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. 

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.

It's all broken

I think I need to write a book about my life!

The problem is that some of the things that happen to me, are at times, so unbelievable that I am sure people will think it is fiction.

If recent events are anything to go by; I was struggling to believe it so how can anyone else?

All of you who read this blog will know a little about the past traumatic few months that we, as a family, have endured.

I was quietly starting to breathe properly for the first time in as many months as things were starting to go well.

Wednesday started off as a fairly typical day in the Mckenzie household. The kids were having a lie in as it's the Easter holidays. I was taking a bit of time to get going as I was fighting off the dreaded lurgy and was feeling a bit sorry for myself but came to after copious amounts of gargling with paracetamol! (A cure Granny Mac treated me to regularly when Jack was very ill and I was constantly coming down with sore throats).

When I got Jack out of bed, he was quite sleepy for the first half of the morning and then as the afternoon progressed he got a little more active. He hadn't had any seizures that day so far so things were looking bright.

Mid afternoon found him rolling around on the floor, getting into all sorts of mischief much to Holly and I's amusement.

He kept rolling towards a large pine cabinet in the living room and I kept moving him away from it as he often bashes his arms or legs against it, incurring many bruises. In fact, since he has come home and been so active, I have talked about moving this cabinet out of the living room into the dining room but with being so busy, I just never got around to it.

I had just moved Jack away from the cabinet for the 2nd time and was sitting chatting to Holly when she yelled "Jack's legs are caught under the unit!" I looked over to see that the lower half of his legs were trapped under the unit, with his knees bent inwards. He was trying to sit up and twist his body in the opposite direction from the way his legs were.

I knew he didn't have room to turn his legs, so I sprinted across the room, which wasn't far believe me, shouting "no Jack!" but as I reached him I heard a loud POPPING sound and I knew that it was too late, that he'd broken a bone. His reaction confirmed it as he was breathless with pain and his face was contorted in agony. I looked over at Holly who had her hands over her ears in shock!

I was hysterical, sobbing, trying to console both him and Holly who leapt into action, getting dressed (we were having a pyjama day!) whilst I got Jack, who by this time was whimpering, into his sling ready to hoist him into his wheelchair.

It took Holly and I just minutes to get him into his chair, a few more minutes to get him into the car and we were at the hospital within 10 minutes.

The shock was starting to set in and I lurched from sobbing hysterically to being ever so calm. Once at A & E we waited about 15 mins before we were seen. It was another hour before he got any pain relief because they tried to give him paracetamol but he is on that regularly so couldn't be given another dose. It didn't matter anyway cos they had drawn it up in the wrong syringe and it didn't fit his jejunostomy tube. She got another medicine in a different type of syringe but again it didn't fit, so poor Jack ended up with an injection into his stomach.

Jack asleep after his injection. Had to put his soft collar on as he was stopping breathing!

By this time it was nearly 6pm and Jack was due his epilepsy meds so I asked them to hurry with the x-ray so that he wouldn't be too late in getting them. He had his x-ray at 6.50pm but there was problems there as they had no hoist so Holly and I had to lift him out of his chair, trying not to hurt his leg but not succeeding at all and causing him huge discomfort.

We then had to pin him down so that he would be still for the x-ray which was like trying to hold a slippery salmon!!!!

Jack's spiral fracture on the right side

We spent another half an hour waiting for someone to come and put a back plaster on to stabilise his leg temporarily. Each time, we saw a different person and I had to go through the whole story again and again to the point that I wanted to scream.

Again Holly and I had to pin him down while they put the back plaster on. No mean feat let me tell you and our stress levels were getting higher by the moment. Once that was done, again we had to take a seat to wait for another x ray. This time, the girl got a set of steps so that we didn't have to lift him then afterwards we'd to take another bloody seat and wait to be told if we could go home. By this time it was 8pm and we'd been there for nearly 4 hours.

the half plaster cast - back slabbed only

We were leaving at 8.10pm and had stopped in reception to put Jack's jacket on when my Dad arrived with Jack's medicine. Seconds after that a nurse appeared to tell us that they had changed their mind and they were admitting Jack. She couldn't tell me why but the decision had been made and there was no point in arguing.

I sent Holly and my Dad off to get feed, pyjamas, nappies etc for Jack, telling them I would meet them at the Children's ward shortly. I was stressing about Jack getting his medicine but was assured we would be put up to the ward shortly.

By the time the doctor came to speak to me, an hour had passed and I was slowly losing the plot. Jack had been sitting in his chair for 5 hours, clearly wasn't comfortable and still hadn't gotten his meds. Add to that the fact my mobile phone battery had died so I couldn't text my Dad or Holly to ask them to come back with the medicine so I grabbed a nurse and gave them a piece of my mind. Jack finally got his meds at 9.30pm when Holly brought them down.

The doctor appeared again to say that he needed to check Jack's chest so took me to an examination room. He asked me "so Jack did this by trapping his leg between two filing cabinets?". I knew I was about to blow a gasket at that point cos I had told the story so many times and each time they heard something different.  One time it was a desk, another time the cabinet fell on him and I was getting so bloody tired of correcting them. It was like Chinese Whispers! So this poor doctor kinda got it. He got 6 hours of my pent up frustration, stress and worry slamming into him as I spelled out to him exactly what happened through gritted teeth.

Holly, realising that this poor guy was gonna get it, came into the room and asked me if I was all right and I calmed down a bit. Then he asked what meds Jack was on so I started listing them, one after the other, in quick succession til his face registered that maybe he had better start writing them down! I did relent and give him a copy of a list I keep with Jack's meds and as he headed out the door, my Dad came in. It was now nearly 10pm.

As soon as I saw my Dad again, I just fell apart, couldn't stop crying.

Finally at about 10.15pm we were taken up to the Children's ward. Jack was sleeping by now and I was completely exhausted, starving and extremely traumatised. I made sure that Jack was settled, that the nurses knew all about his new peg and then I headed home via the pizza take away but to be honest, I could hardly eat.

the full cast in a groovy purple colour

fast asleep waiting for his x ray

The next day there was more hanging around in A & E whilst we waited for the doctor and male nurse Glen to put on the proper plaster cast. Glen turned out to be good company and was a welcome distraction from all the hanging around. Jack had to have a full leg cast in the end, in a lovely shade of purple. He coped beautifully with the pain while they stretched his leg out and was asleep before he even had his x ray after.

I finally got him home at 5pm Thursday night. He slept most of that day and was as bright as a button the next day. So much so that, he even tried to get up on his knees in a full leg cast no less. WTF!

As for me, I am still totally traumatised but now I can laugh about it, just a little.