Laugh til it hurts

At the Sick Children's Hospital in Edinburgh they have a Drop In centre where parents and siblings can go to take time out while a child is in hospital. It's a great place and they even offer free therapies such as Reflexology and Aromatherapy Massage.

I booked myself and Granny Mac in for a massage cos I felt that we were in desperate need.

source

Granny Mac's appointment was first so I spent time alone with Jack for the first time since he had come into intensive care,  Then the physiotherapist came to give Jack some quite aggressive physio to get him to cough up some of the gunk in his chest.

suction machine for getting up the gunk

It is quite harrowing to watch but I always stayed because I felt that he shouldn't go through it alone.

So there I was, standing at the bottom of his bed, getting quite distressed as they shoved tubes down his nose and throat when Granny Mac appeared beside me. She leaned in and whispered in a shocked voice "I had to strip off for my massage!!!".

I looked at her shocked face and I burst out laughing, Once I started, I just couldn't stop! I was bent double, hanging onto the end of Jack's bed, with tears running down my face, absolutely dying with laughter which then set off Granny Mac and the two of us couldn't speak we were laughing so hard.

I caught sight of the nurse and physiotherapist looking at me as if I'd lost the plot and that set me off again! Finally though, I was able to blurt out why I was laughing and they thought it was hilarious too,

It turns out that Granny Mac had never had a massage before in her life and when the therapist left her to take her top off, she returned to find Granny Mac standing in the middle of the room with her bra and vest still on! The poor therapist was a bit confused and said "oh, are you just going to pull that down?" and "Granny Mac said "oh do you need me to take everything off!" The therapist replied "yes if you don't mind and then lie face down on the table". Granny Mac said she didn't have a clue what was going to happen to her next!!!

I am not sure whether it was an experience that Granny Mac is likely to repeat but it sure made great blog material for me.

Hi...

Sorry it's been a while but I just popped in to let you know that Jack is now in the Neurology Ward, off Bi-pap and he is holding his own now.

His breathing has improved and the seizures have calmed a little. They are trying a new medicine which is making him agitated again but not as bad. Hopefully it will pass, if not, then at least we are in the right place.

I am heading home tomorrow for the weekend and my Dad is taking my place. It's been 3 weeks since I was home and I soooooo need my own bed and some of Holly's laughter to lift my spirits.

My little fighter

Jack is now in HDU. They pushed him too hard when they tried to wean him off the ventilator and he then had a very rough few days and was put on a Bi-pap ventilator, which was a bit more intense.

They haven't tried to wean him off it at all, has been on this for 4 days and is exhausted.

The seizures have become more intense too so they have put him on a new med, starting today. So here's hoping that there is not an extreme reaction this time but if there is, at least he is in the best place.

I am hoping to get him sitting up in his wheelchair today in the hope that this helps him to clear his chest without endless suction, which is distressing for both him and me.

They have said not to expect to be home for at least another week so I just have to be patient and be guided by Jack and how he copes with everything.

Keep sending him your positive vibes.

A Quick Update

Jack is still in Intensive Care BUT he is looking a better colour and they have bombarded him with antibiotics to get on top of the chest infection.

They are still giving him some intense physio and they are now trying to slowly wean him off the c-pap machine.

Seizures have started up again but they are not too intense.

I think we may have turned a corner.

Thank you everyone for all your prayers, well wishes and very positive vibes. They are much appreciated.

Watch this space!

Running on empty

This is just a quick post.

Jack is in Intensive Care in Edinburgh Sick Kids after having well over 50 seizures. I stopped counting after 50.


They gave him so much medicine to stop the seizures from 2pm Saturday until the early hours of Sunday morning when a retrieval team flew up from Edinburgh to get him.

He was sedated, intubated and flown back down to Edinburgh at 7.15am Sunday morning. I had no sleep so my friend Emma drove myself and Granny Mac the 4 hour journey to the hospital.

He is still in Intensive Care. He was extubated this morning but is struggling to to breathe by himself due to a bad chest infection. They now have him on a C-Pap machine.

My lovely boy has been through the mill and I am hoping and praying for a good outcome.

That's all I've got for now.

A better day....yipee!

My lovely boy is a lot less agitated today. He didn't need to be sedated as much which was a good thing.

Bad news is that all that lying around meant that the mucus collecting in his throat has got infected so he now has a chest infection. They have been using a nebuliser on him a few times today and I was helping the physiotherapist get some of the mucus off of his chest. To do this I had to use the suction machine while she did the physio on his chest. It helped hugely and we discussed having a suction machine at home. I don't want one. No way, no how, no when. In the end it's not my decision but I know in my heart that he is needing it more and more.

