Hugs - Day Nine - Sunday 30th Jan

Since the last blog we have been joined by Maya&Sam, as well as "Grandma&Grandad Skipton". It was a bit worrying as their flight from Chicago to St Louis was also cancelled (like ours). However, we eventually got update of their flight so knowing it was just landing at STL I headed back to the hotel. Dead excited to see them.  I sat in the lobby for the best part of an hour and every time the doors opened I sat up in expectation, Eventually  a GoBest bus pulled up and it was them. Maya was first out and we had our "railway children" moment. Sam was half asleep but clung onto me like a limpet. As good as it was to see them, I hadnt calculated for them being on UK time when I was on US time. So 2am was "fun".... I must admit I passed them down the corridor at 4:20 so I could get a couple of hours sleep.... 

Everyone was excited to get to the hospital so we jumped on the shuttle bus and headed down there. I warned the kids that Mum and Evan would be tired and that he would have all his wires in - so they shouldnt be worried about what they saw. Well - Loup looked as bright and lovely as usual and Ev was laid there, no wires, happily playing on his DS. An unbelievable turnaround from little over 12 hours previous. Hugs all round.

Next up was the first physio session. Another milestone on Evan's Big Journey. Gosia, his PT for today showed us how to move him in and out of his wheelchair. Literally a 5 minute session but he was wiped out after that. Grandma&Grandad Skipton were able to "babysit" so we popped round the corner to Applebee's for lunch with Maya & Sam. It was great to be able to do it, but a little sad that although we were together we still have to be apart. Being in the hospital is boring for the others and obviously Ev cant join in at the moment. However, it's the best we can do so we are very grateful.

After lunch, Ev had another PT session and we moved to the 4th floor this time. He was a little uncomfortable but did way better than we might have hoped just 24 hours earlier. Really proud and, touch wood, there are the signs that he is retaining his ability and spirit to succeed.

I convinced Loup that I should stay with Ev this evening and that she needs to get out of the hospital and spend time with the kids. Me'n'Ev will be fine, i'm sure Loup trusts me but she is his "mom" (well, when in Rome...) but I can see it's difficult (heart wrenching) to not be there when he needs her. I was going to say she needs to get some sleep but with a jet-lagged Sam, im not sure if that is on the cards or not.... Did I volunteer for a night at the hospital to get some sleep ? As they say here, I'll take the fifth.....

Waiting around - Day 8 - Saturday 29th Jan

To be honest, not a great deal to report today... Evan has been pretty much sedated since his Op and, although we have now been moved to the 12th floor, things are going according to the plan. It is a bit weird as, having followed the ops of other SDR kids on Facebook, we kind of know what's coming and we find ourselves recognising certain stages. We are also accustomed to the various beeps and alarms and, rather than being jumpy when they occur, we know how to respond to them. Well, so far - touch wood. Everyone in the hospital has been so kind to us. 

The plan is for his medication to be reduced over the cause of today - which may well have the impact of making him a bit grumpy - and for him to eat and/or drink something. However, he does seem very sleepy so we will need to see. We are still well behind with our sleep but we are almost "past sleeping" and with it being a nice, bright, sunny St Louis day it's difficult to think about sleeping at the moment. 

Every so often, Ev has his "vitals" checked, or he is turned over, or he needs the loo (which he calls "needing the pot"....) and each time he settles back down easier than the time before. Apparently, the next day or so will see a massive change - so there will be more to report tomorrow. 

However, today is also about our other kids, Maya and Sam who are currently somewhere over Michigan by the looks of it;

     Latitude:46-10-48.0 N,

     Longitude:83-45-00.0 W,

     Speed:506 mph (815 kph),

     Altitude:38,000 feet (11,582 meters)

     Bearing:217,

     To ORD:358 miles (577 km),

     From MAN:3,466 miles (5,577 km)

.....to be accurate.

We have temporarily split up the family unit and it will, to a degree, be put back together this weekend. The trip will be an all too brief 7 days, and we wish it could be more but of all the different combinations and permutations this one seemed the least disruptive and best in terms of getting Evan the support he needed while being together as a family. However, it's been tough (the longest we have been away from any of the kids) and there are probably tougher times to come once half of the family return and half are still here. However, we have to do what we have to do.... Skype, Facebook and Gmail will have to provide virtual hugs, kisses and long-range bedtime stories, and im sure the Yummy Mummies especially (but also family, friends and colleagues) will look after the half that returns but for a week we get the real thing. So, so, looking forward to it !!

Bit of a blur - Day Seven - Friday 28th

The last 24 hours have been a bit of a blur. Evan has been sedated for most of it but from time to time he has had to be rolled over or moved for various reasons and that has caused him a bit of distress. However, he has remained his usual self throughout. He said to one of the nurses; "Excuse me. Excuse me. I'd like to get out of here" and then "I command to go home". They all think "he is just darling...".

We were lucky in that we had somewhere we could sleep in the same room but it was very difficult as every beep on the monitors (for breathing, blood pressure, oxygen and medication levels) screamed for our attention - even though we couldnt do anything. As with 6 years go we quickly learned what was what and which to try and ignore. 

