Days 4 and 5.....

In the madness I completely forgot that I was updating the blog.  So, I will do a kind of 'catch up'.

Day 4

As suspected I didn't really get much sleep.  Between having to adjust rates of feeds and swapping them over and dealing with bleeping pumps, Rowan decided that 2am was a good time to be awake.  He then didn't fall back to sleep until 430am.  After an hour and a half of singing hands on my laptop.  Part of me was miffed, I just wanted to sleep, but he was so gorgeous signing along and mouthing the words that i just couldn't be cross.  430am he fell asleep, and there was no point me going back to sleep.  So I just laid there for an hour or so.  At 530am I got up and showered and sorted myself out.  Packed up my room, and left, to arrive on the ward for 7am.

Rowan is so good with not being allowed to eat, he seemed to understand.  At 10am, we were called, and we went across to the new theatres in the new GOSH building.  It was all rather posh, although they weren't ready for us (even though they called to say they were ready) and made us stand in the corridoor.   Now I'm not moaning, but if you are going to make people wait outside in the corridoor for 15 minutes, you really need to get some chairs in the hallway!!  Anyway, there was a bit of a mess, as the anaesthetist and the consultant weren't told that Rowan was allergic to chlorhexadine.  They had been told most tapes, and we'd cleared some that were 'ok' luckily they double checked with me first as they would usually use chlorhexadine for cleaning before and after the liver biopsy.

He went to sleep and all was ok.  I did a 'starbucks' run and got myself a coffee and grabbed a sandwich.  He was due to come back at about 12ish and I wasn't sure if I would get out for lunch or not after Rowan was back, sometimes he's clingy, sometimes he sleeps, sometimes he just screams blue murder.

NO ONE had told anyone that Rowan's surgery had been moved.  All of a sudden, there are lots of people running around like headless chicken's.  Rowan's gastrostomy site had some 'extra skin' (known as granulation) around his tube that wouldn't go away no matter what we did to it.  So they can do a special treatment called silver nitrate and it basically burns the skin away.  Seen as Rowan was having an anaesthetic, we had agreed with the gastro team that they would burn it off while changing the peg to a button.

For those of you who don't know the difference......this is a peg tube (the one with the white triangle on)

And this is a button......

Anyway, there was no silver nitrate in theatre.  So the gastro nurse and the gastro doctor are LITERALLY running around to find some.  They had though they had a couple more hours to sort it out as originally he was going to theatre at 130pm.  Once they had run around, and got to theatre, put scrubs on, it wasn't needed anyway.  Where they had to stretch the stoma (hole) to get a 'fatter' tube (the button is fatter) in, the granulation (extra skin) was now flat.  The Gastro nurse came to tell me what was going on before I got to collect him.  She didn't want me panicking.  Basically there was a LOT of blood and lots of his tubes and buttons were covered in blood, as well as the liver biopsy site.  While she was telling me what was going on they phoned to say he was ready to be collected.

One of the things you need to do with a liver biopsy is make sure they lay as still as possible afterwards to prevent further bleeding.  The gastro nurse said no way was he ready.  It had only been 10 minutes since they were finishing off the liver biopsy.  She told me to wait as they had obviously woken him up too quickly wanting to go for their lunch.  It takes a while for the nurses to co ordinate, and get all the emergency equipment sorted to go and collect him.

When we arrive, we have no idea where Rowan is.  They failed to tell people that the new theatres don't have a recovery area, they move the children across the hall to the 'old' building.  So after a hunt, I could hear him screaming at the top of his voice.  Far from calm.  He was not a happy bunny.  As soon as I picked him up he was OK, and calmed down, and he started demanding the cannula was out.  He is very funny about cannulas.  He hates them.  Normally, they don't put them in until he's asleep and we are usually lucky in that they take it out before they wake him up.  This time they left it in.  Why I will never know.  The nurse in recovery was very reluctant to take it out for him.  I explained (above screeching) that he had IV access for emergencies, he has a central line, if they don't take it out safely he will just pull it out.  She took it out for him.  He was very disorientated and I was very worried.  He kept saying 'I need a hospital, I need a hospital, ow ow, I need a hospital' it was very strange and he's not normally like that.  He then wanted all his clothes off.  He was not a happy boy.  Rowan is normally very self conscious about having his top off.  Stripped naked and screaming we took Rowan back to his bed.  He just continued to scream.

