Jack is on antibiotics for an infection in his g-tube and we've got him back on reflux meds, but it's not helping him so far. He is sick and crying with every feed now. His ped is away until next week, so I'll be calling her first thing on Monday morning.
He had reflux BADLY in his first couple of few years, tried many medications and none seemed to really help him, just take the edge off things. We finally switched his milk to a hypoallergenic, predigested formula and that seemed to "cure him" within days. He was stable for well over 6 months, but for a long time now, it has just gotten worse and worse - to crisis point this week.
I feel awful for him, yet at the same time it is very hard to deal with his crying and not being able to help. He doesn't want to be cuddled (not just the reflux, he's always been like that to a degree I think due to everything that has been done to him medically), shouts if you try to touch him, I can't get fluids into him as he takes no food or drink orally and is just sick if he has too much into his stomach. He's woken up crying in the early hours every night for a while, which is difficult with Ben sharing the same room now. We're both tired, I'm snappy with the other kids.
He was on the verge of Nissen fundoplication surgery last year before they switched his milk. If so, he may need the open surgery due to his previous heart surgery, having the g-tube and he has a catheter from his vp shunt in his head for the hydrocephalus that drains internally to the peritoneum, so I don't know if there is too much obstruction to do it keyhole. He's tried antacids, tried gastric emptying meds, I fear this may be his only option. Of course, if it helps and is advised, we'll have to do it, I just hate this for him. He's been through too many surgeries already. Please let him just have some break from it all. He already has another big surgery on his foot/leg next month and will have metal pins in his leg for 2 months and a cast for I think 3-4 months. I don't know how much more we can take.
I know it's blurry (I'm going to launch my camera into outer space soon!), but here is he with Katie at his school assembly we went to last month. Tony's company raised £1500 for Jack's school and there was a little presentation of the cheque. He was just in his element and it was lovely to observe him from a distance, then he noticed us and waved :)
Click to enlarge if needed.
3 comments:
(((((Kelly)))))
That's a very sweet picture of him waving to you.
I hope he gets better, and doesn't require an additional surgery.
I found your blog quite by chance and kept it on my favourites list as I find your attitude to be so encouraging and amazing! You are an awesome Mom . . . just keep doing what you're doing . . . life isn't always easy but its still worth it. As my wise ol' Gram told me the other day: To get from where we were to where we want to be we have to survive being where we are!! Take care! Sincerely, Michelle
Thank you, that is very kind.
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