After an initial boost we'd plateaued for quite a while Keira did well and her balance came along greatly but her independence didn't so for what seemed like the longest time we were stuck.We tried many different forms of physio and exercise and it all added a bit in its own way but we didn't get any real gains to move forward. Until in March we came across a personal trainer who specialised in working with kids who were Post Op. He worked with Keira and with us, he put a lot of effort into getting Keira muscles working together in the right way.
Fear was the number 1 enemy and getting Keira over her fear was the first step.
To cut a long story short Keiras fear was driven by her lack of strength, we were enabling her to stop trying so we needed to train ourselves as well.
The results are as you can see----->
28-Feb 2011 4 Months Post Op
A belated Happy New Year to everyone. Last year was an amazing year for us all so thank you to everyone who supported us.
We're now 4 moths Post Op and 3 months back in the U.K.
Keira's doing well, she's progressing daily and managing a limited number of steps unaided. It's wonderful to see but after such a swift return to health post Op we're all quite impatient to see more. The prognosis was limited independant walking between 12 to 18 months and we feel she's well on her way to achieving that.
Below are two videos one pre op and one post op, you can clearly see the improvements and please remember these are still very early days and the improvements are gaining daily.
We've been very lucky with the support we've received so far. Both Keira's consultant and physio have been pleased with her progress and have tried to support us where they are able. Keira has received an hour of physio a week from the NHS on the run up to christmas. We've had a review last week (23rd Feb) with her physio Mary and she was again very pleased with her. She's recommended that we get some parallel bars to aid her walking at home as the one of the things that is slowing Keira down is having to think about the placement of her sticks while she's walking. So something else for the shopping list!.
Keira uses her sticks in the classroom and her frame outside at playtime for speed and safety. We've been really lucky with her SNA at school, Mrs Rainbow. She supports Keira's physio program really well and works with her physio, Mary, to adapt and develop it as needed.
At the end of January we had a get together with some of the other families who'd been through the Op and some who were thinking about it. Also in attendance were two physio's from St Louis. Joan and Michael. We asked Joan to examine Keira as when we were in the US there was a question as to whether or not she'd need a secondary op to lengthen her hamstrings. Currently she is borderline for a tendon op and Joan instructed us in some other stretches that may improve this hopefully. Her left hamstring however is much tighter than they would like. Joan instructed us to wait another 3 or 4 months til she's fully back to strength and then we'd revisit it but all indications are that she will need it. It's not a huge surprise to us as we were surprised to leave the states without having it done
So looks like another short visit to St Louis in our near future. in the mean time here's how well she's getting on with her independent walking, enjoy!!!
I'm sorry it's taken so long to send out this update hope it's been worth the wait and I will try and keep the updates more frequent going forward..
12 to 14-Nov 2010
Last Days :(
We got back to the hotel and then had a last supper with the Smiths at the Hard Rock Cafe. After eating way too much food we headed back to the Hotel Bar for a couple of final drinks with all the other family's. What a fantastic bunch of people we've been fortunate enough to meet and share the highs and lows with. We had a great evening in the bar with the others and it got a bit teary near the end. We said goodnight and that we'd see people in the morning before we went off then hit the hay.
Saturday AM and Sally attempted the final stage of the krypton facton, or the last of the packing as some people call it while I took the kids downstairs for breakfast. Lots of people at breakfast wishing us well for our journey staff especially. We got breakfast out of the way and got our bags down to reception and we were surrounded, lots of people getting very emotional (not me, I was focussed on my coffee) lots of hugs and kisses, lots of tears and promises of emails and facebooking. The cab came and I loaded the bags up then went back into the hotel to retrieve my wife and children but they had been replaced by a wailing woman and two bemused children. In fact the entire reception area seemed to be filled with wailing women in the main and children trying not to show it. We said our final final goodbyes and I physically deposited my family into the cab (the meter was running!!) and off we went, the journey home!
First stop, St Louis Airport, humourless baggage attendant who insisted we were allowed only 1 bag each and demanded $50 per extra bag but allowed us to carry them onboard for free, then through the security checkpoints, shoes off, empty all bottles and remove all metal items, how do you remove all metal items on a wheelchair? After a brief panic when a bottle of orange juice Sally was carrying caused "an alert" we were able to carry on.
Then to the boarding gate where the lovely assistant allowed us to board ahead of everyone and gave us a few minutes to get settled before the masses descended. this was a nice flight except for the fact that it was a bit loud. Evin took the opportunity to get some shut eye so that he could stay awake for the whole of the next flight.
Arrived in Newark and engaged in a bit of child cruelty (fed the kids McDonalds)
before the next flight. We were a bit disappointed that the boarding assistants didn't show the same courtesy on this flight in allowing us to board first again as it was extremely difficult to get 4 bags two children and a pair of walking sticks on board a plane when everyone's trying to do the same.
Eventually we boarded and the plane took off on the last leg of our journey home. The kids did really well despite the fact that the only thing on the TV screens for them to watch was "Handy Manny" Which at 22 mins long really wasn't enough to sustain most kids on a 7 hr flight. The kids were really well behaved, apart from a couple of incidents of spilt drinks etc and Evin showed how he earnt his nickname (the terminator) by just going on and on and on non stop like a robot. As we taxiied to a halt in Heathrow he eventually fell asleep!! When we got off the plane at Heathrow we were a little bemused to find that continental had laid on disability assistance for all of us so there were 4 wheelchairs waiting for us? I did wonder how they thought we'd got on the plane to begin with? Passport control and baggage reclaim went without a hitch and we were soon heading out of the arrivals get to see Nanny and grandad and of course aunty Tara. Keira really wanted to surprise them and bearing in mind this was 1 am on her body clock she did really well to walk the last few steps to meet them.
