As I was watching the firework display from my window on Bonfire Night, my mind wandered back to the same time last year.
Again I was watching the display from my window but back then I was crying silent tears of relief that we had gotten through the latest trauma with Jack.
Both Jack and I had been unwell. I had Bronchitis and he had a chest infection. After a couple of doses of antibiotics he was finally clear of it just in time to go into respite for two days. Holly and I were going to Bristol with my friend Emma and her daughter Eilidh for a bit of girly shopping.
The flight was before Jack had to be dropped off at the respite centre so I arranged for them to pick him up from home where I had left him in the care of his granny.
I was pretty shattered, so was really looking forward to this couple of days away.
The flight was quite quick and we were soon shopping within no time. When we got back to our hotel that night, I called the respite unit to see how Jack was and they had told me that he had had quite a lot of seizures during the first three hours in the unit, about 15 I think they said but that now he was sleeping. I was quite concerned because Jack rarely takes clusters of seizures these days and if he had been at home I would have given him some rescue meds to stop them. The respite unit couldn't do this as it was no longer in the protocol to give rescue meds for clusters! All I could do is trust that they would take him to hospital if it got worse.
The next day at about 11.30am, I received a text from Jack's granny saying he was in hospital because the respite unit had blocked his peg. This was a regular occurrence so I wasn't too worried but phoned the hospital anyway. They were busy so it took a while to get through and they informed me that yes the peg had been blocked but that also his seizures were going a bit crazy. I asked had he been given any rescue meds and was told no and I explained that it was imperative that they gave him some straight away as the more he fitted, the more saliva he produces and the more he would aspirate. I was assured she would talk to the doctor and so I hung up,
I tried, after that, for my daughter's sake, to not worry too much about Jack as there was nothing I could really do and I knew that if things got worse then either the hospital or the respite unit would call me. As the day wore on and there was no more news I began to relax and we were having a really good time.
Later that night, at about 8.30pm I received a text from Jack's granny saying that he had gone down hill a bit and they were worried! I was quite shocked, as being Jack's next of kin, no one had called me to tell me of this latest development. So again, I called the hospital who put me straight onto the doctor looking after Jack.
He pulled no punches and basically said that Jack had had so many seizures and he was struggling to breathe so they had called in an Anesthetist who had advised quite a lot of suction to drain the fluids from his chest. He said that his chest infection had gotten worse which I knew was wrong as he was totally over it when I left him. The nurse had told me that they had in fact taken a chest x ray earlier in the day and found it to be clear.
He also said that for the moment he was stable but he couldn't guarantee that my son would be here in the morning if he carried on like this! I was stunned and very upset and he promised he would call if there was more to tell me.
I didn't sleep well that night and was woken at 7.30am by a call from Jack's granny, hysterical because they were airlifting Jack to Glasgow and she wasn't allowed to go with him. You can imagine my shock and I told her I would call her back. I was shaking when I was dialling the number for the hospital cos I knew nothing about this and was confused, upset and angry.
It was the same doctor I spoke to again and he told me that Jack's breathing had worsened through the night, as did the seizures and he had had to be taken down to theatre and intubated as he was a very sick little boy. I was crying and yelled at the lady from the respite unit as she was on the ward but not with Jack who was all alone in the theatre and I just wanted someone he knew to be there.
I called granny Mckenzie back and explained that there was no room in the plane for her as there was a retrieval team coming to get Jack..
After hanging up, we quickly got dressed, packed our stuff and headed down to reception. We got onto the computer there to see if we could change our flights from that afternoon to that morning but had no luck on the computer so we just jumped on the airport bus and hoped we would get lucky there.
Whilst on the bus, I got a call from Jack's paediatrician, Dr Leibenburg and he calmly told me that Jack was breathing better and looking a better colour and he reassured me that this was the best thing to have happened to him cos he really had been struggling to breathe on his own. I felt better after hearing that and I told him we were trying to get an earlier flight back and would keep him posted.
At the airport, Easyjet were no help at all, even when we explained the situation, they wouldn't even put us on the reserve list to an earlier flight to Glasgow as it was already full. We then went onto the internet at the airport and tried other airlines and they were going to be over £200 per person and I couldn't afford that!!! I wasn't sure if Emma and Eilidh were going to come with us and I didn't like to assume but then she said that there must be a cheaper way for us to get there, so lets try Cardiff airport and the relief must have been evident on my face cos she said, you didn't think we were gonna let you go on your own did you??
I could have cried, cos I didn't know what to think, my common sense had gone out the window and my emotions were all over the place! After trying different airlines we realised it was SO not gonna happen and I suggested hiring a car. Luckily I had brought my licence with me but not the paper part so we weren't sure if we would be able to hire a car but thank god they said it was ok, cos I think I might have collapsed by that point.
During this whole time, Emma and I had been making frantic calls. Emma to her boyfriend Mark and me granny Mckenzie to arrange for Mark to take granny to Glasgow so that Jack would have someone there when he arrived.
Emma drove as I was in no fit state to drive and we left Bristol airport about 11am. It was a long drive but it seemed to pass in a blur of texts to family and friends explaining the situation and calls to the hospital checking if Jack had been airlifted yet.
We arrived in Glasgow at about 3.30pm and got totally lost as the hospital is really hard to find but Mark phoned us and talked us through the directions until we arrived at the hospital and saw him waving frantically.
I felt sick when we walked into Intensive Care. I didn't know what to expect, how he was going to look or how I would react so when the nurse came for me I was shaking.
Nothing prepared me for seeing my wee boy unconscious, attached to machines and lines snaking out of different parts of his body. I just cried and cried and I think I was still in shock cos I couldn't understand how it had gotten to this. When I had left my wee man he had been happy and well and two days later he was in intensive care, how could this be???
