I will keep posting the updates on this post.
posted from Claycord.com. 12/17/08
click the pic to read the post... it is good news.
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from Kathy Groebner 12/10/08 5pm
http://www.lpch.org/
If you would like to send me letters or notes you can use this web sight. It will take you right to the hospital I am at. It is called Lucile Packards. You can actually choose a card, write a note, and they will print it here. My ROOM # IS 3215.
Today my aunty Kat and Grandma Janet sat with me while mom went to the my school conference. She said Savanha and I did real well. She said when ever she is depressed a good school conference always makes her feel better:) They did all the stuff with me. We played BINGO in the game room. I won 3 times :o I also went to school here. They have one just down from my room.
The doctors told mom that I may get to go home for by the 20th for Christmas. Please pray that way for me I would not want to miss Santa.
I love to read your letters. Some people have sent them by mail, some post here on my bridge, and today my whole class sent letters with my sister. Mrs. Connie sent me some nice things to do here. Anna and Ava sent me pictures of my husband (mom taped one on my TV) now I can see him ALL THE TIME :)oxoxox). Any way you do it I love to hear from you. I have heard from friends that I have not seen for a long."
It is good news for the family and we hope that everything will continue to improve. If anything more develops I will post it here and you can get the latest by clicking the TOPIC - Katie Grace on the upper right of the blog.
MisterWriter
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from Kathy Groebner 12/9/08 noon
"Today was a good day for me. I got up this morning I eat 1/2 a pancake, Played some games on the computer, watched a little TV, went to the play room, took a nap, eat 1 ravioli 6 tator tots, and then went back to the play room where Build a Bear was having a little event. They told us stories, sang songs, did a craft, and at the end we got an animal. I got the Holly moose like Savanh's. I came back to my room and eat 3 little chocolate chip cookies.
I will not be coming home any time soon. I will be on antibiotics in my IV for at least 10 days. My hemoglobin is still low, and so is a few other things. This bug I have is a tricky one to treat and that is why it was so hard for the doctors to find it. They said I will be able to go to our home her in CA but not back to MN for the Holidays. That made me so sad and I know Savahna is too. But I have to have my Broviac replaced and they want to do it after Christmas. :(
I hope Santa finds our Cottage. Mom said she knows he will."
groebs4@live.com
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from Kathy Groebner 12/6/08 11 am
"Katie Grace Graduated to the third floor late yesterday afternoon. They now only have her on the antibiotics and Regular PH meds.
NO RIGERS:) and she looks better too.
Today she eat some eggs and a piece of cookie. She is up and really talking. And she can NOW GO TO THE PLAY ROOM. She is no longer on limited contact.
What a wonderful Christmas Gift."
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from Kathy Groebner 12/5/08 8.30pm
"Today was a little better as a matter of fact this picture was taken after they removed the Broviac. The cords in my arm are were the meds are all going. It is called an Arterial line. I may have to go home with it or stay here until the infection is completely gone. Then they will give me a new broviac.:( I have to have it for the Remodulin.
On the up side I have only had one case of RIGERS this morning and it was not as bad as the other ones. Most of my test are still the same but I am looking better as you can tell by my picture. I am alert and talking a little.
The doctor said if I keep up the good work I can go upstairs tomorrow. That is cool because that is where all of the kids stuff is at. I really want to go there.
Keep Praying and Thank you to all who have posted and are praying."
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from Kathy Groebner 12/5/08 9:45 am
"They just removed the Broviac from her chest, And this morning she had another episode of Rigers were her pressures all go crazy. It was not as bad as the past few ones but she did start to vomit no blood this time either. So there are many positive things going on today. I know that a seizuer is never positive but the size was. This means that the antibiotics are finaly helping."
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from Kathy Groebner 12/5/08 12.01 am
"They have decided to not take the line out tonight. They have found that her hemoglobin is low and her blood is too thin. For months the doctors have preached about how thin it needs to be and now it is to thin for surgery. The will have to give her plasma (blood) in order to thicken up the blood or she can bleed to much when they take the line out. The idea is she will get the blood slowly tonight and they will take the line out in the morning. For now though she has normal pressures and heart rate as good as that is for her now as long as the line is in they know she will rise again. For now she is resting and watching Little Bear"
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from Kathy Groebner 12/4/08 7:40 pm
"Katie Grace is now in the PICU at stanford.
It has been touch and go. she looses consciousness and has delusions of many things. The doctors have said that this can happen with the fevers. One thing is heart failure with heart rate up to 190 and oxygen at 85 she is critical.
They have found an infection in her Broviac line. Yesterday they place an arterial line in her arm so they can give antibiotics through the broviac. It has not worked. Tonight they will remove the broviac. This also raising the concern that when they do the infection that has built up on the line will release itself into the blood system setting near her heart. Again causing yet more what they call riders or something like that. Basically it is the body's reaction to the infection and is what she has been Fighting. We will be here long enough to get rid of the infection and place a new broviac. All you Pher's and parents of PHer's know how this is.
Just another part of being on the Pulmonary Hypertension Rollercoaster :(
Kathy (mother of Katie Grace PHer 6 yrs old)"
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from Kathy Groebner 12/4/08 3pm
"Now we know IT IS A LINE INFECTION. Katie Grace will continue to get Remodulin through an Arterial line. A cross between her broviac and a regular IV. They will remove the old line treat the infection. And then Place in a new Broviac as soon as the infection is gone.
Please keep in mind that the rest is what happened and how I felt at 1am.
Tonight I set and watch as Katie Grace struggles with life. She has a Gram negative infection. They tell me this is one of the worse and we may have to help her hold on. Now they say a blood transfusion may be needed. Her heart rate goes up to 195 her, blood pressure at 66/29, her O2 (oxygen) is at 85, they have her in a room I am freezing in with NO BLANKET or shirt on. They have laid her on a cooling blanket. The doctor has now brought in information for me to read because a blood transfusion may be needed. I also just seen a young man just feel dead on his High School football field. They believe it was his heart or was it undiagnosed Pulmonary Hypertension? I have to wonder? What kind of life does this all hold for my baby girl? How much pain is she in? Could I have stopped this? And they tell me it could be a few days of this before I see any change or results. The brochure says that the odds of her getting HIV or Hepatitis C is 1 in 2 million. Her odds of getting PH was 1 in 3 million. What kind of odds are those when you look at this from that point of view? I Pray God helps me know what to do. I do not even know what to tell John?"
We know that this family is going through an incredibly difficult time. Keep them in your thoughts.
Read more HERE
MisterWriter