We’ve all reluctantly come to the conclusion it may be time for the G-tube. Even Manolis agrees. Cathy called the gastroenterologist’s office about it and they said she has to meet with a nutritionist first, and that won’t be until mid-September. We are a little concerned because Maria needs better nutrition *now* while she’s recovering.
Maria started eating well early this week, though she was still drinking less than she should. She was even off the NG tube because she was getting enough orally. That lasted all of two days. Now she’s back to eating little and drinking little. Cathy’s going to put the tube back in tonight and see how much Nutren (basically heavily vitamin fortified milk) she can get down it before Maria pulls it out again. Maria’s also fighting her medicine a LOT.
Maria saw the orthopedic surgeon this week. He’s happy with how she’s healing. He agrees with the decision on the G-tube but is fine with waiting until September. He said they couldn’t do it now anyhow since Maria is already compromised from the hip surgery. Even though the G-tube is pretty minor surgery, it’s still inpatient and should be done when she’s stronger.
We got into see the neurosurgeon today. You know, the neurosurgeon we’ve been trying to get an answer from about Maria’s optic nerve atrophy for MONTHS. He said it’s definitely not from shunt pressure and explained why. I guess that’s why he hasn’t called – no news is good news. However that still doesn’t explain what’s happening. Just to be 100% sure everything’s fine he’s going to tap Maria’s shunt next week – stick a needle in and see if some fluid oozes out. It’s a quick procedure in his office.
The neurosurgeon was VERY concerned about Maria’s lack of eating and drinking. He pointed out that after surgery the body needs a lot more calories to recover. That’s kind of obvious in hindsight, and I’m surprised the orthopedist wasn’t more concerned. So we are going to push the NG tube more and it seems increasingly certain Maria’s going to get a tube in her belly.
We’ve heard lots of second hand stories about parents who went the G-tube route. Every story ends with the parents being really happy with it. It takes the stress out of eating, the kid gains more weight, is more healthy and energetic and so on. Still, it sucks to do it.
Maria isn’t scheduled to get her casts and bracing and so on off until just over a week past the beginning of school. We aren’t sure how that’s going to work. Since she can be transported only in the new, loaner wheelchair that means she can’t ride the bus–the loaner doesn’t have a rigid frame, isn’t crash tested and isn’t designed for transport. We also don’t know how well she’s going to manage in school, but we’ll figure that out then.
Her legs will of course be really weak after the casts come off so there will be a lot of work before she can get back to standing and walking. She’ll be much stronger in the long run, but there’s still a long road ahead of us.