When he was upset, we tried to calm him down but it was difficult to get a decent way of hugging him, in amongst the wires and without hurting his back. Also, he found it difficult to understand that he could "just go" (to the toilet) and didnt have to be taken to the bathroom. Thankfully, he was able to sleep for most of the time. We took hourly slots to try and sleep so we managed a couple of hours each.

Morning arrived and we were told that he would move to Floor 12. Which is the regular ward - a great sign that they think he is progressing well, although the plan is still to keep him sedated for the next day or so. I popped back to the hotel to pick up a couple of things and then, shortly after I got back, he was moved to 12. It is a bit better in that we have a room to ourselves and we have some decent reclining chairs to try and sleep in. When he does wake he is a little "clingy" but he's doing ok. Tough times, as expected, but he's doing really well.

We also had chance to Skype Maya and Sam who are reunited after a few days apart and who are joining us tomorrow. Cant wait !!!

Wires - Day Six - Thursday 27th

[If you are able, please listen to http://www.youtube.com/watch?v=MPUlichsfQg while reading this.]

Evan's Big Journey starts today. The last 6 months got us here - but now it's game day. Easy to get carried away with all the fundraising "hoop-la", the planning for the trip, and the getting here and being separated from family and friends ~ but this is why we are here. So, at 5:45, we got in line at "Same Day Surgery" with all of the other families and their half-asleep kids, anxious, fearful and hopeful. Evan was prepped for surgery - by far the worst bit was getting him to take his medicine which he needed pre-anaesthetic. He even had some proper hospital "PJs" rather than the NHS unisex gown equivalent but I suspect they are american age 6, so a little big on Ev. We met a number of staff and, what seemed like only 10 minutes after we arrived, they whisked him off. 

So, once again, Ev was whisked away - just like he was on his first day. However, this felt different - we have chosen this for him - knowing that it will truly change his life, rather than save it. Lots of pressure... The hospital staff were great - they promised to ring at set times, so we waited in our private waiting room (yet more "Fresh Prince" on TV....) and although the first hour was really worrying we did get the call to say they were all set to go. Loup distracted herself with the laptop and conveying the updates really helped. It's great here, we can even keep the laptop up and connected in Evan's room. Makes the world feel so much smaller. 

And then, he was out - Dr Park came past in his usual unassuming manner to say it was all fine and we went to see Ev in the recovery room. He was a bit groggy and had an oxygen mask on but he did seem to recognise us. He even muttered something. "What was that, Evan?" . He muttered it again - nah, still nothing. Loup leant in closer "im hungry....." - well, he did miss his breakfast today. Unfortunately, he can only have ice-chips for now.

Within 20 minutes he was then moved up to CICU (Cardiac Intensive Care Unit) rather than PICU (P = Paediatric) as they had the beds (so, at least that seems to be a universal problem....) but this was better as there was a small bed we could use in the room, rather than going down to the parents lounge. 

So many people came to check on him (including a male-nurse called Brett, a Chelsea fan - so we had a chat about "soccer" - whatever that is....). Ev complained of an itchy back, but a few more meds and he was off to sleep. Which was about 3 hours ago and he was still sound asleep when I left to get a brew and write this. 

It is so evocative of his first few days, with all of the wires and machines, the drips, the beeps, different people coming in and asking the same questions and going off for chats in the hallway. Most of all the feeling of helplessness. Everyone has been fantastic, and we know he is in the best hands, but he is still our tiny little boy in someone else's hands and held within all that "stuff". I can see Loup just itching to get him out and hug him. 

Anyway, all in all, a good day - difficult to explain. He will continue to have lots of meds and intensive care over the next couple of days and then be transferred to Floor 12 later on. More updates on those stages later. 

Thanks again for all of the good wishes, has really, really helped. G'night!

[PS - If you wanted to know the significance of the music - take a look at the lyrics.]

Anticipation - Day Five - Wednesday 26th January

After a relatively quiet day yesterday, we had quite a lot to do at the hospital - so it was almost a good job that Ev woke up at 5:45... It's a bit of a shame that he will just about be back on track when he goes into hospital, especially as we will need an even earlier start tomorrow. 

Anyway, we had a quick breakfast and headed off to the hospital for a 9am videoed physio assessment. Ev was on top form, although his nervousness seems to manifest itself in quite strange ways - he keeps wanting to box with the staff at the hospital.... However, a warning that this might lead to removal of DS playing privileges calms him down. Of course, we just dont know what is going on in his head. If he feels the same way that we do, then he is coping so fantastically well. Think it has been good to see Ben and Annabelle (both post-op) so he can see that everything turns out fine. 

We had a couple of other appointments which meant that we might have missed skyping with Maya but luckily the hospital is fully wifi-enabled so we simply connected up in the canteen and, with massive help from Sue, Darren and my Mum and Dad, we managed to get 5 minutes. She was a bit quiet - but I cant imagine how it is for her - she's being really good. Sam was also quiet when we skyped him earlier. Although he always smiles when he sees Ev. Cant wait to see her and Doodle (my name for Sam) on Saturday. Think it will do Ev the world of good ~ and us! 

