On the brink of Insanity!

Last year I had two very surreal moments when I feared for my sanity! The first one happened the first week of January, 2012. After two months of hell and suffering, I had finally managed to persuade a doctor to transfer Jack out of Aberdeen Sick Children's to Edinburgh Sick Children's Hospital.

We were due to be transferred on the Thursday morning so Wednesday was a day of tying up loose ends and packing up stuff.

One of the complaints I had made was re Jack's wheelchair. I had asked a nurse the very first week we had come into the hospital if she could ask someone from wheelchair services to come and have a look at Jack in his chair, as he was getting zero support due to the deterioration of his scoliosis. Every week that went by, I asked again and was fobbed off with many excuses so no one came to see us.

The day before our transfer, 8 weeks later, a nurse came over to tell us that she had phoned wheelchair services and the first available emergency appointment was in 6 weeks time!

It was the final straw for Granny Mac, who promptly burst into tears. As soon as she started to cry, I started laughing. I don't know who was more shocked, her or me! I laughed and laughed, til tears rolled down my face, my stomach ached and I thought I was going to be sick. I looked up in the middle of this hysteria to find the very bewildered faces of Granny Mac, the nurse and Val from Chas at Home looking at me like I had totally lost the plot!

The more Granny Mac cried, the harder I laughed. Through her tears she asked in a shocked voice "why are you laughing? Stop laughing, it's not funny!" This just made me howl with laughter all the more. I was totally creased up, bent double and was laughing so hard I literally couldn't breathe. Eventually I managed to splutter "you really need to stop crying cos the more you cry the more I laugh".

Even Jack thinks it's funny!

She looked incredulous at me as if I had gone mad! Then through her tears she went on a rant about how outrageous it was that an emergency appointment could take that long. This sent me into more bouts of hysterical laughter til I was a helpless, blubbering mess hanging onto the edge of Jack's bed.

I did manage in the middle to blurt out "if I had been given that appointment when we came in, I would have had it by now!" before dissolving into fits of giggles again.

I laughed like that for well over an hour and throughout the rest of the day, I would dissolve into fits of laughter for no reason whatsoever and at some of the most inappropriate times too.

Fast forward to June, when finally Jack has had his Fundoplication after two cancellations, been on continuous feed for 18 hours a day for 7 months, suffered a broken leg and severe oesophogitis, stopped breathing numerous times, suffered 100's of seizures, aspiration pneumonia twice and the countless other things that had happened in that 9 months. He was finally back to being fed into his stomach instead of  his jejunum and I had finally started to see the end of this nightmare.

After his fundoplication

After driving 4 hours to get home from the hospital I was shattered but happy to be home. Jack was still in plaster and his feeding peg was not yet a button but things were far far better.

Marion, Jack's carer was in looking after him so that Holly and I could have our tea. At 7pm we were getting him ready for bed. We had gotten most of his meds into him but when it came to putting in the last one, the peg was blocked! After trying to unblock it, I could feel the panic rising. We tried for over an hour to no avail; it was blocked solid.

I phoned Edinburgh for advice and the nurse told me to keep trying and call her back. I was shaking, crying and inconsolable. This was catastrophic because this was not a peg I could change myself and I had visions of having to get back into the car and drive the 4 hours back to Edinburgh. I kept saying to myself "no, no, no, no, no NO!" over and over. Poor Marion and Holly didn't know what to do with me so I asked Holly to call Granny Mac because in my mind, she was the only one who would understand what a disaster this truly was.

If it had been this type of peg, it wouldn't have been a problem cos I could have changed it myself!

We tried for another half hour after she arrived to unblock the damn peg! Everything we tried to flush down it, just exploded out of the other syringe portal. Marion, Jack and I were soaked. Granny Mac was trying to help but often just got in the way.  I felt like screaming! I lurched between crying hysterically and total silence! The only saving grace was that Jack slept through it all!

I called Edinburgh again and was told to take him to our local hospital. We had to hoist him back into his wheelchair and into the car. On the drive up, I was so distressed that I told Granny Mac exactly what I thought of her son, Father of the Year! I held nothing back. By the time we got up there, I couldn't breathe and was having chest pains. Poor Granny Mac was crying too as she just didn't know what to do with me

Marion met us up there and we went straight to the children's ward. We spent hours in the treatment room with numerous people trying to unblock that damn peg but it was not to be. The said we would probably have to go back to Edinburgh the next day and I told them "well you will have to take him, cos I am not going!". They tried numerous times to get a drip into him as well but his veins were crap which distressed me all the more. Bloody hell, had he not had enough? I cried most of that time with Marion getting permission to bring me cups of tea, which believe me, is NEVER allowed in the treatment room! Marion left at 11, three hours after her shift should have finished. It was her wedding anniversary too!

They managed to persuade me to sit in the parents room for a while but then they called me back because they needed to get a drip into Jack otherwise he would be dehydrated. Granny Mac was getting upset again so I knew that I was gonna have to pull up my big girl panties and just face it so back through I went. It was after midnight by then and I was rung out. I persuaded Granny Mac to call her husband and go home cos she looked as bad as me. Lynette stayed as she was going to be staying with Jack overnight. Just after 2 am we got Jack into a room on the ward. The drip was in but the peg was still blocked. I kissed him while he slept on, oblivious and went home.

I woke up the next day, feeling as if a huge weight was sitting on my chest. I ached everywhere. I rolled out of bed and saw that I had a text from Lynette saying that she wished she had good news to impart but that things were still the same.

I dragged myself up to hospital, resigned to the fact that I was probably having to drive back to Edinburgh.
Oh joy! But there was a glimmer of hope. A doctor was called and he said he probably could replace it, as it had been a week since it was put in so it should have healed and meshed now. I suggested he call the surgeon in Edinburgh to check just in case. He then spent the next hour trying to unblock the peg too, putting wire down it but the damn thing just wouldn't budge.

Granny Mac came to visit and the two of us sat with Jack.I apologised for losing it the night before and she said it was perfectly understandable!  Eventually at 1.30 pm the doctor appeared and changed the peg. When he took the blocked one out he showed us what was causing the blockage. There was a solid lump of white which turned out to be calcium, the supplement he was getting to help his broken leg heal! He had only been on it a week and a half but since it had been given with all his other meds, it had just slowly attached itself to everything until one day it became rock hard! Who'd have thought?

I was so relieved!

Ah happiness at last.....my old friend Red!

After I took Jack home, it took me weeks to recover from my melt down. I now know that it was the final straw after 9 months of hell and holding it together.

So please tell me I am not alone?