Sunday, 28 April 2013

What to say!

Some life journey's are worth the climb to the top
I have been thinking of what I could say about where we are up too particularly in regards to my little bug, Faith. This is hard to talk about as it is something I am not happy about and want to just keep pushing through each second and each minute with the hope of a happy ended at some point. Avoidance!

My heart hurts when I say Faith has her NG tube back, has had for 6 weeks now. Why? Because she wasn't able to eat enough orally to sustain her weight and with so many UTI's it was a uphill battle. But in saying that I think, no I believe, she could have done it if the hospital had helped us more when we were last there in regards to other options. They pushed and pushed for a NG tube and even when Faith drunk the formula they wanted it wasn't enough. We pleaded and pleaded but they gave us no other option, they were not going to let us go home without one. I am sad, I am angry, I am grumpy but nothing changes the fact she has one and if I could, I would go back and ask for other options and help. Yes, she is gaining weight consistently now, but there are consequences. For example:

Faith no longer sleeps through the night (sleep, sleep what is that?).
She has tube feeds every two and half  to three hours (it was two hourly so not so bad now).
We can't go in the car by ourselves because she rubs her nose and then vomits and the tube is coming out her mouth.
No longer can we go out in the morning, the formula causes tummy pains, all our outings if we are able, are in the afternoon (this isn't a massive concern to doctors as she is gaining weight and they can't find any allergies. How I miss the blended diet!).
A vomit at least once per day - caused by rubbing her NG tube

this list goes on.....

Faith's life is harder than it was when we had the NG tube in last year. But the wonderful thing is she is still eating orally but not much as the tube aggravates her swallow. She is getting stronger and putting on weight.

This all leads to the next BIG life change, on 9th May, Faith will be having a bard button surgically inserted. It means no more NG tube and she can then eat as much as she wants orally and then we can top her up through her button. So that is good but I do really really wish we were given other options. I don't feel comfortable with it but no one seems to offer us anything else. There is no second opinions due to where we live and we already travel 3 hours, but with a NG tube it is even longer to get anyway. It's in God's hands!

1 comment:

  1. I am so sorry you're going through this and my heart is hurting right along with you. I feel the same way about Simeon's trach-- why does he need it? Why won't they let us take it out? It's frustrating to feel inhibited by equipment. I don't have any words of wisdom-- nothing to cheer you really-- just know that you and your Faith are in my thoughts and prayers. You (we!) can do it.