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.....

heading to Italy..

There is a very profound quote made by a mother with a disabled child that explains the feelings when you realise the child you gave birth too or were waiting to welcome into your family is not quite the one you order. Her name is Emily Perl Kingsley and it is entitled Welcome to Holland.
  We experienced everything just as she explained and have been looking for ways to re board the plane and finally land in Italy.Thanks to Dr Park and his team and the amazing physios in St Louis that gave Leo the ability to walk. Of course we wouldn't have even got there had it not been for the kindness of strangers and although we cant possibly thank all of you personally know we are truly grateful.
  Leo is now mobile, he walks almost everywhere although he does have some way to go still regarding balance and gait we know at least now he has a chance. The infection that has plagued him since our return is still there admittedly dormant at the moment, We recently had a trip to Leeds General Infirmary (LGI) and got the chance to speak to a UK doctor that has been trained by Dr Park and is hoping to bring SDR into the UK. He arranged for a MRI to compare with Leos previous one taken in March. He emailed the results to Dr Park and they agreed the infection is getting slowly better, There is a lot of inflammation there which explains why Leos' back is so sore to touch and still swollen. He did explain that although the infection is still there going in now to flush it out may well awaken it causing it to be worse than it was before, so we agreed to continue with the meds Leo has been taking. The doc in LGI is keeping a close eye on Leo and has arranged for another appointment in Leeds beginning of June just to make sure its still progressing in the right direction.  He has said if it does flare up then he wont hesitate to go in and flush Leos' back and we are more than happy to agree to his prognosis.
 As many of you are aware Leo recently was crowned Child achiever of the year by the Evening Telegraph

He really enjoyed being centre of attention yet again and loved all the clapping etc, He was given a trophy which now stands pride of place on the telly in his lounge in full view to admire . 

 I saw in the ET there is another little boy close by just starting out on the SDR route and we wish the family all the luck in the world  xx

Nothing like a nice warm bath...

This morning Joanne and Leo had an appointment with Dr Latimer at the PCH to discuss how Leo is getting on. The blood test results show that although the swelling and soreness is a lot better the bacteria levels are still high enough to need further treatment. It has been decided that Leo can try taking his meds orally for a week and then they will test his blood again to see if he can continue orally or if they have to revert back to IV. Its also been confirmed that Leo will need another MRI in 6 weeks time to make sure the infection has gone. Until then he is going to need to continue one way or another with his medication.
 Because his long line failed yesterday its already been removed and now Leos scar is no longer seeping Leo has been given permission to take baths. Never has a little boy been so happy to splash about in warm bubbly water.
So now at last we have a new kind of normality to enjoy and hopefully the memory's of Leos experiences recently will begin to fade. So now its onwards and upwards physio wise.
 We have also received notice that the final bill from St Louis has been further delayed due to staff changes. This just means more delays in fundraising, really worried the support will not be there when we need it but we have faith.

The fickle finger of hope beckons

After a weekend off from taking Leo for his daily hospital visits thanks to nanny Mandy and Farthy taking it on Joanne and Leo returned to Amazon ward today for Leos meds. After arriving at 4.20 again it was almost 5.30 before they were called through to the treatment room. Deputy sisters Amy and Laura were the ones to draw the short straw. Luckily both have experienced Leos fear and prepared really well even down to making sure Leos meds were already drawn into the small syringes. Leo opened his mouth to ask about the warm flush but before he could Laura told him she remembered he liked warm flushes and it was nice and warm ready. Actually giving the meds went really well and they managed to get them in without to much hassle.Unfortunately today's the day they also need to take blood to check how active the bacteria is. Leo was soon panicking but again they took the time to explain to him that the special spray will stop the needle hurting and although he did struggle initially he finally took a deep breath and allowed them to draw the bloods they needed. The look of relief on his face when it was over was priceless. Leo was impressed with the colour of his blood!
The consultants senior houseman came to check on Leos back and again Leo let him remove the dressings and examine his back. That said Leo wasn't impressed when the doctor gave the infection site a squeeze. The doctor did agree the site looked a lot better (after Jo showed him a picture of the scar on the day Leo was admitted into hospital). Once the blood tests come back and providing the bacteria has calmed down there was talk of the chance that Leo could be transferred over to oral anti biotic. The doctor advised Joanna they will call her tomorrow once the results are in. Fingers crossed its finally good news.....

