November update

Jacksons operation took place on the 3rd November he was in theatre for 5 hours!!! the operation itself was a success he only spend 24 hours in intensive care then was allowed back to the surgical ward.

we had been warned about some of the possible side effects of a fundoplication but the reality is very different!!!!

since surgery Jackson has  required ALOT of suction he is producing/choking on big balls of fizzy spit. the Drs said this is because he will be swollen inside and it should settle. (luckily 2 weeks on and it has)

we were warned about slight retching, because his oesophagus is tied he is physically unable to vomit now. the reality is.. nothing prepared me for the noise or pain that Jax gets through retching (I will upload video) it is horrific. unfortunately a side affect of this is big apnoea’s. Jackson doesn’t deal with pain or possible the feeling that his body is different so he breath holds… LOTS!

another post surgery side effect is chronic wind. Jackson has never been very windy… but now that there is no where for it to go, again it is resulting in pain…… pain results in apnoea’s xx

Jackson has also had diarrhoea so much so he became dehydrated he has also lost a significant amount of weight.. this is heart-breaking for everyone to see, Jax has always been on the big side this is what has got him through so many illnesses.. for us now to be able to see every single rib is awful…

the doctor described Jacksons operation to me as the equivalent of a woman having a C-section. it was a BIG operation for such a little boy as of yet I haven’t seen any positive results from it. but it is early days hopefully things will improve.

as well as the fundoplication when Jackson was in theatre his surgeon also dealt with the bad granulation she repaired it from the inside… 2 weeks on and its already coming back 🙁 I don’t know how we will deal with this as there is absolutely no way that Jax can have his peg sight cauterised every 10 days for the rest of his life.

I know that this is quite a negative post. I try my hardest to stay positive but at the minute Jackson is going through a very rough time and we are struggling to find any positives 🙁 xx

please stay with us!! our little soldier has beaten the odds many times before I’m sure he will do it again

much love

Jacksons Mam