Final little bit was the drive home from the airport and on the way we saw a few reminders of where we were.
This whole journey has been a unique experience and of course I would never wish the circumstances on anyone but if you ever do have to undergo something like this I wish you have the support around you that we have found, sometimes in the unlikeliest of places. This has been a tremendous journey and an incredible undertaking for everyone who has supported us along the way Our lives and our daughters life will never be the same again and I just want to say thank you all to everyone who has been there for us in one way or other we owe you all more that we can count. Thank you again.
This will be the last regular update on this page. I do intend to begin updating this on a longer cycle probably 6 to 8 weekly as the gains and improvements won't be as apparent in the short term. Once updated i will notify people through facebook and email etc. If you do want an update reminder just drop me an email on email@example.com thanks for listening. ;-)
9 to 12-Nov 2010
Final week of physio, final week in the states! Scary time, we're about to step out of the bubble that we've lived in for the last three weeks, about to leave the safety of the support network we have around us.
Because this was the last week of physio we really wanted to get the most out of it and to address everything that was still outstanding to make sure we had no unanswered questions before we left. Started the week with Michael, as usual a force of nature, just swept us away. we discussed with him what we'd do this week and between us we set some goals for the end of the week.
We had two goals that we were aiming for.
1, to be able to walk 50 feet while holding one hand for support rather than using any walking aids and
2, to be able to stand unaided for three minutes!!
1 we felt was achieveable but 2 we thought was unbelievable!!
So throughout the week we worked on these goals. Because she was walking with her sticks more and more the first goal came quite quickly. The second goal was tougher. Pre op Keira was unable to maintain her balance at all and could stand for about 5 seconds unaided at best. So this really was a challenge and would be a real achievement.
In physio we did more and more different activities working on different muscle groups, my favourite purely because the whole idea seemed totally ridiculous was, rock climbing. Three weeks after spinal surgery and my daughter is rock climbing, what does that say about her determination!!! The whole way through this month I have been in awe of my little girl, she has taken everything that's been thrown at her and not missed a beat. I am so so proud of her words cannot express it. She is an example to us all.
The first time she climbed the wall there are some bolt covers at the top which Michael told told her to press, at the exact moment she did that a fire alarm went off and now she thinks that she caused that!
On the Thursday we had physio at 11:00am so after that we went with the Smiths back to the riverboat to take a trip up the Mississippi on a paddle steamer! That was disappointing! Forget Tom Saywer and Huckleberry Finn, they had definately left this part of the river. There were two boats, the Tom Sawyer and the Becky Thatcher. We went on the Tom Sawyer which although was decked out to look like an old time paddle steamer didn't quite fit the bill.
"On your left you can see an oil refinery, on your right you can see a power station, a little further down you can see a barge that sunk last year and is being cut up to be removed from the water"
I am glad we went but I really don't think it's an integral part of the whole St Louis thing, and there are worse ways to spend an afternoon than steaming up and down a river on a sunny afternoon.... I don't think Tom agreed though.
Evin on the other hand had learned from his previous mistake by just handing over the crayons so was playing hard to get this time.
Friday, last day and back to the physio! This was our last ever physio session in ST Louis and we really wanted Keira to do well. We had Michael for this session but Erica was in the area with another patient too keeping a watchful eye on us. Because Sally and I both wanted to be there and because Evin had a runny nose we couldn't leave him in child prison (the sibling playroom) so we brought him along.
We started off with some filming so that the hospital could determine improvements from before the Op to now and then moved on to measuring Keira's range of movement, Michael very excitedly told us that it was minus 35, so we asked if that was good and apparently yes it was, he then went on to tell us that all spasticity had gone!! Which was what we'd been hoping to hear but been too frightened to ask, so we were really delighted with this.
Then Keira got on the treadmill and started dancing!! she was excited to be there and of course was showing off to her brother, we did a bit more standing and Keira set a personal best of 66 seconds standing unaided not as good as Michael had hoped with his target of 3 minutes but a real achievement nonetheless. As this was the last session the emphasis is on play rather than work so we did a bit more rock climbing as this was Keiras choice. At the end of the session it was very emotional saying goodbye to Michael and Erica but we exchanged email addresses and promised to keep in touch.
Next step get back to the hotel and get packed......
6 to 8-Nov 2010
Saturday 6th November.
Had a good day at the science museum on Friday so had a relaxing day today and went shopping, according to Sally this is relaxing?!?!
Because Keira had done so well on her new sticks her nanny had left us some money to buy her some shoes! We went to St Louis Mills in Hazelwood which is abot 25 miles away. When you don't have a car 25 miles is quite a challenge especially with a pair of sticks, a wheelchair a buggy or "stroller" and two children! So we took the metro to the airport and got a cab from there. The cab cost almost $26.00 so according to Sally we really had to buy a lot to make this worthwhile, I'm not sure I'm comfortable with Sally's logic but I was impressed with her conviction . Anyhoo, we got there and of course we had to buy Keira her shoes. the shoes we bought her were called twinkle toes and were basically basketball boots which have had sequins and lights spilt on them! Keira was delighted when we bought her these, I was a little less impressed, Evin demanded new shoes too, not sure what he thought he'd done to deserve them?