The gastro nurse came in and was basically saying he was like this because they woke him up too quickly she's seen it so many times before from working on a surgical ward.  He wasn't at all with it, and he was a horrible colour and he just wasn't right.  He then kept repeatedly saying 'I need a nurse, I need a nurse, I need a nurse'.  It took a good hour to calm him down.  Whilst screaming the endocrine nurse pops her head round the door to find out what's bothering him.  'He's post op' she was told.  'Pardon??' 'he's post op'........then there was the look......'He wasn't due to go down until 130 this afternoon' 'well it's been done and he's back' 'did they take the liver biopsy samples' 'as far as I am aware' 'um, no that can't be right, one of those samples needs to go into silver nitrate, and we have that already, and we are supposed to do that, which is why he was booked for 130pm so one of us is free'.......I just looked at her horrified.  She RAN to the consultant and then RAN to theatre and was chasing these biopsies around.  Luckily they were saved, and are being tested as I type.

I managed to settle Rowan down and he looked like he was going to fall asleep.  I grabbed the opportunity to quickly dash out to get myself a microwave meal for my tea so that after Rowan had fallen asleep I could actually eat.  I was literally 20 minutes.  When I got back, Rowan was on oxygen he was looking pretty awful, the nurse wasn't leaving him, he was on constant monitoring he looked very grey and very not right at all.  He was on 5 litres of oxygen.  I kind of stood in the doorway and just went........'what the hell? I can't leave you for 10 minutes can I!?' he had had a minor 'blip' while I was out.  Silly silly boy.  He was ok though and a couple of hours later he was back to normal.

At about 6pm, the gastro nurse came back to check all was ok, and she had a look at his button.  It was gunky and manky and she said she'd come up in the morning to help me clean it before we went home as Rowan would still be a bit sore.  Also, she came to tell me that Rowan's gastrostomy site (which had just had the button put in) and his jejunostomy site (the other button) were both infected.  I knew they were, I could just tell.  We had been putting an ointment on his site for 3 weeks and it was still there.  And now he had grown another bug too.  So we would have to start 2 high dose antibiotics to try and 'kick it' out of his system. 

We kept him dosed up on pain relief and kept the oxygen on but near him while he slept as the amount of oxygen in his blood kept dropping slightly but it was fairly uneventful.

Day 5.....hometime...

Rowan woke up demanding he go to the 'gym'.  Had missed physio yesterday as he had his surgery.  I really didn't think he was going to be that bothered, but he was practically begging me to go.  I cleared it with the doctor, then i cleared it with the nurses and we went to the gym.  He walked into the gym, I took his shoes off and he went 'bye mummy seeya in a bit, love ya'.  I just stood there in shock and just said 'bye then dude, have fun' he went 'i do esercising' (exercising) and off I went.  I went and packed all our things up to get ready to go home.  He LOVED going to his gym by the end of the week.  We'll have to see how he goes at home!

After I picked Rowan up from the gym and sorted him out with some lunch I enquired about transport home.  As usual, there was a problem.  The doctor was still waiting for microbiology to tell us which antibiotics Rowan needed to be on.  And then they had to be ordered from pharmacy.  Knowing what I know, I knew this was going to take AT LEAST 4 hours.  Wasn't really what I had wanted to hear, but, that's the way it goes sometimes.

