A Very Exhausted Child

I fell into bed last night and slept like a baby so much so that I never noticed that my glasses (for reading only, I hasten to add) had somehow gotten into the bed.  Must have been when I started blogging at 5.30am after being woken up by Jack's many seizures.  I became aware of something digging into my butt cheek at about 5 am this morning. I was still dreaming while fumbling about for the offending item but it was only when I managed to put my hands on it that I woke up properly!

I was like wtf??!  I think it is safe to say they are probably wrecked, oops! Thankfully, I have a spare pair so I just shoved them onto the bedside table, rolled over and went back to sleep, chuckling away to myself.

After I took Holly to school, I went straight up to the hospital.  Jack had had 9 short seizures through the night even after all the meds he'd been given and then a further 5, the last one being at 10.45am. The nurses gave him a wash and changed him and he seemed a lot more settled and he has been sleeping peacefully since.

He even looked a better colour as he'd seemed so pale when I first came in.  Sitting there, watching him, the tears finally came.  I didn't cry for long, just long enough to kinda "let the water pressure ease a bit" and then it was over.  I did feel better for it but the real tears wont come until I get him home.

My dad popped up and sat with Jack for a while so that I could go to the hospital coffee shop to meet my friend who I had originally arranged to meet in a posh café in town but needs must and therefore we made the best of a bad situation. 

After my dad left the hospital I started reading the paper he had left behind.  Just goes to show you how desperate I was for reading material as I never read newspapers these days as they are just too depressing!  He only left a small section which included the advertisements.  I spotted a couple for German Shepherd pups so I thought I would wind my friend up a bit by taking some pics of the adverts on my mobile and sending them to her.  She is under pressure at the moment from her kids and husband to get a puppy, particularly a German Shepherd.  I didn't have to wait long for her reply which was "you can go off someone very quickly!".

I was having a good chuckle at that cos I know just how much she is resisting them at the moment.  Thinking about it, I should have sent the same texts to her husband as well, then she would not only have gone off me but she would have wished some dreadful lurgy on me too!!

Meanwhile Jack slept blissfully on, unaware that his mum was trying desperately to cheer herself up using any means necessary.

It is such a long day sitting in the hospital.  The chairs are really not comfy, it is so warm that you feel really sluggish and now that the health and safety department have gone fanatical, the place is so bland.  The magazines that used to be left out for parents are long gone, toys are now fewer than ever, there is very little decor and all because these are all means of spreading germs.  Personally I think they have gone a little overboard but hey I am no expert.

Around 3.45pm, Granny Mac appeared to take over and she was going to be doing the next shift til 10pm so that I could go home to Holly.  She is a god send.

I picked Holly up, a few minutes from our house and then I just collapsed on the sofa. I didn't have any housework to do because being Wednesday, Nancy had been in and worked her magic.  Another god send. I did nothing for about 2 hours and then I made dinner and collapsed again for another hour then I headed out to collect a single bed with my friends Emma and Mark.  I have a wheelchair accessible car so it comes in handy for collecting large items.

So now I am back home. Holly is drawing for her art portfolio, the dogs are lying at my feet and I am slowly starting to chill a bit.  I've just called the hospital and although Jack is quite peaceful, his stats are low so he has been put on oxygen again,  Oh and he has had a seizure but only a short one so I will see what tomorrow brings.

It had better be good that's all I will say lol. :)

Blue Lights

Jack managed to get home from school without needing more Midazolam.  He was asleep when I got him off the bus so I thought that he would definitely sleep this one off. Of course, my wee man had other plans and even though he was asleep his breathing kept becoming laboured and his eyes were rolling as if the seizures were still breaking through but not enough to cause his body to jerk.

By the time Marion, Jack's carer, came in he had woken up and was bright for a few minutes but you could tell that he was going to have a seizure just by the look on his face.

I left him with Marion at 5.30pm but by 6.05pm she was calling me on my mobile to tell me that he'd had two seizures in quick succession and was onto a third and she'd given him his 3rd dose of Midazolam but it didn't seem to be stopping but that she would keep me informed.  Ten minutes later she called again to say he was still fitting and I just told her to call an ambulance.

Holly and I had just met up with my dad for a meal and we were still waiting on my sister to arrive when I got that call so I just had to high tail it out of there, with Holly in hot pursuit.  We ran into my sister on our way out and quickly explained the situation and arranged to meet up a few days later. I think the news had spoiled the mood and my dad and sis bailed out too.

Holly and I could hear the ambulance sirens as we ran to my car.  That noise just strikes fear through my heart cos we have been in this situation so many times.  We met the ambulance just as it was turning into my street and the lights were flashing but the siren was off.

It took only moments for them to assess the situation and then they got him onto the trolley, with a bit of difficulty as they couldn't get it into the living room.  We had to bring his chair out so far into the hall and then four of us lifted him using his sling onto the trolley.

The I was running about getting his equipment, pyjamas, nappies, you name it and then Marion and Jack went in the ambulance and Holly and I followed in the car.

We were only in A & E for about an hour and then we were taken straight up to the children's ward.  He had another seizure after he was settled into the bed and the nurses did all their observations.  He was on oxygen and they were monitoring his heart beat and oxygen levels, fairly routine stuff.

Holly and Marion fetched Jack's stuff from the car, while I filled in forms and spoke to the doctors. While out Holly also phoned my dad cos in my panic and haste at the house I forgot a vital piece of equipment, the MAGNET! Luckily he has a key to my house so he was able to get it for me.

Emma and Mark came up for a quick visit and he did open his eyes for a little while but he was so exhausted.  Emma kindly took  Marion back to mine to get her car cos it was way past her finishing time but she really is such a star and I know she wouldn't have left until he was settled or til I was able to take her home.

They had only been out the door 10 minutes or so when it all kicked off and went into a prolonged seizure lasting nearly an hour.  It was very very stressful but the doctors were feverishly setting up a drip to give him a loading dose of Phenytoin.

Finally, at around 10pm he seemed to be at peace and that's when I took Holly home going via the take away.

I am way past being tired but I am off to my bed anyway cos I have no idea what will happen through the night.  Here's hoping the medication does the job, if not there is a few more they can try before we get transferred else where.

Fingers crossed. Now my bed is calling cos I am running on empty.

Intensive Care

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.