The centre itself was pretty huge but manageable probably about 100 shops. I bravely resisted all attempts to part me from my cash until a fleecey top in GAP called out my name. St Louis Mills took up most of Saturday so after that it was back home and let the good People at Dominoes deal with our catering requirements for Saturday night....Rock 'n' Roll!!
Sunday was a more active day, we went out with the Smiths to the Arch as the last time we went there was with Sally's Mum and Keira was too tender to be carried up to the top but this time she was strong enough.
I'm really impressed with the arch I think it looks really sleek and futuristic. The journey to the top is far from futuristic however, it takes 4 minutes to get to the top of the arch from the bottom in a metal box that bears a striking resemblance to a tumble dryer. Each car carries 5 people at a time. There are 8 cars serving the North and the South towers but it's really not for the claustrophobic. When we got to the top though, it was a pretty spectacular view of St Louis
After the Arch we tried to go up the Mississippi on a riverboat but it had already made its last trip of the day so we all walked to the city gardens. The kids were quite excited about getting back to the fountains and getting soaked again! It was about a 20 minute walk to city gardens and by the time we got there the kids were ready to burst with excitement.
Then we found out that the fountains are turned off from the 1st November. The children were not happy! So after some frowning, sulking and whining later we convinced them to make the best of it.
With no water fountains the fun ended pretty quickly and we headed off for something to eat. Evin worked his Magic with Amelie and before we knew it they were sharing a crayon!!
1 to 5-Nov 2010
What a week!!
Been a great week with physio, started on Monday with Michael who's as enthusiastic at 9:00am on a Monday morning as he is at 5:00pm on a Friday afternoon, I have to say his enthusiasm really is infectious. He's trying to explain something to you and it's like he's selling you something and I don't know what it is but by the end of it whatever it is you want to buy it. This is fantastic for Keira as she really responds well to this approach. She's happy to give as much as she receives in return. First we started off on the treadmill to get her good and loosened up then we went on to playing a game on a "Biodex" machine where she makes a line move on a computer screen, the harder she kicks the higher the line moves. She loved it and loved the idea of pushing herself to beat her last attempt.
Monday was a really good day for her. After physio we went out on the Metro to a Walmart that was a few miles away. The trains are all really clean and all seem to run on time which has thrown us completely, how are you meant to plan for that sort of thing?? Been really surprised too that when we get on the train the driver gets out of his cab and makes sure that we have a seat (due to Keira being in a wheelchair) I have to say though that this hasn't been an issue so far as people always seem to immeadiately vacate chairs as soon as we board. The Walmart was about half a mile walk from the Metro station. It was big and pretty much like a large ASDA over here apart from the addition of a range of firearms and car parts. Both of which I passed on.
Tuesday and Wednesday's Physio sessions were both with Erica and they went well too. We did a whole range of exercises to develop different ranges and some stretching exercises too. We also did a bit of writing on the mirror in foam, Sally may have gotten a bit too close for comfort during this exercise!!
After the mirror work Keira and Erica did some work on the scooter boards to build leg muscles. This was one of those exercises that Keira struggled with, this is partly why she's doing these exercises, because she's weak in these areas.
After therapy Sally and I walked back to the hotel via the university site. The university's mascot is called a Billiken and they have a statue in the grounds. it says if you rub the Billikens Belly you will have Good Luck. Well we would like all the luck we can get so we all did. Evin took the whole thing a bit further and really wanted good Luck!!
After physio on Thursday we went to the Zoo again with some of the other familys. The Zoo here is fantastic and best of all it's free so you can come and go as you please without feeling guilty. You are really encouraged to get close to the animals at the zoo. The kids love it because they can get close enough to the animals to identify them and ask questions.
Physio is becoming very "samey" now and I was thinking that this reporting would start to tail off as we're talking about doing much the same thing every day. I'm not really interested in reading the same sort of report day in day out so I don't expect other people would either.....
.....Until!!!!! On Friday Michael had a surprise for us. Sticks and splints!!! We had hoped that we would get sticks before we left but at the same time we were worried that Keira wouldn't get much time to practice on them and we'd leave here in a sort of no mans land, too competent on her frame but not competent on her sticks. Because we have to take care of Evin too now that Sally's mum has retuned home Sally did physio with Keira and I arrived to meet them at the end which was the first time I saw her use her sticks.
I understand that it's probably quite difficult for others to get excited about how she's using her sticks but you have to believe that this is fantastic for us. Her confidence in using these is amazing bearing in mind this video is one hour after the start of her session so she'd been using stick for less than an hour. Now there's no getting her off them her eagerness is ridiculous and she's constantly beaming with pride in her new sticks.
After we got her new sticks we went to get her new splints/AFO's these are fantastic they are just so well built it's amazing. We went across to the orthotics building and they were fitted within the hour. I asked the technician who fitted them where I could buy a follow on set in the UK and he gave me the details of the company and their UK distributor so that was really helpful.
