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.

One small step ...

December 27th 2010 is the date Leo took his first unaided steps, Just 6 steps and the boy is now mobile. His smile was as wide as the Atlantic Ocean we crossed only three weeks ago. Dr Park promised us Leo would walk unaided within the year he just didn't say it would be THIS year.

 Less than a month ago Leo was struggling to just stand upright properly and now he is starting to strut his stuff. He hasn't stopped since then and continues to stride out chanting his mantra from Dr P 'walk walk walk walk' the smile hasn't shrunk in fact if possible its grown wider and wider. He is still wearing his knee high splints and will for the next few weeks but its only a matter of time before they are replaced by the smaller ankle splints and in time just to the insoles. At night Leo is wearing full leg abductors and night splints too, The night time kit will remain in place for the foreseeable future, In fact the ankles on the night splints adjust to increase his range even more. The next issue we have is to set up his physio care in the new year to supplement the physio Jo is doing with him three times a day at the moment. Leos progress is determined by the next few months so please if you see Leo remind him to walk walk walk walk....