Calling All Christians!

[dmp]

Poor little baby...

:-/

 

[archangel]

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.

Adults could not donate a Kidney for a child of this age..mis-match on size...and I for one would not make the decision for your children as they would have no choice in the matter...stay with prayer and a possible donor match from a deceased child!

 

[Abbey Normal]

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.

Mom, I am so sorry. This must be so tough for her parents. Everything inside us wants to protect our babies, and we watch helplessly while the doctors do such rough things to them.

 

[Annie]

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))))))))))))))

 

[Nienna]

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))))))))))))))

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.

 

[Nienna]

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.

 

[Annie]

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.

Done. (((((((hugs))))))))))))

 

[Nienna]

Baby is stablized. They put the breathing tube back in.

 

[manu1959]

fight little girl......fight!

please grow olde.

 

[Annie]

Baby is stablized. They put the breathing tube back in.

I'm glad to hear it. I hope the parents get some rest, you too. I've a feeling you all are going to need it. Prayers will continue.

 

[Abbey Normal]

fight little girl......fight!

please grow olde.

Manu, that is just so nice. :kiss2:

Prayers continuing, Mom.

 

[Nienna]

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.

 

[no1tovote4]

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.

Excellent! We'll keep it up.

 

[Bonnie]

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.

Thank God!!!!!!!

 

[manu1959]

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.

keep fighting little girl.... keep fighting....the world is a wonderful place.....keep fighting

 

[Nienna]

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.

 

[Mr. P]

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.

Progress!

 

[Abbey Normal]

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.

Oh, how precious that is.

 

[Joz]

Tori is doing pretty well, considering....

So glad to hear this.
But how is mama doing?

 

[Nienna]

So glad to hear this.
But how is mama doing?

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.

My BIL is a doll. He is so solicitous toward my sister. She has left the hospital 4 times now, so she is getting out a little. And she has been trying to sleep, although not very successful. She realizes that she needs to keep up her health, though, and she is trying to eat and sleep.