Once we'd finished at the hospital we decided to go to the science centre as it's within walking distance and it was on our list oof places to visit. the Science centre is great but it's probably tailored to children about 10 and under. On a personal note I do not recommend the hot dogs!!
It has been a pretty good week all in all and we're hoping for an even better one next week.
Thanks so much to everyone who's keeping up with what we're doing and how we're getting on and of course to everyone who's helped us get this far we owe you all so much. Thank you all.
30 to 31-Oct 2010
30th October, officially the day before Halloween but the day that it appears to be celebrated. Well, when in Rome! The Zoo in St Louis is recognised as one of the best in the world and they'd laid on some stuff for halloween, BOO in the Zoo. What's especially nice is that it's free too so it really encourages you in. We went there with some other familes, six adults six children three wheelchairs three buggies one pair of tripod sticks and a walking frame. We made good use of the 15 seater minibus!!
We got to the Zoo and it was a glorious day, so hot in fact I got sunburnt. Anyone who knows me however knows that all that proves is that it wasn't snowing! But Sally also got a bit of sun too so that hopefully will back up my claim of warm weather. We got there and there were huge queues for anything Halloween related with six small children and a warm day we made a group decision that standing around in a queue all day was not in anyone's best interests so we went into the insect house which was a surprise hit with Keira. I really thought she'd shy away after the first one as she's a bit shy when it comes to flys and spiders but she tolerated them all well.
Next was the butterfly house which was amazing. you literally walk into a huge green house which homes over a dozen different types of butterflys and not the red admiral that we all grew up with these things were about the size of your hand they were fantastic just flying about freely. Keira asked if we could touch them and of course being the responsible father I am I said no it wasn't safe for them. With that a zookeeper appeared out of nowhere with a butterfly for her to hold!!! I'm not entirely convinced it wasn't a stunt butterfly. It really was a different experience, I know it was only a butterfly and not the same as walking into the lions den but it was great to see how these people wanted to let the children engage with the animals.
After the butterfly house we stopped for lunch which was a nice break and gave us time to plan our next move.
The next move turned oit to be taking the rivers edge walk which housed the big guns in any zoo's arsenal The Cheetah's the Hyena, the Elephants The Hippo's the Rhino's etc. I can't do justice to the exhibits so you'll just need to look at the photos and video below to take it all in.
After the zoo closed at 5:00 we walked back to the hospital and then got the shuttle to the Hotel. All in all we'd had a good day.
Sunday am, firstly we had to do some food shopping as we were starting to get down to having nothing in the cupboard. When we got back and unpacked we decided that we wanted some fresh air. So we went with one of the other parents to the City Gardens.
City Gardens is a relaxing park with water features which we walked through. It's not exactly designed as a play park for children more of "a breathtaking oasis" Evin had other plans however and demanded to play. Unfortunately the only thing to play with was the water fountain! This didn't end well however we're hopeful that You've been Framed will come across with the goods.
The other family in the pictures are the Smiths whose son, Oliver had the operation on the same day as Keira. Oliver and Keira have really taken to each other which is really nice. We later went out for dinner with them.
27 to 29-Oct 2010
Wednesday 27th Keira had therapy with Erica. Erica tried a couple of different treatments to get Keira involved again. I'm pleased to say she was pretty successful. We firstly started off with the treadmill as usual and Keira was determined to prove how strong she was getting. So we did two sessions of three minutes walking forwards and then two sessions of two minutes walking sideways. Sally and I were pleased with how Keira approached this and her attitude in general. Next Erica took her to one of the side areas and got her to play with foamy soap on a mirror as part of a stretching exercise. Keira really liked this cos like all kids she loves getting messy. She's still showing some weakness in her right side which we're working on.
After the mirror play Erica got Keira playing basketball, I was disappointed to realise Keira has inheirited my sporting prowess. Poor child. She enjoyed herself though and got a good work out at the same time.
After the basketball session Erica then took Keira to the "Total Gym" to get her to do squats and build her leg muscles. On Monday and Tuesday Michael and Erica had tried Keira on the TG with no success as she'd complained of back pain and had to get off so we didn't hold out much hope for today. Erica was very firm and persistent without being harsh. She managed to convince Keira to give it a go while all the time letting her know she could stop if she was really hurting. Keira managed 20 squats on the total gym which was 19 better than she'd managed the previous two days combined so we were really pleased with that.
Thursday, Sally's Mum Sue returned home this morning. We didn't have physio til 2:00pm so me and the kids had a lazy morning til Sally got back from the airport. Then we went to the hospital and had lunch before Sally and Keira went to physio and I took Evin to the park. Keira did really well today and we were pleased as we were expecting her to be out of sorts as she's very attached to her Nanny but was very philosophical about the fact that she'd see her again in a couple of weeks so that was good?!? Why can't adults be as grown up about these things?
Physio was great with Keira walking on the treadmill forwards and sideways and for the first time in my knowledge, walking backwards!!
Friday we had another session with the famous Michael. Halloween is quite a big thing out here and so many people had made the effort to dress up and were handing out sweets it was really nice, almost like the Christmas spirit in October. Michael as I'm sure you can imagine from someone who's chosen a profession working with children was no exception. This was an excellent session, Keira really worked hard. We also had two people attending from the NHS to observe the processes and procedures that they use out here with the intention of implementing them back home. They were amazed with Keira's progress. They made me very proud when they said that one of the things that seemed to have gotten her so far so fast was her attitude and her general sunny disposition.
