Good news on the medication and kidney function!! Theo seems to have picked up loads in the last week or two and his stamina is back! So relieved! Just shows how wonderful modern medicine is once again. His kidneys are coping and so we are relaxing a bit more.
Because he's picked up, we have re-discussed the idea of him being a part of the stem cell therapy trial (as mentioned before) and it is going ahead on Monday next week (Mon 11th October). There are still last minute reasons that may occur that will prevent it, as with any surgical procedure, but supposing it does go ahead, this is what will happen.
Theo will be under anaesthetic and will undergo a cardiac MRI. This is to obtain the most accurate and detailed images of his heart tissue, so any changes can be measured against it later on. He will then have bone marrow biopsied from the back of his hip bone via a long needle. The bone marrow is taken to the lab for processing and the stem cells will be extracted and prepared for launch!
The next stage is when the stem cells are injected directly into his heart via a catheter in the groin. The catheter is a long fine tube, inserted into an artery or vein in the groin and passed through the large main vessels into the heart.
The main risk for Theo is collapse under anaesthetic, it will put a lot of pressure on his heart and system function but we are assured that only the best consultant anaesthetist will be involved and if any reason to halt or cancel the procedure arises, then it will be. The catheterisation runs a risk of occluding the vein/artery but this is not a major problem. Obviously bleeding and bruising are an issue too (he will bleed and bruise), as well as infection but we anticipate these to be truly minor issues. The bone marrow biopsy also has side effects of pain and bruising around the site.
For all our concern that we may be treating Theo as a guinea pig, the possible benefit if the cell transplant were to work..it is not worth us getting over excited but the trials on adults have shown promising results, with improvements in overall heart function, by small percentages. We view this potential gain as sufficiently significant to make this worthwhile. Anything that helps his quality of life or means delaying the inevitability of a transplant is a good thing.
On the other hand, it will be a very stressful 24-48 hours and I would like people to remember that if things were to go wrong it would be very difficult indeed. We are comforted by the fact that Great Ormond Street is a transplant centre with some of the best heart failure specialists. There is access to Berlin hearts and ECMO also.
All in all, wish the little man luck!
7 comments:
I just wanted to say that I will be praying hard for Theo in the build up to and hopoefully if all goes ahead during and after the procedure as well. He is now on my churches prayer list and Mum's too. If I could do anything more practical I would and if you need anything I am always here. I am thinking of you all and as usual I am in awe of your ability to cope and survive, (something I think Theo has definitely inherited!) Love to you all, L.x
Will be thinking of you all and keeping everything possible crossed that all goes well x
Good luck Theo we all know you are a little fighter. Thinking of you all. Love Mike, Elaine, Nath and Kay xxxx
Thinking of you and Theo and hopefully I will be able to pop in and see you both tomorrow Xxxx
Glad things are picking up for Theo we will be praying for him. Take care love Catherine, Paul, Isabel and Fraser.
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Thinking of you and Theo and hopefully I will be able to pop in and see you both tomorrow Xxxx
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