the time the day was through.

By Monday night things had improved but then Jack's tube came apart again and I'd to replace the sticking plaster. I didn't sleep much that night, worrying about it so the next morning I called Aberdeen Sick Children's and was told to bring him in that afternoon so they could take a look. They told me to be prepared for him to have a general anaesthetic if need be. So off we went (Jack, Granny Mac and me) back to that dreaded place!

Jack having a nap on his bean bag, oblivious to all my stress! 

I decided that we weren't staying so I didn't bring any supplies with me so if they'd wanted to admit him they would have had to do it without all his meds etc. Tee hee hee....no flies on me ya know!

Luckily, after lots of scratching of the head and looking at x-rays they got a surgeon to have a look and he fixed it in 5 mins. I was sooooo impressed. So much so that I told him "that I was so relieved that I could kiss him!". I didn't but hey that's how happy I was!!!

Now I know how to fix it, I have relaxed a bit. Just as well cos I cannot keep up this level of stress any more! I just need a little quiet, is that too much to ask?