Even though im a bit of a geek and (allegedly, before anyone else says it) supposed to know a bit about IT im amazed about how easy it has been to connect up and use Facebook, Twitter, Mail and Skype to keep people updated. I guess these tools do get used for a lot of time-wasting but it has been so, so, valuable these last few days (months in fact) and will hopefully enable us to provide some updates to our family and friends over the next few days. That said, please bear with us if we dont get chance to update (and dont forget the 6 hour delay). 

Anyway, after the hospital appts we went to nearby "Applebees" for a spot of lunch then back to the hotel. Evan is "first up" tomorrow (which is a massive relief given that he is "nil by mouth" from midnight tonight) and we need to be at the hospital for 5:45 (11:45am UK time) with his op at 7:30 (1:30pm UK time). So, we have to be up at 4ish to get the taxi at 5:15. Which means bed at about 8/8:30. We are all a bit anxious but are sure that we are in safe hands. We are so buoyed by all of the good wishes, love and prayers that we are getting from back home. Really means a lot to us - hope you all understand that we cant reply to all but we do take time to read each one (sort of like Tony Hart and/or the birthday slot on cbeebies.....). Also gobsmacked about the number of blog hits (323 for "day 3"...!!!). Think a certain colleague of mine will be getting in touch for some tips on my return ;) #irony ~ although I know the hits are more out of love for Ev than of my ramblings - but hope they keep everyone informed. 

On that note, i'll stop for now. Need to go sort the laundry out. Some things never change..... 

Free day - Day Four - Tuesday 25th Jan

Firstly, I just noticed I got the date wrong on yesterday's blog. I guess I'm allowed to not know what day it is...

Also, I missed off a couple of things from yesterday's blog. Firstly, the team at the hospital look to reduce the spasticity (tightness) and can get differing levels of improvement. They estimate a 100% reduction with Ev. Which is awesome. Also, they think he shouldnt need his "legs" (his twister braces and AFOs) afterwards. Which, if anyone has seen them will know how much they impede him. For instance, he has to have shoes a size or two bigger than he needs, as well as trousers a size up as they are so big. Plus, he might be able to support himself so much more, such as when he goes to the toilet. At the moment he simply cant sort his trousers out so he needs help each time. As well as the headline of "walking" the little stuff will also have such a big impact in his day-to-day life.

We had a free day today so, after breakfast and skyping the kids we headed off to the zoo. We got the shuttle bus to the Metro-link and took a couple of stops to where we needed to get to. It's difficult to explain, but it looks so stereotypically "Proper American". Just like "off the telly". We then had a bit of a trek to the zoo - everywhere is so spaced out so it seems to be in the middle of nowhere. However, when we got there it looked great, although it isnt an exaggeration to say that there were more staff than customers. Probably due to the weather and being out of season. However, it is (apparently) the US' best zoo and even though we couldnt see it all, we were very impressed. We saw Orang utangs, Chimps, Gorillas, Penguins, Puffins, Grizzly bear, Tree Kangaroo, Insect House, Butterfly House, etc. To be honest, I think the lack of sleep was catching up with Ev and he was a bit tired/grumpy (the cold didnt help) so we headed back to the Metro and are now back to the hotel. It is a "residence inn" which basically means that it's a self-catering hotel so we are having meatballs this evening.

Tomorrow, we have some assessments back at the hospital, and find out when he is scheduled for surgery so will try and provide updates as soon as we know.

Three sentences - Day Three - Mon 24th Jan

On 16th April, 2004, a nurse took me to one side and said "Evan is a poorly little boy, and he probably wont make it".

On 21st May 2005, his paediatric consultant told us "Evan has Cerebral Palsy"

On 24th January 2011, Dr TS Park said "Evan, you will walk".
_______________________________________________________________________________

Quite an overwhelming day - although it sits along lots of other overwhelming days recently, so it might take a while to sink in. The whole team that work with Dr Park have been fantastic, whether it is in the past few months or when we met them today. The first port of call was to watch a video which explained about SDR. We then met with Deanne the physio who did an evaulation, and we also met James Lee who has been the contact throughout. We then met the very well renowned, and truly world famous Dr Park. Evan was a bit tired and got a bit giddy but they all still seemed to really take to him.

One thing that was confirmed (as was to be expected really) is that Evan will more than likely need the hamstring and heel-cord ops, and that is likely to be after the others have gone back. However, it should be just day surgery - so I should be able to cope with that. Will get confirmation later on.

Dr Park was really impressed with how quickly Evan moved around the room. After a run through of some exercises he then got him to wiggle his toes while holding his leg and he then said that he will walk and will even be playing sports within 12 months. In such a matter of fact way that we almost felt a bit daft for thinking it an unreachable goal. There were lots of other things to consider of course, and there will be so much work to do afterwards but it will be so worth it.

On leaving the hospital, we took a trip on the Metrolink (think part train, part tube, part roller-coaster - no, really....) to a shopping mall (The Galleria). It was a bit of an experience, to say the least, but Ev was able to buy "Wipeout :The Game" which you can only get in the US. I asked Ev what the highlight of his day was and it was, of course, getting the game - not the promise of being able to walk. Wish I was 6 again, things are so much simpler....