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Thursday, 29 September 2011

Summer Ends

Wow what a summer Leo has had, He went to Tenerife with his mummy and had an amazing time at the children's club, He loved the fact he could go off and play with all the other children with barely a backwards glance at his mum. He especially loved the chocolate painting...

I wish l could say it was a summer of laughter and progress and to some degree it was, But just when we thought everything settled down his infection came back with evengence. Seems like just when Leo can start to relax and forget about the hospital visits etc they start up all over again. He has been in and out of Peterborough City Hospital all summer having IV antibiotics and putting up with cannula's going in and out. Finally Jo reached the end of her patience and contacted Ben at Caudwell to discuss taking Leo back to St Louis so the one doctor we trusted above all others Dr Park could see Leo and give us some suggestions to get Leo sorted once and for all. Ben suggested we go see Dr John Goodden at Leeds General Infirmary ( John is fully trained in Dr Parks SDR procedure and is himself working to bring it to LGI). Leeds is a lot closer than St Louis so we agreed to go see Dr John (as Leo has named him). Dr Goodden arranged for an MRI to be done to see just how deep the infection was and it showed the infection had two major sites one near to the top of his skin and another smaller pocket a lot deeper down. Because Leo's back was actually quite calm when we saw John the first time he advised that we upped the level of antibiotics and come back in two weeks unless his back swelled up again. We stayed over the weekend just to make sure the antibiotics were working . Had a lovely surprise visit from Debs and Phil Spencer and their son Mitchell (we met them in the states when Leo had his SDR, Mitch had his a week or so earlier). In fact Dr John came to the hotel to see Leo too. We went back to the hospital Monday morning and Dr John was happy that the antibiotics were actually working. So we packed up and came back to Peterborough.
We were only back a few days and Jo noticed Leo was shifting around when he sat up and flinched when she touched his back so a call was made to Leeds and we were on our way back. This time John said he would have to take Leo to theatre and open his scar down to the first infections sight...he did say it could be the infection had attached itself to one of Leos internal stitches and it turned out this was the case. John took a great deal of time patiently explaining to us exactly what he was going to do..why he was doing it and what we could expect afterwards. So Leo was on his way back to theatre again...
Dr Goodden actually appeared back at Leos bedside before Leo did. Advised us it was as he said and that he had removed the stitches and washed the site out. He said he couldn't guarantee this is the end but to keep our fingers crossed...

and Leo came back to the ward fast asleep.
Once we got home Leo quickly got back into the routine of school physio and fun and his laughter rang out. This was the case until a few days after he got back from his holidays and he had spent a weekend in Hartlepool catching up with his friends from St Louis again. He walked and walked and walked that weekend but as the weekend ended he started to fall down and that's always the first sign something is up. By the Monday morning his back was swollen and red and Leo was very very uncomfortable so Jo took him back to Peterborough Hospital. After starting an IV and poking and prodding him for two days... The doctors agreed that the best place for Leo to be was in Leeds and again John came to our rescue and agreed to see Leo. We made our way up to Leeds and was made to feel really welcome all over again. This time John advised Leo would need another MRI and this was quickly arranged, John saw the results almost immediately and advised Leo needed to be operated on straight away and this time he would have to go deeper and remove and replace a lot more stitches...in fact he said he would prefer to remove all of them. He also said Leo would need to take high levels of anti biotic and arranged for a line to be fitted while Leo was in theatre (for this alone we love him) So Leo went off to Theatre again...this time for a lot longer. Dr Goodden had already warned us this time Leo would be very uncomfortable post op and he wasn't wrong, within minutes of returning to the ward Leos Sat's dropped and nurses came running.. it was scary but luckily easily sorted with oxygen, The drugs Leo had to stop the pain caused him to vomit so for the next hour we were playing catch.

However by the next morning Leo was upright and happy again. He had to stay in bed though and was happy to do that. His back was uncomfortable so he was quite unsettled..wriggling around. Sunday was a good day..Debs Mitchell and Debs mum came to see Leo and best of all they bought gifts.. not just any gifts DS game type gifts. Even Mitchell got away with just a handshake..Leo prefers kisses !!
It took Leo three or four days before he found his feet unsteadily again .We stayed in Leeds for just over a week the last few days waiting for a bed in Peterborough hospital Leo could be transferred to. Have to also say while we were in Leeds the Physio dept came and gave Leo physio too. The day we left Leeds Victoria Martin and Darcie Holmes...more of our SDR family came to see Leo (driving over from Mancs) it was lovely to see them and Darcie is adorable.
Once we got back to Peterborough (thanks to Nanny Mandy's excellent navigation skills) Leo was assigned a private room for the duration of his stay (turned out to be another 8 days).
 Leo completed the IV antibiotics and was discharged. Three weeks of his summer holiday had now passed. He filled the rest of the holidays playing with his friends cousins and just being Leo. He learnt to run..can now jump with both feet leaving the floor and is gaining back the balance he lost. While in hospital he managed to use a scooter properly outside for the first time too. Leo enjoyed another 3 weeks out of hospital before Jo noticed his scar was raised again and very red, Again we took him to Peterborough Hospital where they decided it was scar tissue even though it had been 5 weeks since his last operation. John got a message to us saying his secretary had called PCH and was surprised that Leo had been discharged. He asked that we took Leo up to LGI for a check up which we did and again John took the time to advise us what was happening with Leos back. We have so much trust in that man if he said the sky was Swiss cheese l think we might just believe him.
 Through all this Dr Park has been in constant touch with us and Dr Goodden and we know he is as concerned as we are. Now its the end of Sept Leo is back at school and coming on so fast. We are returning to Leeds for check ups and Jo has finally been able to order all the physio equipment Leo needs but because his back has been unstable hasn't been able to use. Wont say its all over...just all over for now.....

1 comment:

webminder@leosjourney.ie said...

Hello
Maybe you have noticed that my grandson too has a website called www.leosjourney.ie (I am the webminder). We are facing into the same operation that your Leo had with Dr Parks in 2011. We are hoping to raise enough money for the same operation at the Frenchay Hospital in Bristol as it is not available here in Ireland. There does not seem to have been any activity on your Blog since last year. I trust and hope that this means a happy ending and that Leo is making good progress....... Best wishes Yvonne