Caleigh is officially at full feeds. That is 45mls an hour for 24 hours a day. That equals up to 1080mls of Elecare, which is 36.5 ounces a day. Non-stop. Always hooked up to a tube. Backpack toting and tube tangling 24 hours a day.
That said, Caleigh has been TPN free for 26 days and has done amazingly well.
So as of tonight Caleigh is done using her central line for fluids. Up until now we have been doing 400mls of normal saline through her line for added fluid. Tonight we are done.
This afternoon we drew 6 vials of labs. The regular stuff and then some to check on vitamins and minerals. The results should be back by the end of the week. I had our GI add the extras just in case we don't have a central line much longer.
We added a vitamin K supplement today because Caleigh's clotting factors are too slow. Basically, she could bleed easily and have trouble stopping. She had been getting the vitamin K in her TPN. So since we stopped the TPN she hasn't been getting it. Caleigh's body hasn't picked up the responsibility yet. Just a little deficiency we can thank short bowel syndrome for.
So we wait, watch closely for changes in her output and pray this is the end of the central line. I can't get my hopes up too high, but who knows?
We go to see the GI doctor next week. I'm sure we'll set up more of a plan at that time. Maybe there will be swimming for Caleigh this summer. Maybe.
That said, Caleigh has been TPN free for 26 days and has done amazingly well.
So as of tonight Caleigh is done using her central line for fluids. Up until now we have been doing 400mls of normal saline through her line for added fluid. Tonight we are done.
This afternoon we drew 6 vials of labs. The regular stuff and then some to check on vitamins and minerals. The results should be back by the end of the week. I had our GI add the extras just in case we don't have a central line much longer.
We added a vitamin K supplement today because Caleigh's clotting factors are too slow. Basically, she could bleed easily and have trouble stopping. She had been getting the vitamin K in her TPN. So since we stopped the TPN she hasn't been getting it. Caleigh's body hasn't picked up the responsibility yet. Just a little deficiency we can thank short bowel syndrome for.
So we wait, watch closely for changes in her output and pray this is the end of the central line. I can't get my hopes up too high, but who knows?
We go to see the GI doctor next week. I'm sure we'll set up more of a plan at that time. Maybe there will be swimming for Caleigh this summer. Maybe.
2 comments:
Here's to hoping for swimming for Caleigh this summer!
And I have three magic words for you if you need them as you work toward an IEP with the school system: one-on-one aide assessment. Our main assessor kept insisting our girl didn't need a one-on-one. I knew I was justified in thinking she did because our regional center had been paying for one at her daycare for over a year. But I didn't get what she needed till I asked for a "one-on-one aide assessment." Thanks to parent advocate for giving me those words. Use 'em if you need 'em. Good luck!
So glad to hear that Caleigh is doing well! Hope that continues!
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