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.