Keira did lots of of different exercises today and really surpassed our expectations. She really reacts well to Michael's coaching mainly I think because he has a real mischevious spirit like she does and they really do feed off of each other.
Keira started off with the treadmill then moved on to walking a straight line then back to the total gym where she challenged our visiting doctor to a competition. Keira managed 50 squats!! This was fantastic bearing in mind that on Tuesday she couldn't even tolerate lying on the equipment! After all this work we resorted to a little play.
Keira cycled the bike all around the 4th floor of the hospital into the lifts down to the 2nd floor and then did a circuit of the two hospitals across the walkways and back again, beaming the whole way.
Keira had a bad night, we had what the weather man on his "futurecast" described as a "potentially historic storm" she woke about 2:00am complaining of back pain. I'm hoping she was just frightened of the storm and needed an excuse to call us. Either way she didn't get a great nights sleep and when we went to physio today with Erica, she was out of sorts and really not playing ball.
Today was definately a step backwards from yesterday but yesterday was a definate high so I'm hanging on to that.
After physio we went to the Galleria Shopping mall which is pretty huge but we were quite unsuccessful. not a lot to buy :( however we did manage to add teryaki chicken to Keira's will eat list so not a total waste today.
Physio was at 15:00 on Monday with Michael. I'm pleased it was so late because Michael has way too much energy and enthusiasm to deal with while nursing a hangover. The Smiths weren't so lucky their session was at 08:00am.
We started the day by going to the Arch. The Arch is the tallest US monument and so we felt it was worth a visit. it's right on the Missisippi and was a nice morning so after a week of being indoors we really appreciated a morning of being out in the fresh air.
The Arch is a pretty impressive bit of construction and especially good when you consider it took just over two years to build. it is a pretty Iconic image and to be honest it's difficult to take a bad picture of, well that's what i thought until Sally took a picture of me in front of it. Hmmm I may be a medium in the US but I'm still XL in the UK :(
Met with Michael at 15:00 and to be honest Michael seems to be an example of the theory that if you behave positively and have a positive outlook positive things will happen. First thing he did was fit Keira for a night splint and as he talked to us and her about it his enthusiasm was infectious. Asking a five year old to wear a tight piece of rubber on her leg over night was never going to be an easy sell but he managed it in spades!
Next we moved on to stretches that we need to perform on Keira to improve her mobility. Next her got her working on a treadmill. This is 6 days after spinal surgery and she's walking on a treadmill!! I'm absolutely stunned by the team here they're so lucky to have the environment that they have that allows them to do the job they love and gives them the support they need.
Keira managed three minutes on the treadmill before having a break then another three minutes, then two minutes walking sideways then another two minutes walking on the other side.
As I said earlier Michaels enthusiasm is infectious and we were all getting very excited, in a moment of weakness I high fived him :(
The session was really good and it seemed to be miles ahead of where we were on Saturday, Sally and I left that session feeling really bouyant.
We celebrated with dinner at TGI Fridays and then went home for an early night. (I had the steak and ribs, it was really good)
Discharge Day !!!
This was our last day as an inpatient! We were due to have a physio session before we left and get our physio schedule for the following three weeks. Physio was scheduled for 08:30 am and we wanted Keira to have eaten first so we planned for a 7:00 am wake up. Keira had other ideas and had us up through the night for a variety of different minor emergencies. So when 7:00am arrived the last thing Sally and I wanted to do was spring out of bed/sofa!! But up we got and started to get ourselves ready. It's amazing how much stuff you accumulate after a week in hospital. Apart from the usual stuff we were carrying home different types of medicines and a nebuliser for her albuterol. all was going OK until we were about to go to the restaurant and a nurse grabbed us to do our discharge paperwork. Curse her efficiency!! This was eating into my breakfast time.
it didn't take very long in the end and we were on our way down to breakfast.despite being 5 days post op fromspinal surgery Keira had the full english. bacon sausage, egg, toast the only thing that was missing was a mug of strong sweet tea, she makes me so proud sometimes.
08:30 am and we met Deanna at the therapy gym, Deanna first examined us on the Monday of our assesment and was really pleased that they did the op despite Keiras cough. She told us that children from the US who she'd have said were in better physical health had been turned down in the past. The reasons for not turning us down were partly due to how we were funding it. The american families were in the main being bankrolled by the insurance companies and obviously any delay in our schedule was a direct cost to us. but at the same time they always put the childs wellbeing to the fore.
Deanna was really pleased with how Keira was now which made us really happy. Obviously we were happy before, but to hear a professional confirm what we were thinking especially as she'd examined her pre op less than a week earlier really does take doubt away. We did a little paperwork and then got our schedules for the next three weeks. Our physio was to be managed by Michael and supported by Erica. We were pleased with this because we'd met Michael and had a lot of confidence in him. One thing that has become clear in this past week is that the operation itself is obviously extremely important but without the proper physio to support it, its not enough.
We caught the shuttle back to the hotel and crashed out. We were discharged the same day as another family, The Smiths, Matt Tracy and their son Oliver, who did the same. Sally's mum, Sue, who'd been taking care of Evin for us while we were in the hospital spent a little time with us when we got back then took him out for a walk so that we could try and get some degree of normality back. Sally went and crashed out in the bedroom for a bit while I tried to get up to date with everything else.
