Joshua’s SOD Blog

Day 19 – Monday 18th May 2009 – 4th Stem Cell Treatment

May 18th, 2009

We had an early start this morning as Josh wasn’t allowed any fluids or solids for 6 hours before his spinal stem cell treatment. So we managed to feed him up with a full bottle of milk, and 2 slices of buttered and vegemite toast squares just before 8:30am!

This morning, Dr Hong and other doctors came round and examined Josh. They closed the curtains, and made sure all the lights were out in the room, and the doctor flashed his pen light in Josh’s face. All Josh did to begin with was laugh! The doctor then moved the pen light towards his eyes, probably about 5cm from the eyes, and moved it left and right. The doctor then said out “He followed my light!”. I couldn’t believe it, and the doctor told me that this was very good, and that he hoped that this afternoon’s treatment would improve it even more. How exciting!!

Josh behaved very well for his electrical wave therapy today, and didn’t seem too fussed when Linda placed the cold gelled pads on his legs and arms! His standing session unfortunately wasn’t as successful! He completed about 10 minutes of standing, and then a young girl was placed in the bed next to him, and when she started crying, Josh decided to join in! After about 5 minutes of tears, Linda decided to call it a day.

We went for a short walk to the RT Mart then to get some milk and bread. It was nice to get a bit of fresh air again, as we realised that we could be stuck in for the next couple of days.

At 1:45pm, the nurses called us in to the treatment room, for an IV line to be put into his foot, for the glucose. Josh was a star, and only cried for a couple of minutes, he must be getting used to becoming a pin cushion! At 2:25pm, Josh was wheeled down to the 3rd floor, which is the theatre floor. He was greeted there by Sid, the Lead Patients Co-Ordinator and Dr Hong. They explained that they would be giving him anaesthetic to put him to sleep, and that it would burn for a few seconds, and then he would drop off to sleep, which he did. He looked so small in the big cot bed, so cute. We were told to return to our room, and that Sid and the nurses would bring him up when they had finished the lumbar puncture. Mum, Ant and I sat in the room, trying to read our books and making small talk, whilst all we could think about was poor little Josh. He was brought up to the room at around 3:30pm asleep. The nurse then checked his blood pressure, heart rate and temperature, and unfortunately he woke up. Because of the treatment being in his spine, the doctors had advised us that the chances of him suffering with the side effects were higher, and that he was to lie on his back for 6 hours, Because he woke up crying on and off for around 20 minutes, the doctor decided to give him a dose of valium to calm him down, and that he may fall asleep. The valium had the reverse effect, and Josh has been SO happy kicking away in his cot, and singing along to his music! The nurses have crept in a few times, expecting him to be asleep, and have been surprised to see him still wide awake and really bubbly. I must say its a big relief to see him wake up like this, I was dreading 6 hours of keeping him flat on his back and him screaming. He’s done 4 hours and a half so far, and so an hour and a half to go. Mum, Ant and I have been taking it in turns to sit next to the cot and keeping him entertained, thankfully Ant’s not singing along to the music!!

I’ve also just had a radio interview for Radio 4 show “You and Yours”, which the topic for discussion today was “Stem Cell Tourism”. I was asked about our situation, why we had decided to travel to China for stem cell treatment, and did we think that we’d researched the stem cell procedure thoroughly enough. They were then going to be speaking with a representative from UK National Stem Cell Network, who would no doubt be poo-pooing us coming out to China. There is also a television programme on the BBC Panorama tonight about Stem Cell Treatment, which dad will be recording for me.

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