With him lying still for, at the most, 3 minutes at a time today, I was able to get a look at the bruises he'd given himself.

He was kicking one leg with the other

his ankle got a fair pounding

I don't know how he did these ones!

His knees were rubbing together as he was so agitated

My poor boy!

He is such a trooper. It took me ages to get these photos as he was wriggling about so much! He was looking at me as if to say "what is my crazy mum up to now?!" The look on his face made me laugh. With facial expressions like his, he doesn't need to talk cos I know by his face exactly what he is thinking.

He is just so gorgeous.

Update

Jack became very very agitated Friday afternoon. He wasn't distressed or upset, he just couldn't sit still and the sweat was pouring off him.

He moved that much that he nearly slid out of his comfy chair. Holly and I had a right job trying to slide him back up but we managed it in the end. His arms were banging against the sides of the chair, his legs and feet were banging against each other and he was throwing his head back.

Putting him to bed was a total nightmare and he was half way down the bed and drenched in sweat again before I had even given him his medication! So I stripped him down to a vest and boxer shorts and took the duvet out of the bed. He didn't lie still til just before midnight. I couldn't put his overnight feed on until he was still as he would have got caught up in the feeding tube.

He did sleep for about 7 hours but as soon as he was awake again, off he went. When it came to getting him dressed, I was shocked to see how many bruises he had on his legs and arms. My poor boy. Getting him dressed was like taking my life in my hands. He kneed me in the throat, in the stomach and punched me in the face. By the time I wheeled him through to the living room, I was at my wits end. Holly's boyfriend David gave me a hug and I just broke down.

There wasn't time for that though as I'd to get Holly to horse riding. Poor Jack seemed to hit his arms and legs off of everything and getting him into the car was horrendous. It took 3 of us.

Back home, after putting him on the floor where he seemed to be safer, he got more hyper. He was moving so much that he made his way around the room! So I called the Neurologist in Edinburgh.

It was 4.15pm before the consultant called me back and we were at the children's ward within 15 mins.

It took four of us to pin him down to take bloods and put a cannula into his foot. I was practically pinning down his hip area and thighs, my head tucked in right behind his bum (cos I hate seeing them put needles in) when the consultant came into the room and asked what dose of the new medicine he was on. Thinking that he was talking to the nurse (as I'd given her all that information) I ignored him as Jack was wriggling like a snake underneath me and belting me with his arms.

When he repeated the question, I lifted my head outta Jack's butt area and caught the eye of the nurse who was trying really hard not to laugh at the look on my face. I was thinking WTF? How was he expecting me to think in the position I was in, pinning down a child who was fighting me like a tiger, battering me senseless and who had filled his nappy with a very unpleasant aroma which was filling up my nose and rendering me speechless.

As he looked at me expectantly, I realised that he did, in fact, expect me to answer so I had to get my shit together (pardon the pun) and answer him. I told him the dose but said the box of medicine was in his bag at the back of his wheelchair. He then rummaged in his feed bag with me saying "not that one, the one on the back" as he then rummaged about amongst the stuff to the front of the wheelchair with me again saying "not that one, the one at the back" getting a bit exasperated!

When he finally left, I laughed hysterically cos I think I was losing it by then!

Little did I know that he had actually been on the phone to the hospital when he came through to ask me that question and I'd ignored him! Oops.

Finally about 8.30pm they gave Jack some Diazepam and he was asleep within minutes. I left soon after.

He didn't have a good night. He slept for only an hour and was given more sedation at 4am. Today was slightly better but still he was all over the bed. He did manage an hour this morning.

Peace at last

More bloods taken this afternoon and there was good news. His kc (I think I got that right) levels have halved as they were really high which means that he isn't burning so much muscle now. He is still retaining fluid but is sweating a lot so some is getting lost there at least. They have stopped the new medicine, thank goodness.

He managed another sleep around 7pm so maybe tonight will be better. Onwards and upwards.

It just became too much

Jack is in hospital....again.

His agitation grew so bad that he was unable to sit still and was sweating buckets, so much so that I was changing his clothes 3 times in a short space of time.

Yesterday, I called the consultant in Edinburgh to ask for advice. Three hours later, the advice was: "take him straight to hospital, it shouldn't be that bad, the sweating is a worry. Once they have assessed him, they can call us back for advice".

I will fill you in on the rest later.