Emma, Holly and Eilidh got in to see him just for 5 mins but then we were told that it was parents and grandparents only allowed in. It was really hard for me, cos Holly wasn't allowed in as teenagers carry the most germs so she had to sit outside in the little waiting room just off the ward. So I was torn between my two children, one who needed me because he was very ill and the other who needed my reassurance that all would be well.
Thank god for friends is all I can say. After Emma, Mark and Eilidh left for home, my friend Karen and her daughter Martine arrived. They live in Glasgow so they took Holly to their house for tea and brought her back about 9 so I could concentrate totally on Jack.
He spent 4 days in Intensive Care. When they took him off intubation he really struggled for breath and it was a very traumatic 24 hours of constant physio and suction and there was talk about putting the tube back in if he couldn't hold his own but he was a fighter and he held on.
It was Saturday and we were still in Intensive Care when granny Mckenzie mentioned that Jack's dad was on his way home. She had already told me that she had let him know Jack was unwell. As I have previously written before in this blog, Allan told me a long time ago that he would find out about his son from his mum and not me, so therefore I had left it to her to inform him.
Nothing prepared me for what she told me next. I asked when was he arriving in the country and she told me that he already was here. So I enquired where he was and she told me that he was in Elgin. My eyes were huge as she told me that he had landed that morning in Aberdeen and would now be home in Elgin.
I was gob smacked that he would land in Aberdeen, hire a car and then drive 65 miles in the opposite direction from where we were and go HOME when his son was lying in Intensive Care! I could not get my head round this and was totally incredulous at his actions so much so that I had to leave the ward and get out of the hospital before I screamed!! I was so so angry and speechless at this news and I just wanted to scream so I did. I ran out of the hospital, round the back where the car park was and just screamed and screamed til my lungs hurt. God knows what people must have thought at this girl screaming and kicking out at the wall, tears running down her face,
Jack deserves so much better from his dad. Later that day, he called through to Intensive Care and he confirmed that he was home. I could hardly speak to him , never mind give him the time of day so I passed him to his mum.
My sister Kay arrived form Elgin the next day at about 1pm and my sister -in-law Jacqui from Edinburgh just before. It was good to see them and they were allowed into IT to see Jack. Allan finally arrived at 4pm. Jack was just being transferred out of IT to the High Dependency ward. I didn't go into the ward while he was there but my sister Kay, Holly and my niece Sheree did. They came out about ten mins later saying that Allan had said that he didn't think Jack had looked that bad!!! Thank god I didn't hear him say that cos I swear I would have physically attacked him. Even his mum could not get over that comment, saying how maybe if he had seen him like we had he wouldn't be saying that!
Thankfully I only had to put up with the man til the Tuesday when he went back to Elgin to pack his stuff to leave for Angola. I did suggest he spend some time with Holly who by that time was back in Elgin, at school, staying with Emma.
He spent time with Holly on the Wednesday night and she had been messing about with her boyfriend and fell back and hurt her head on the stone step at Emma's house. She seemed to be a bit sore but he didn't really seem to take that on and as Holly has had concussion numerous times she was starting to worry as she had a bad headache. He chose this moment, whilst taking her out for tea to tell Holly about his impending marriage and how he wanted her to come to the wedding!
When she called that night after being with her dad, she was very upset about this news and his timing of it. I think it was just the final thing for her and she was so low, missing and worrying about her brother and myself, being away from home, it was all too much and there were tears. I felt so helpless being so far away from her and angry at the same time that he couldn't have waited until his next trip to tell her, as he wasn't planning getting married until April! I was incensed at his total thoughtlessness and as usual his timing was impeccable!
Finally Jack was being transferred to Dr Gray's in Elgin. I went home the day before with my dad and Granny Mckenzie came home in the ambulance with Jack. I had a weekend away arranged for Holly and I and I wasn't going to go but decided at the last minute to go as it was just in Aberdeen and we so needed a break. I arranged for my dad to look after Jack over the weekend in hospital so I knew he would call if there was a problem.
The weekend was good but I was really not well as although I had recovered from the Bronchitis, the dry air in the hospital irritated my throat and I developed a bad cough which I had suppressed while in the hospital, leaving when it got too bad so that I could cough up a lung then go back in!!! On top of that I was nearly at the point of buying shares in Soothers just to stop the irritation!
I took Jack home a few days later and it was very nerve racking being alone again after the support of the hospital, especially as I now had a mask which I had to use on him twice a day to help strengthen his lungs.
So there was no way, I was taking any risks by taking him out into the cold last bonfire night. Holly wasn't feeling well either so as Jack lay sleeping in his chair, we watched them from Holly's bedroom window upstairs.
Since then Jack has again been hospitalised with Aspiration Pneumonia, this time it was in March and he spent his birthday, for the first time ever, in hospital. It was a very worrying time but again he pulled through so now I don't just have the seizures to worry about, I have the added stress of keeping his chest clear!
I found out much later that the reason the hospital and respite unit failed to call me was because granny Mckenzie had told them, when they picked him up from my house, not to disturb me because I needed the break and to call her instead. Whilst I totally understand her reasons for doing this, I have since put measures in place assuring that no one can speak on behalf of me or Jack, unless I have given them written permission to do so. I would never have forgiven myself if god forbid, he had lost the fight and I had not been there with him as I was blissfully unaware and busy shopping!
There are days when I could just pull the duvet over my head and refuse to come out to play but unfortunately you can't do that when you have a child who requires 24hour care so I just soldier on and keep putting one foot in front of the other.
Words cannot express my love for this child and how amazed I am at how he bounces back after each crisis but each one takes it toll. I can only take each day as it comes and hang on tight to him and hope we ride the storm together.