Belts and Braces time

Well today's visit was pretty straight forward, We arrived on time and waited. We now sit up near the nurses station close to the doctors room as we have worked out they are less likely to forget about us there. After asking passing nurses 'who was doing Leos' drugs' and being told someone would be about soon probably 5 times, we heard another nurse on the phone talking about Leo and the fact no IV had been prescribed for tonight because the doctor wanted to see him and take a look at his back first. We heard the nurse beeping at least three different doctors trying to find someone to see Leo as his doctor (the one who insisted Leo was seen) couldn't be located !
When the doctor arrived (l would name him but he didn't give us his name) he took us through to the treatment room so he could remove the dressings and take a look at Leos back. He did agree that Leos back looks a lot better but Leo was flinching really badly and the swab that was taken Tuesday showed the bacteria is still active (or was then) he decided to prescribe yet another week of hospital visits and IV anti biotic.
Leos dressing was changed and we went back to the nurses station to wait for tonight's drugs. Eventually the nurses came with the tray (on which everything is laid out). Leo again asked the nurse to check that the flush was warm (he knows cold ones hurt) this she agreed was the case. We told her that poor Amy really struggled last night and she said she knew apparently Amy's hands were really bruised. We told her the doctor checking the line pushed a flush through using a 1ml syringe but Amy struggled with a 5ml one, The nurse actually listened and actually did the flushes drugs and Hep with the 1ml syringe. She has made a note in Leos notes that this is how the drugs need to go in but l am not confident Leo will get through the end of this course without the long line being removed again. I really really hope this is not the case !

Nurse Amy working on her biceps...

Well we did think once the long line was in place Leos' trips to the hospital would be more straight forward... Just how wrong were we!
The long line just is not happy letting the drugs actually enter Leos' body. Every time the nursing staff try and attach the pump to the line it only takes less than a minute for the alarms to sound as the line occludes (blocks). Wednesday night again the nurse had to manually push the drugs through after trying to use the pump, however we did leave the hospital when it was light so that made a change!
Today we arrived and fully expected the nurse to try and use the pump before resorting to manual infusion, but today the nurse listened to Joanna (and probably read the notes) and didn't bother with the pump. Today though the line was so stiff she couldn't even get the flush to work. After a few attempts she conceded defeat and advised us the doctor will need to see Leo. (her face said it all). We went to the treatment fully expecting them to remove the line and fit another cannula and braced ourselves for Leos' screams. However the doctor managed to force the flush through using a narrow syringe, she advised Amy (the nurse) that she should be able to use the line. Poor Amy it took all her strength to push the drugs through even using the smaller syringe. The tension actually made her arms shake and once she managed to get the drugs in was left with some pretty impressive pressure marks. It doesnt look too hopeful for the line to stay in place if Leo needs a further course of antibiotics so please wish us luck with the Consultant tomorrow .... 

amazing how slowly time goes by...

Well finally (and l mean finally) Leo now has a long line in place. He was sedated while the line was fitted, Xrayed to make sure the line was in the best place, His back was checked out by the orthopaedic doctor, His IV drugs were given and we were allowed to leave. Sounds fantastic huh?
Well the outcome definitely is but the 6 and half hours it took with Leo again not offered anything to eat or drink during the whole time is still ridiculous.
Leo arrived at the hospital just after 1500 today and we finally left at 2145.
We were shown to a bed in the open ward and Leo made himself comfy, The nurse advised us a doctor would be round to complete the admin needed for the line to be fitted (we had put the magic cream on his elbows in the car on the way to the hospital). The doctor did come round about 20 minutes later and completed the paperwork and talked through the agenda for todays visit. The staff nurse came round soon after with the oral sedative Leo needed in order for them to fit the line,Joanne advised her that it will not work on Leo (it was the same one they had attempted to use when Leo had botox 18 months earlier) we received the usual response of well lets try it and see, 30 Min's later Leo is still wide awake and showing no signs of sedation(apart from calling his finger an alien and singing a song about   pouring coke cola over Joanna's head)  the nurse returned and told us the doctor would be ready in 10 minutes, 20 minutes later Jo and Leo went to the treatment room to have the line fitted but once the doctor realised Leo was still wide awake a second sedative was given which luckily took the edge off and they were able to fit the line.Leo was given a really nice present for being a brave boy. Leo and Jo returned to the bed. After about 40 minutes l went looking for the doctor to find out what was happening to be told they needed to do an Xray to confirm the line was in the right place and was told it would be a few more minutes. 30 minutes later Jo went looking for the nurse and returned with her. Jo and Leo went off for the xray. it only took 10 minutes and they were soon back on the ward. As the nurse left she advised the doctor would be round soon. She was right within a few minutes the otho-pod was there and she examined Leos back, Although the infection site looks a lot better Leo is still flinching and crying out if its touched. Doctor re-dressed it and advised it would be checked again Friday before she left Joanne reminded her Leo still hadn't had his IV she said she would see what was happening. After another 40 minutes or so the staff nurse appeared with Leos IV and proceeded to hook him up (by now Leo was fast asleep) but she had difficulty flushing the line through but hooked him up and finally we knew it would only be 30 minutes or so before we could go home, then the IV pump began to bleep. The staff nurse returned and tried to restart it but the beeps kept happening, She told us the pressure the machine was sending the drugs down was too high and the line was 'stiff' so she pushed the drugs through herself. We finally left. Joanna carrying Leo who was fast asleep having had no tea and missing his friends birthday meal but at least the line is in now.

