Today we had some good news 🙂 Hugo’s infection marker had reduced to 30 and his legs look so much better. His knee is still slightly swollen but it was agreed that it has reduced so much he won’t be needing a drain.
It was hen suggested that he would have repeat bloods done on Monday and if his infection level has continued to decrease then he could go onto oral meds with a view to come home – Fantastic, this is what we had been waiting for.
But then a cloud came with a very hard decision. The infection control lady / immunologist came to visit me. She has been working on Hugo’s case with great interest as it is the first case at Sheffield for a baby to have an infection as bad as this but appear so well/ have no other symptoms. There has been discussions around whether his immune system function correctly which will be looked into over the next year but she had concerns about him going onto oral meds.
She explained that if Hugo went on to oral meds before all of the infection had gone then there is a chance that he might not absorb all of the anti B into his blood stream, if he is sick/ brings back milk after a feed this then dilutes again the amount he actually gets.
She also explained that even when the infection level is normal there could still be “bits” of the infection hanging around that could grow again.
If Hugo does have something wrong with his immune system then he may not be able to fight it effectively and we could go back to square one. She suggested a further two- four weeks having IV antibiotics until the infection has left and has been clear for a while. This gives him the best chance of it not returning.
We agreed that we wanted the best for our little man and as much as we want him home, we also want him to be well.
So that’s it, we have been moved to a private room as we are now “long term residents” we will take it in turns to stop with him and also spend time with our other children. We will have family time at the hospital and maybe even a meal together and we will continue with everything as “normal” with the help of our friends and family.
I’m sure the next 2-4 weeks aren’t going to be easy but we will be strong as a family.
As the saying goes “what doesn’t kill us, makes us stronger”