A family from Ireland who the Smiths and us had been corresponding with and are having the op this week had arrived at the Hotel on the Saturday night. On Sunday afternoon we took them into the town so that we could stock up on supplies now that we were back at the hotel full time. In the evening when we got Back it was my turn to pass out for an hour or so.
Some of us agreed to meet in the bar for a drink that evening just to let our hair down and relax. We probably had one or two too many and it was a slightly later night than we'd have liked to have had in retrospect but it was good to be able to signal that we'd come through this part unscathed and raise a glass to the next stage.
23 -Oct 2010
Keira slept til gone 08:00am this morning and woke up in a much better mood which was good and really made a difference to everything. First stop was physio at 10:00 with Robin. Keira was still a bit cautious but much better than yesterday. Her session followed Oliver's session again and we met him and his parents as they were leaving. Oliver and Keira have really taken to each other and that's helped a lot as well as they seem to try and challenge each other to perform.
Robin was Keira's physio today and she was really good, I really believe that you have to be a certain type of person to work with children in an environment like this and Robin and Michael are just perfect for this.
For her second session since her op we think Keira tried really hard and was very supple. Robin tried to get Keira to walk in her frame for her but it was a bridge too far I think.
In the afternoon session we did a lot of stretching, exercising and a lot of play therapy. Robin gave us some stretches and exercises to do in the evening with Keira ready for our next session on Sunday morning (Discharge day!!!!!!).
That pretty much wore Keira out so we went back to our room to rest before dinner. Keira wasn't much in the mood for resting so we did a Halloween scavenger hunt around the ward then she went to the library with Sally. Within ten minutes Oliver had called around looking for her so he went off to the library with his mum looking for Keira and Sally. This was great cos when they caught up with them they then went to the roof garden for a bit and I managed to fit in a nap!
When they go back we ordered Keira's dinner, chicken nuggets, french fries and a strawberry milkshake. The hospital has a service called "Dining On Call" which is basically room service for children. you decide what and when you want to eat, it's an incredibly simple idea and just ensures that kids are more likely to eat a meal in hospital than not.
After that we decided that Keira was officially exhausted so straight to bed where she watched TV, did some school work and signed the wonder pets really badly before falling soundly asleep 3 and a half short hours later!!
Next Physio session is at 08:30am on Sunday morning then hopefully discharged about 10:00am
Today is the day that Keira is able to get out of bed! The physio was scheduled to arrive at 09:30 am to help her up and show Sally and I how we could lift her and manipulate her. We knew that Oliver Smith had the physio coming to him at 09:00 am so expected her to be pretty prompt. Keira was excited at the prospect of getting up out of bed but also very scared that any movement would be painful. So we were counting down the minutes to 09:30 but when Beth did arrive Keira was too scared to let her touch her. Luckily Oliver and his family came along too to see Keira and that bit of peer pressure worked in our favour.
Keira was pretty scared of how much I think she thought it would hurt so really resisted every time Beth tried to move her. She wailed when Beth tried to turn her despite the fact that we were all 100% certain Beth did not hurt her. Eventually Beth's persistence, Oliver's goading and our reasoning finally won her over, well that and the fact that we weren't taking no for an answer.
when we finally got her out of bed she was an interesting sight.
First Decent scale shot of my Scar
Beth & Mum Plotting!
waiting for my driver
Once she was out of bed we decided to take her to the rooftop garden because it was a nice day and it was good to get some fresh air
She was still a bit out of sorts and so we didn't push it too far, Beth recommended that we should have her out of bed for at least 30 mins but less than an hour so we stopped by the Library and went back to our room after about 30 mins.
This is the roof garden even though it's October the temperature was still in the 70's
On the Roof Garden
Me and Bedtime bear taking in the sights
Enjoying the roof garden
Enjoying the day.
The time out on the roof garden really wore Keira out only 30 mins but 30 mins that really drained her. She went back to bed then and stayed there til her physio session in the afternoon with Michael.
Michael is world famous in the world of SDR Physio and it's obvious why he's so successful with the kids.
Keira was full on not willing to play ball when he arrived at her room. He made a deal with her that every time he hurt her he got a point and every time he didn't she got a point.
The game ended up 17 - 2 to Keira!
We went to the physio gym on the fourth floor for our session with Michael. I don't think there are many physio's in the world who wouldn't be jealous of these facilities.
20 & 21-Oct 2010
Maria finished at 7:30 pm on Tuesday night and was replaced by Jessica who saw us through to 7:30 am on Wednesday morning, she was then replaced by Abbie. Everytime one of the nurses checked in on us they asked if we needed anything, we can't fault the level of care we've received here, everyone has been fantastic and if they can't help you they'll find someone who can.
At about 10:40 am Dr Park and his team came by to say hello and see how Keira was doing, he was pleased how she'd done with her BP stabilising and her general level of comfort so was happy to discharge her from PICU.
At about 11:15 am Abbie informed us that there was a room available on the 12th floor ( the Inpatient Unit) and we would be moved up imminently. by noon we were on the 12th floor and in our room.
The room itself was quite nice, it was set up for one person with its own toilet and shower. There was a large sofa area built into the window wall which transformed into a bed area that Sally and I could sleep on, it would have been ok for one person but two has been a bit of a squeeze, even with my racing snake physique!