So Angry l could scream

This afternoons visit to the Children's ward was nothing short of horrendous! After waiting 30 Min's the nurse came and hooked Leo up to his IV machine, Leo asked for a warm flush (he knows the cold ones hurt) the nurse assured him it was warm and started to flush the line, Leo cried out and the nurse said its because although the flush was at room temp he could still feel it and proceeded to continue with the administering his drugs, She did keep asking Leo if it hurt as she noticed the cannula had been knocked but Leo assured her it didn't, He then went very quiet and tears started rolling down his face after a couple of minutes Jo went to fetch the nurse to check the IV and she checked his arm and here was no redness, A few more minutes passed and Leos tears were heavier, Leo asked that the bandage be put on over his cannula but the nurse had requested we leave it off so she could check it, Leo became more and more upset so finally we compromised with a tissue placed over it. This settled Leo for a few more minutes but then the tears started again and he insisted the bandage be put on Jo asked if it hurt and Leo said no don't take it out please mummy don't take it out, Jo carefully placed the bandage over Leos hand avoiding covering the cannula. Leo was obviously uncomfortable and the tears hadn't stopped so again Jo fetched the nurse. This time she noticed Leos wrist had swollen and yet again the cannula had failed although this time the antibiotics were going into the soft tissue causing the swelling, The nurse turned off the IV pump and went to fetch someone else. Leo was moved to the treatment room where two nurses tried to re site the cannula by wiggling it a little hoping it would centre itself, every minute Leo was becoming more and more upset screaming for his mum to stop them. Finally they took the cannula out deciding as there was only 2ml left it wouldn't matter tonight. Leo gave a huge sigh of relief and kept saying thank you thank you thank you over and over again he wanted to kiss the nurses and hugged all of them. His little face was swollen with crying and his wrist swollen because of the misdirected drugs.

 This is the 7th cannula Leo has had since he was admitted to hospital 11 days ago, The nurse ASKED Jo why Leo didn't have a long line !! This was something that had been agreed before Leo was discharged and then revoked before they left. So tomorrow 9 days and 7 cannula's later and fingers crossed they don't change their minds again Leo is going to be sedated and finally a long line is going to be fitted for the remainder of at least this course of treatment. What Leo has gone through in the last couple of weeks is beyond belief and the fear he had of needles has now escalated to the point where he becomes hysterical if you even just talk about them in front of him. The blame lays on the feet of Leos British Dr and his indecision regarding the best way for the drugs to get into Leos body. How l wish we had got on a flight that Wednesday and had the whole thing done in St Louis !

And the beat goes on

Well Leo was discharged Friday evening after the doctor decided that Leo could manage the cannula in his hand and just go into the hospital everyday for his drugs. That said Saturday his vein collapsed and he had to have the line resited and Joanna again asked that the PIC line be fitted but was told Leo has good veins and could get through to the end of this series of IV drugs without the collapse happening again...what do you know Jo took him back yesterday and his vein collapsed again and again he had to go through the trauma of having it resited again!
The good news is the Silver nitrate they have been applying directly to the lump in his back has reduced it and it now no longer looks so angry. Leo is dealing with the day to day stress of going to the hospital once Joanna confirms AGAIN he doesn't have to sleep there but he does get so stressed out having the cannula's fitted but then who wouldn't?
l know it could be a lot worse but watching Leo plead with his mum not to let them hurt him is heartbreaking to say the least!
Experiencing the way Joanna and Leo were treated in the U.S and here the differences are remarkable...yes the new hospital is lovely and the rooms are so much better, The staff as always for the most part are amazing its just the lack of importance put on parents opinions is so very marked. The meal system was so much better because the meals were not served by the clock more by the patients needs. I understand the reasons behind this but the casual way they just assume Leo would like tuna sandwiches twice in one day and the fact it costs so much for parents to buy food and drinks when their child is at the hospital is unbelievable and if you don't have your car there you really are held hostage to the prices. The vending machine in the children's and woman's health is exactly the same as the one l pay 25p for at work but at the hospital its £1 there really is no need for this.
OK rant over, hopefully this course of IV drugs will sort out the infection if not the doctors are happy to try a different set...this will mean poor Leo will have to tolerate yet more cannula's being fitted !!!

Leo is not the only one that roars!!