Last night, we reduced Rowan's TPN by half the volume.  Just to see what he does with his weight.  To see whether he will then make up extra calories with food, or whether he will lose weight or what.  He had already lost 1lb in a week, and we're not really sure why, assuming it was the nil by mouth and lack of milk and food etc.  Anyway, I was all up for them reducing the TPN.  The aim was to get him off of TPN for one night a week.  One night a week where we wouldn't have to be home by 630pm.  One morning a week where I wouldn't wake up to bleeping pumps and have to get up regardless of whether rowan was still asleep or not.  One night where I may actually be able to get a night out!  One night where Lee and I may be able to get out together as we'd just need a babysitter trained up.  Seemed like such a good idea!!

Friday morning we had problems, about 11 his blood sugar was 3.7.  That's not too bad, but it's not ideal.  I decided to take Rowan to his favourite place on Earth.  The Disney store on Oxford Street.  He had never been, but he LOVES the Disney store.  I took all my emergency bits and bobs with me.  When I arrived at the Disney store Rowan was quiet and withdrawn.  As usual in a busy, unfamiliar place.  I took him in the lift to go downstairs (he was so excited) and he whispered to me 'Mummy, I hypo' I checked his blood sugar and sure enough 3.2.  Hypo.  So I waited the alloted 10 minutes. And I asked him again, and he nodded that he was still hypo.  3.1.  So I put milk into his new tube, and gave him a sugary gel (known as hypo-stop) and he perked up. 

I asked him what he would like as a gift from Disney Store as he'd been SO brave.  And he just stood there, and said 'I....don't.....know' so completely overwhelmed!  In the end he opted for a mickey mouse that he doesn't already have, a top, a cup and bouncy ball.  Yes he's spoilt rotten.  Then I stopped at McDonald's again to get him chips to make sure his blood sugars didn't crash again.

Got back to the hospital and the general feeling was that reducing the TPN wasn't going to work.  Transport was booked for 4pm.  We went downstairs to wait for the car.  It was a little crazy, trying to work out what kind of car we'd need etc.  Then it was stuck in London traffic, then it was ok, then it was stuck.  I was getting a little edgy, knowing Rowan had already been hypo earlier in the day, and then as we edged closer and closer to needing to connect Rowan's TPN, I wasn't comfortable.  Just as I was about to take Rowan back to the ward to put him on some dextrose the driver turned up.  I had to make a decision, so decided to risk it.  I made sure I had hypostop, and the BM kit, juice, food, eveything just incase.  We should be ok.  I kept telling myself it would be ok.

Someone remind me next time not to risk it!!!  Silverstone was on.  There was flooding everywhere.  There were 3 accidents on the M1 between London and my house.  The driver told me we'd be ok.  Add an extra 30 minutes to the journey but we'd go on the A1(m) to avoid the traffic.  WRONG.  We didn't get too far into the journey before there was an accident.  The driver was horrified.  He knew we had to be home as soon as possible, and we were stuck.  Absolutely stuck.  Then my nightmare unfurled.  Rowan was hypo.  Treating a hypo in gridlocked traffic was hard work.  Then his pain relief began to wear off too and there was nothing I could do.  The seatbelt straps were sitting on his new tube and on his wound from the liver biopsy.  I started to get upset because there was nothing I could do.  The driver lost his rag, and decided we'd go through all the little roads, stay as parallel to the A1(m) as we could and just cross our fingers.

It was a very eventful journey home, I won't go into the gorey details but lets just say that next time I will not 'risk it'.  I will think twice, and I will contact that TPN or those fluids.  The driver was AMAZING.   It's a shame I never did find out his name.  His distraction methods were fantastic.  Talking about the big warehouses with Rowan and they had a discussion about how there were space ships in there with 'green aliens' and sometimes 'purple aliens'.  We made it home just before 8pm.  It took almost 4 hours to get home.  But we made it.

Now just to wait for the biopsy results.  I'm not believing that these results will show anything.  I am so used to 'normal' being the result I'm not sure how I'd react if it actually shows anything, and I'm not stressing or worrying about them.  Been there, done that, and I've learnt from experience that constantly worrying about the 'what if's' is pointless, as so many times we draw a blank.  Worrying about it changes nothing, it can not influence which way the results come back.  I will just deal with whatever happens next.  If anything.