We had a disturbed evening and night mainly due to the coughing and Keiras oxygen levels. The nurses kept trying to improve this by setting up an oxygen tube that was blowing oxygen directly into her face. This was great as it sorted her O2 out immediately unfortunately her levels fell once the tube was removed.
This was pretty much the course of events all day Wednesday and Thursday. Thursday night into Friday morning was particularly bad for two main reasons.
Firstly they're weaning Keira off the Fentanyl which is obviously making her more aware of the pain she's in. It's worth noting that as a pain killer Fentanyl is 100 times more potent than Morphine so not an insignificant drug.
Secondly, Sally and I are both finding it difficult to be as upbeat and positive as we were at the begining of the week for a number of reasons, 3 nights of low/no sleep have taken their toll, having your child in a lot of pain because of a decision you have made will always be hard to bear even when you feel 100% that this is the right decision and of course Keira's general mood is also feeling very negative so we were struggling into Friday morning.
19-Oct 2010 - Continued
Keira was taken into surgery at 08:12am. Sally and I were then shown to a private waiting room. The room was 10' by 12' with a sofa a tv and a phone.
09:00 am Ann phoned from the operating theatre to say that Dr Park had just begun the surgery and she would call back in an hour to give us an update.
10:00 am Ann called again to say Dr Park was about to begin severing the nerves. This was the point of no return, dry mouth, sweaty palms again! Ann promised to call back in the next 60 to 90 minutes.
11:00 am Ann called once more to say Dr Park had finished and was closing up and would come to see us in the next 30 to 45 minutes. We would be taken to see Keira then in the next 30 to 45 mins after that in the recovery room.
11:35 am Dr Park glides into the waiting room, shook our hands and says, "The surgery went very well, I'm pleased with her" (these should always be the first words out of any surgeons mouth, don't start explaining the highs and lows of the procedure, don't ask how we are, The surgery went very well!! that's what we want to hear first and foremost) he told us that he was pleased that he was able to carry out the surgery despite his concerns over her congestion the previous day.
Dr Park then explained that there were three other surgeons in the room observing. One from the UK, one from Spain and one from Brazil. He's been carrying out this surgery for over two decades and only now are people starting to take notice. We feel very lucky that we have been able to help our little girl have a chance of a normal life and we want others to have that too. Hopefully more surgeons and health authorities will take notice and investigate this treatment. Once he'd answered some questions he tells us that he will see lots of us in the next couple of days, wishes us well and leaves.
12:10 pm phone rings again and we're told that Keira is in the recovery room and we can go see her, almost 4 hours to the minute. 4 hours that will change her life forever.
If you're feeling drained by all this, imagine where we are, and it's only just gone noon.
We go straight into the recovery room where we're met by Dr Rushing and Ann, the nurse who's been keeping us informed of her progress. Keira has been brought round to make sure she's ok then been allowed to drift back to sleep. Together we all go to the lifts to take her to the 7th floor which houses the PICU (Paediatric Intensive Care Unit). We go up and in. Sally and I are feeling a bit numb but very positive. This is the culmination of over a years effort to get to here. The plan is to keep her under observation here for 24 hours before releasing her to the ward.
The whole time Keiras' cough kept being brought up as an issue Sally and I knew it wasn't as bad as everyone else thought and we just wanted to move away from it. We were about to find out what the real issue was.
When we went to the PICU Keira was unconscious and she was expected to sleep for a lot of the next 24 hours. In the PICU there's one nurse for every two patients. Our first nurse was Maria who explained the rules of the unit and how they were monitoring Keira. Keira was attached to a machine that measured Heart rate, breaths per minute (resps), Blood pressure and her O2 saturation. These were OK except for the O2 saturation which was at high 80%'s when it should have been high 90% and her BP which was quite volatile, this seems to be a genetic thing as when Keira was born Sally's blood pressure was like the lottery, you never knew what number was coming next!!
To try and stabilise her BP they infused her with almost a litre of saline in 24 hours. In 1 hour her BP was taken 4 times and gave the following readings!
eventually after about 20 hours it stabilised and we all calmed down.
The bigger issue was the O2 sats which were directly related to her congestion, to try and clear this congestion the respiratory specialist tried an albuterol treatment, this didn't sort out the problem so after a couple of hours they tried an epinephrine treatment again no success so albuterol was tried two more times. before finally accepting that this was something we would have to tolerate and control with a steroid delivered through a nebuliser every 6 hours.
Keiras slight cough remained as a slight cough, however when you're horizontal the whole time it's near impossible to clear it and of course the convulsions on a fresh surgical incision are quite painful. The pain of course has been making Keira cry uncontrolably which has been reducing her air flow and making her cough! Catch 22!!
So all of a sudden we realised why everyone was so bothered by the cough !
The PICU isn't exactly designed as a place for overnight visitors and in fact the rules state that visitors cannot sleep in the rooms. Through a combinnation of Keiras' age and the fact that we were almost 5000 miles from home earned us a blind eye from the staff. Which we were grateful for but it was possibly the most uncomfortable nights sleep either Sally or I have ever had.
13 months of working, researching, planning, praying, fundraising, phonecalls, emails all leading up to today. This is what we've been doing it for to get to here today.
So why does my stomach keep doing somersaults?
Cab arrived at the hotel at 5:35 am, we got Keira all wrapped up in her new fluffy dressing gown and her fleecey princess blanket then we were off.
