dmp
Senior Member
Poor little baby...
:-/
:-/
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mom4 said:Tori's infection is clear! They have been waiting for the swelling/fluid retention to go down before performing the biopsy, but the condition is not getting better. She keeps losing too much sodium and protein through her urine, so they have to keep pumping in more fluids with sodium and protein. They have decided to just go ahead and do the biopsy, even though people with fluid retention don't heal as well.
This is good, because they can more accurately diagnose the problem. She has been diagnosed with congenital nephrotic syndrome. http://www.nlm.nih.gov/medlineplus/ency/article/001576.htm#Causes, incidence, and risk factors
If they decide she needs a transplant, they will have to wait until she grows, maybe a year. Then they will look to family members to donate first. This is going to be a hard decision for us all. I would not hesitate to give one of my kidneys. But one of my children's? It will be a very hard decision.
Thank you for those of you who have continued to pray and wish us well.
mom4 said:Thanks, Kathianne. They had her in surgery for over an hour today, but they did manage to get tubes in through her neck. Thank God.
Thank you, Kathianne. I can't tell you how much that means to me. Victoria has had several close calls, but she always seems to pull through. I really believe she will be all right in the end, although it may be along road. Prayer makes all the difference. Thank you.Kathianne said:Mom4, just want you to know that to my way of thinking, even thought my class is full of 12 and 13 year old 'misfits', (being kind, really), from their hearts to God's ear. As Dillo pointed out in another thread awhile ago, we don't always like the answer, but I do want you to know, there are 23 kids and myself praying daily for the baby. I hope it all comes out positively!
(((((((((((((hugs, kisses, and prayers))))))))))))))
Done. (((((((hugs))))))))))))mom4 said:She is in trouble now. They had taken her breathing tube out today, and she had lost so much of the excess fluid. But now she is being reintubated, and her BP is way down. Please pray, if you can. Thank you.
mom4 said:Baby is stablized. They put the breathing tube back in.
manu1959 said:fight little girl......fight!
please grow olde.
mom4 said:UPDATE:
They took Victoria off the respirator again last week, and her BP remained stable, although high. They say it will be high as long as she is going through dialysis. She is still doing hemadialysis, which is too dangerous for her to go home. They have to remove 1/4 of the blood in her body just to prime the pump, so she has had a few transfusions. We are really hoping she can be switched to fluid dialysis; it is MUCH easier on her little body, and she could conceivably go home if she was tolerating it well. Her swelling is down, and her fluid retention is way down. She looks like she did when she was born, instead being all puffed up.
Thank you all for your continued prayers and support.
mom4 said:UPDATE:
They took Victoria off the respirator again last week, and her BP remained stable, although high. They say it will be high as long as she is going through dialysis. She is still doing hemadialysis, which is too dangerous for her to go home. They have to remove 1/4 of the blood in her body just to prime the pump, so she has had a few transfusions. We are really hoping she can be switched to fluid dialysis; it is MUCH easier on her little body, and she could conceivably go home if she was tolerating it well. Her swelling is down, and her fluid retention is way down. She looks like she did when she was born, instead being all puffed up.
Thank you all for your continued prayers and support.
mom4 said:UPDATE:
They took Victoria off the respirator again last week, and her BP remained stable, although high. They say it will be high as long as she is going through dialysis. She is still doing hemadialysis, which is too dangerous for her to go home. They have to remove 1/4 of the blood in her body just to prime the pump, so she has had a few transfusions. We are really hoping she can be switched to fluid dialysis; it is MUCH easier on her little body, and she could conceivably go home if she was tolerating it well. Her swelling is down, and her fluid retention is way down. She looks like she did when she was born, instead being all puffed up.
Thank you all for your continued prayers and support.
Progress!mom4 said:Tori is doing pretty well, considering. They have been doing both hemadialysis and fluid dialysis. She is tolerating both, and they are talking about putting her solely on fluid dialysis soon. They have to make sure her tube isn't leaking into her stomach again. They have been trying to feed her with a bottle, but her stomach is shrunken from being on a feeding tube, and a "normal" 2 oz. feeding just comes right back up. So they are trying to gradually increase the feeding amounts to stretch her stomach. She is still taking oxygen, but is not on the respirator. No infection.
My mom said since her eyes aren't puffed shut any more, she has been looking around the room, and sometimes she bats her hand at something. She loves to look at the mylar balloons.
mom4 said:Tori is doing pretty well, considering. They have been doing both hemadialysis and fluid dialysis. She is tolerating both, and they are talking about putting her solely on fluid dialysis soon. They have to make sure her tube isn't leaking into her stomach again. They have been trying to feed her with a bottle, but her stomach is shrunken from being on a feeding tube, and a "normal" 2 oz. feeding just comes right back up. So they are trying to gradually increase the feeding amounts to stretch her stomach. She is still taking oxygen, but is not on the respirator. No infection.
My mom said since her eyes aren't puffed shut any more, she has been looking around the room, and sometimes she bats her hand at something. She loves to look at the mylar balloons.
So glad to hear this.mom4 said:Tori is doing pretty well, considering....
She is very hopeful. They have some tough decisions ahead. Tori will definitely need a transplant, and they will only transplant an adult kidney. It seems when they transplant children's kidneys, they tend to have trouble growing with the child's body. So Tori will have to be on dialysis for at least a year. Maybe 2-3 years before she is big enough for the transplant. So it will still be a long road.Joz said:So glad to hear this.
But how is mama doing?