*Can't Joshua have a shunt to drain the fluid?
Joshua's cele is only skin/membrane. There is not any cartilage or bone in his encephalocele. As far as I know a shunt would need to anchor to something. Also, at this point Joshua's situation is so precarious, I think inserting a needle or doing a surgery for a shunt would kill him. I do put a shunt into "heroic" territory. A shunt might give us more time, but it's not a fix - its a delay. If all the fluid was drained from his cele then we'd have tons of empty membranes flabbing around. Also, that fluid is serving (to some extent the CSF is serving as "bowling bumper pads"). Besides that it's never been an option with all our doctors and nurses - no one's ever mentioned it. And we've talked extensively...
*What did I use to up my production?
Fenugreek. It's an herb, I bought it form "Nature's Way" - which I remember seeing in lots of health shops/GNC type stores in the USA. DO NOT get the Fenugreek with Thyme as Thyme is not recommended for nursing mothers. Pair this with breastfeeding and then pumping (manual or electric) after nursing so as to ensure the body is completely empty. The body will respond to making as much as is needed. Sarah - tell your friend to hang in there! Doctors paint really horrendous pictures when babies don't gain weight. But a slow weight gain is not going to give them brain damage or something serious like that! (Slow weight gain, not weight loss... that's a problem). Take Fenugreek 3 capsules (600mg each I think) 3x a day (9 a day).
Showing posts with label Questions. Show all posts
Showing posts with label Questions. Show all posts
Tuesday, March 11, 2008
Tuesday, February 12, 2008
Day 37
All is well this morning. We are going to Tauranga for the first time, it's an hour away. I have a meeting for this conference (this weekend) and we need to do some shopping for the gift baskets. Joshua had a doctor's appointment, but they had an electrical storm yesterday - messing up some equiptment - so our appointment is moved to Friday.
We're watching Cinderella ... again ... we're up to once a day no. Hmm...
Cathy P. asked how do I burp him?
Good question! I usually lay him on my chest with his head and cele laying on my upper chest - so his head's nearly hitting my chin. That works best, but if he won't burp - I lay him on my lap (tummy-down). It's essentially the same. just w/ a bit of finesse.
And the recipe for the biscuits is simple:
It's buttermilk biscuits, but I rarely end up doing the buttermilk part.
2 c flour
1 t salt
1 t baking powder
2 T butter
1 c milk w/ 1 T vinegar
Let milk and vinegar stand a minute - this is quicky-buttermilk. Rub in butter with dry ingredients and add milk. Pat out on floured board, cut with a cutter (a plastic cup works well too). Yesterday I just cut them in squares to save time. Bake at 350F (180C) for 10 min.
We're watching Cinderella ... again ... we're up to once a day no. Hmm...
Cathy P. asked how do I burp him?
Good question! I usually lay him on my chest with his head and cele laying on my upper chest - so his head's nearly hitting my chin. That works best, but if he won't burp - I lay him on my lap (tummy-down). It's essentially the same. just w/ a bit of finesse.
And the recipe for the biscuits is simple:
It's buttermilk biscuits, but I rarely end up doing the buttermilk part.
2 c flour
1 t salt
1 t baking powder
2 T butter
1 c milk w/ 1 T vinegar
Let milk and vinegar stand a minute - this is quicky-buttermilk. Rub in butter with dry ingredients and add milk. Pat out on floured board, cut with a cutter (a plastic cup works well too). Yesterday I just cut them in squares to save time. Bake at 350F (180C) for 10 min.
Monday, February 11, 2008
??? Questions ??? 8
*What happens as Joshua grows older and moves? What about the doctors reconstructing a skull?
Part of that question is answered here.
In terms of the doctors reconstructing a skull: I say all the time to people, "I think we're expecting a little more of the medical community than they can give." We have not been presented with such an option. It's never been mentioned. It's never been intimated. I don't think it's possible. That was my initial thought when we discovered Joshua's diagnosis. In fact, I said on more than one occasion: "Can't they just open his head, put the brain back in, and close it up???" But it's more than that. And in terms of reconstructing a skull... it may be possible. But the brain tissue is what the radiologist and neonatologist called, "Bad brain tissue". It's all there - but it's not doing it's job (apparently). All the things he's doing are brain stem and cerebellum activities. It's his cerebrum that's in the sack, not the brain stem or cerebellum. Cerebrum does stuff that he'll develop into - maybe...
There's no telling if he's using that part of his brain. There's also the issue of fluid pathways. Because his brain hasn't grown under it's ideal conditions (under pressure inside the skull) the cerebral spinal fluid pathways most likely did not grow properly. This means that even if they put his "brain back in" it would create more problems because the fluid won't flow right, the brain might not connect right. I described it - a while back - that his brain is like an egg. If you boil an egg you've got a shell, a white, and a yolk. If you crack it open and scramble it - you have just that - scrambled egg. Joshua's brain has most likely grown that way.
Part of that question is answered here.
In terms of the doctors reconstructing a skull: I say all the time to people, "I think we're expecting a little more of the medical community than they can give." We have not been presented with such an option. It's never been mentioned. It's never been intimated. I don't think it's possible. That was my initial thought when we discovered Joshua's diagnosis. In fact, I said on more than one occasion: "Can't they just open his head, put the brain back in, and close it up???" But it's more than that. And in terms of reconstructing a skull... it may be possible. But the brain tissue is what the radiologist and neonatologist called, "Bad brain tissue". It's all there - but it's not doing it's job (apparently). All the things he's doing are brain stem and cerebellum activities. It's his cerebrum that's in the sack, not the brain stem or cerebellum. Cerebrum does stuff that he'll develop into - maybe...
There's no telling if he's using that part of his brain. There's also the issue of fluid pathways. Because his brain hasn't grown under it's ideal conditions (under pressure inside the skull) the cerebral spinal fluid pathways most likely did not grow properly. This means that even if they put his "brain back in" it would create more problems because the fluid won't flow right, the brain might not connect right. I described it - a while back - that his brain is like an egg. If you boil an egg you've got a shell, a white, and a yolk. If you crack it open and scramble it - you have just that - scrambled egg. Joshua's brain has most likely grown that way.
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