I am so proud of her she never once said she was frightened or didn't want to go or anything that would make it harder for Sally or I to go through with this. Got to the hospital and were met by a team of reception staff who at 6:00 am were very bright eyed, courteous and helpful as we've come to expect lately. Went through the admin for 10-15 mins and then got taken to a waiting room.
The nurse put Spongebob on the TV for Keira and got her settled, Then Melissa came around to say "Hi" and go through the details again.
Then one of Dr Parks team came round with a black marker and drew on her back. Starting to get even more real!!
Then we had her anaesthetist, Dr Rushing come across to pay her a visit and listen to her airways. She wasn't as happy as Dr Shrock and ordered a chest X-ray, then she began talking about trying too hard because people like us have travelled so far etc and I truly believed that she was setting us up to say "not today Keira".
Just after 7:00am "Tyler" a child life supervisor came to see us with his Ipad. He showed Keira pictures of where she's be going, what the doctors would look like in their scrubs and masks where the recovery room was what it would look like etc. Basically as much as he could do to make her and consequently us comfortable. We then got a choice of flavoured gasses that she could have, she chose strawberry.
Portable X-ray machine turned up and Keira was photographed. Dr Rushing promised she'd get back to us as soon as she could.
Keira's nurse then came in with the pre op medication which disorientates the children and also acts as a kind of memory suppressant so that she shouldn't remember too much about this. It also makes her behave as though she's had a bit too much to drink so within 5 minutes she was singing and laughing at the telly and rolling around her bed. It was a really welcome break from the tension we'd had all morning.
Just after 08:10 Dr Rushing came back and gave us the thumbs up we were cleared to go. at 08:12 we kissed Keira goodbye and she asked us where we were going this was the only point we stopped dead in our tracks. I said we're just going to speak to the doctor and we'll be there when you wake up.
She was then taken in to surgery and Sally and I both collapsed.
Just arrived at the hospital
got a bed again
smile for the camera
waiting for my nurse
in my new PJ's
me and the bear
waiting for the X-ray
hmmm the pre med's kicked in
Look I can balance this on my nose!
X marks the spot
look I really can!
Post Op and out for the count
being given another dose of albuterol
The big day. Today was the day we found out it was all true and not that there had been a huge mistake. Keira was examined by a physio, (Deanna) and Dr Park. All was very positive, he believes that Keira may require further orthopedic surgery but won't be certain until a couple of weeks post op. One concern he had was this cough that's been lingering, So he sent us to the same day surgery unit where the anaesthetists are based to get their opinion he also decided to push her back to the second surgery of the day as a precaution.
This was awful, second surgery meant keeping Keira without food til noon, anyone who knows Keira knows she doesn't function well on no food. (just like her mother) But this was still better than postponing it, as had also been raised as an option. I'm really pleased however that when we were discussing the option of postponment Dr Park was considering the various options such as a late evening surgery or a weekend surgery to ensure that she got the surgery she required.
So we went to the SDS unit and waited and waited until Ellie came to examine Keira and do her paperwork, After Ellie, Melissa came and assesed Keira and she then called Dr Shrock, who I think is head of anaesthiology. Dr Shrock didn't believe there was any real issue, yes she had a cough but it was in her upper airways not in the chest so shouldn't be a major risk. Also the number of children this time of year who have no coughs and sneezes is pretty minimal so there is a trade off. Dr Shrock then booked us in for the morning surgery we said that Dr Park wanted to go for the later one but Dr Shrock said it would be better for Keira to be earlier rather than later as he didn't forsee any issues with the cough. This was what we wanted to hear but obviously not at the cost of Keiras safety so we were really pleased that this was Dr Shrocks opinion.
Next we needed one final X ray that hadn't been carried out in the UK and we were done.
So back to the hotel about 4:00 pm where a few of the other familys had been sweating it out on our behalfs, Tracy valiantly had 4 glasses of wine for us, what a true friend.
That evening we went to Tuckers for dinner and then home for bath and bed before the really really big day !!
Did a quick recce of the hospital today just to get our bearings. The pictures are of the radiology department. This is really how a childrens hospital should look. Xbox, play areas plasma screens, lots of bright colours etc.
After that we took a walk to the Zoo, not my best idea as the temp was in the 70's, Fantastic zoo so well maintained and just huge! Need to spend a few days to take it all in.
In the evening Sally and I got some quiet time together and went to the Hard Rock Cafe for dinner.
The restaurant at childrens hospital
The entrance at childrens hospital
Ventured out to a supermarket, (Culinaria) and Met Jen Cairns and Hayley Leonard and their two kids who are three weeks post. That was really great they're fantastic kids and you'd never know they were so soon after major surgery. That really pleased us all and put some fears to rest.
In the evening the reception staff had some tickets to the Circus that was in town, Ringling Brothers and Barnum and Bailey we got there and it was quite dark and noisy so we thought this wouldn't go down well but Keira and Evin really took to it and Keira said "That was the best thing I have ever seen!" High praise indeed.
Arrived at the Hotel about 6:15 pm. 20 hours of- "are we there yet", "I'm thirsty", "I'm hungry", "I need the toilet". Honestly Sally's mum can be really hard work!
The kids on the other hand were great they really took it in their stride.So pleased they didn't make it more difficult for us.