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Zaki’s Journey – part 2

23rd February 2018

Zaki was admitted back into Great Ormond Street hospital on the 15th January 2018, which will be his and his mum, Carlie’s new home for at least 6 weeks- Zaki had lots of assessments and swabs taken to check for infections and met all the nurses & play workers. He took it all in his stride and did really well. He had a naso-gastric tube (NG tube) fitted which was hard but he was so brave. An NG tube is a thin, bendy plastic tube (like a piece of spaghetti with a hole in the middle) which goes through your nose all the way down to your stomach. It is used to give oral medication and can be used for top up feeding. Unfortunately, the NG tube came out overnight which meant that it had to be fitted again, this was the pattern for the next two days and he had to have 4 NG tubes as there were two unsuccessful attempts and one which ended up sitting in his lung. So, it had to be taken out. This can happen and is why the hospital carry out x-rays to check for its position before it is used. So that was a very difficult couple of days and it was decided to give Zaki a rest from trying to insert the NG tube and hope that he was able to take all his medicines orally for now.

Zaki also started his course of chemotherapy conditioning to prepare his body to receive his modified cells back. He had to have twelve rounds of chemotherapy over 10 days, which is gruelling but Zaki coped amazingly well and smiled for the most part, what a brave little boy.

Following the chemotherapy Zaki had a few bad days of feeling sick and dizzy, vomiting and very tired. He is still trying to put a smile on his face as much as he can

The nurses managed to replace Zaki’s NG tube, this is a very distressing procedure for Zaki but it will mean that if he can’t take his medication by mouth or needs top up of fluids and food supplements they can be easily administered. Zaki really is being so brave.

On the 26th January the big day came and Zaki had his modified cells transfused back. Now his body just needs to start to recover and the cells need to multiply.

Zaki has had to have red blood cell and platelet transfusions to help support his body until his bone marrow starts to make his own cells again. He is coping with the awful side effects of chemotherapy such as having an incredibly sore mouth which is making eating and drinking really painful and difficult. He is having feeds through his NG tube and the doctors have decided to start him on Total Parental Nutrition (TPN) this is a way of supplying all the nutritional needs of the body by bypassing the digestive system and dripping nutrient solution directly into a vein.

Another side effect of the chemotherapy is that Zaki’s hair has fallen out which does not seem to bother him thankfully and I am sure you will agree that he looks as handsome as ever.

Now the waiting begins for Zaki’s cell counts to go up so that he can go home, this will take many weeks and we will update about his progress very soon.

With grateful thanks to Zaki and his family for allowing us to share his journey.