Well another day and another decision change, Seems this morning the doctors have decided to ignore Joannes requests and are looking at fitting a long line sited at Leos lower arm..meaning he will see it and will not be happy to have it touched which means Joanna will have a nightmare trying to do his drugs, Jo has spoken to the registrar and asked why Leo cant have a PIC line and the answer...there are only a few people at the hospital that fit them and there may be a wait..Jo then asked to be transferred to Addenbrookes as she was told they do them there all the time..even offered to drive there herself..response?..you will have to talk to the doctor later...so as l type Jo is once again waiting for the doctor......

a day of waiting

Well the doctors did their rounds and decided to try and do the MRI here in Peterborough. Depending on the results the next stage will be discussed. After a long morning just waiting to hear if the MRI was going ahead here or in Cambridge we got the news we were hoping for its been decided that the scan can be done in Peterborough at 2pm. We were told they would be injecting dye into Leo once they have done the first set of scans just to see if the blood flow in his back has been compromised . We were told this would take 45 mins. Well Leo has been nil by mouth since 2am and as 2pm approached he became more and more desperate for a drink trying to negotiate first for water then as he understood that wasnt going to happen changed his plea to blackcurrant. Its been a long day trying to take his mind off drinking ..strangley enough he hasnt asked for food. Once we got to the imaging centre Jo went through and stayed with Leo until the general aneasthetic took hold of him. This time it was no near as traumatic as the first MRI l guess after the SDR nothing phases Jo now. The MRI actually took 2 hours and we didnt leave the waiting area as we wanted to be there when Leo came round (no pager here just waiting). Leo came round and immediately asked for juice and quickly demolished a carton of OJ. Once back in his room he was still very groggy and still thirsty so drank and drank until he was literally sick bless him. We tried to get him to eat but he wasnt interested at all. Dr Latimer came in to speak to us and had some good news, The MRI had shown the infection hadnt affected his spinal column or his bones. The decision was made not to flush out the wound but to fit a PIC line tomorrow and assess Joanne giving the IV if she passes the assesment then Leo will be discharged with Jo giving him his drugs for the next 10 days if not he is going to have to stay in. Although Jo is confident that she can do it once she has had a refresher. So hopefully Leo will be home either tomorrow (Friday) or Saturday at the latest....fingers crossed !

and again.....

This evening Leo has been readmitted into hospital. His back is infected again to the point where his original scar has split. We have spoken to Dr Park and he has recommended that Leo has his back opened up and 'flushed' out which luckily the local doctors have agreed with. So he has had a cannula fitted ready for the events ahead, So far the plan is to transfer him to Addenbrookes for an MRI to confirm how bad the infection is and then they intend to operate there. Joanne is staying with Leo tonight so she will speak to the doctor again tomorrow morning to finalise things.
 Leo is in the new city hospital and although we really shouldn't make comparisons its unavoidable. Joanne and Leo got to the hospital at 3pm this afternoon and Leo was moved to the ward at 7.30pm in that time Jo was not offered a drink or even shown where the vending machines were in fact once we were admitted to the ward Joanne asked if Leo could have food as he is nil by mouth from midnight and the response was there maybe a sandwich left in the fridge but that she should probably go to the restaurant to buy him something to eat(although the nurse didn't really know where that was and had to ask someone else). This she did and £8 later Leo had a sandwich a bag of crisps, packet of maltesers and a ribena. They are stuck in a huge hospital now held hostage to these ridiculous prices. As Leo is being transferred in the morning and even the nurses were not sure if Joanne would get a parking ticket if she didn't renew her parking pass daily she had to take her car home and get a lift back. This means once Leo is transferred she is going to have no means of transport there at all! Thank goodness that Nanny and Farthy drive. Leo has his own room and it it is sparkling clean but Joanne was shown in and nothing was explained in fact we found the parent bed just by being nosey...its hidden in a wardrobe like contraption.
I guess we were spoilt at Children's !
Leo is in no pain but does have a temperature he is doing what Leo does best and just getting on with it..although he wasn't impressed at having his bloods taken !!
I will update as soon as l have further news

What a start to the year !!

Well Leo decided that quad sticks are just to much like hard work and has taken it on himself to follow Dr Parks' advice to the letter and walk walk walk walk walk.
The planning and excitement of November has faded away so too has the dark dismal days we had when Leo was taken back into hospital with the infection. Hard to believe three months ago Leo was basically stuck in his wheelchair and without the SDR he still would be. Its a sad case of reality that without the power of face book we may never have found out about St Louis or the amazing Dr Park. Just goes to show how the Internet has shrunk the world. So now we are taking the time to support other families going down the SDR path because when you start there are just so many questions and worries that occur and we appreciated the help we received. The fundraising hasn't stopped we are still trying to get funds together to cover the additional medical costs etc
As for Leo...well every day he takes more and more steps, his balance is excellent and his speed is increasing. Not satisfied to just walk now Leo wants to run! Nothing he does will surprise me now apart from maybe abseiling  or bungee jumping but l really wouldn't put that past him. Leo must have made a huge impression in St Louis because just the other day Dr Park mentioned him to another parent out there now and l know he is incredibly proud of Leo too.