India's spot

I got a call from the the doctor this morning and India's spot is positive for MRSA. We delayed giving her the antibiotics until we knew for sure but Kiki is going to put her on them now. The wound was healing without them but just to give her parents peace of mind she is going to start taking it. The sensitivity test, test to determine what antibiotic kills it, said that it is sensitive to Septra, the antibiotic that was prescribed.
I did tell India that it might be the germ that made Raisa so sick but that we had medicine to make it better if it didn't start doing that on it's own so she will probably not panic when Kiki tells her.
Tony soon will be on his way home with Raisa. They had her cremated and he had to find out if he could fly with her. His mom and a friend are with him and they are renting a car to drive down from Anchorage. He'll be here sometime Thursday. Soon, the family will be reunited and can begin to heal.
I'm not sure what they are going to do for a memorial service but we're having one at the church, irregardless.
The girls do know that she is gone and that Daddy is bringing her home. I think they are dealing with it okay.
I have my moments, usually at night, when I can't seem to draw a breath without tears but I know that she is okay and I will see her again. I only hope her parents have that same assurance.

~Pam

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Raisa Alexandria Rea

April 26, 2008 - April 17, 2009

Until we meet again, I'll miss you Snicklefritz

Final thoughts

This will be our last post for a couple of days. Raisa's parents have decided, based on medical advice, to release their precious baby to the Lord. They will spend her last days in a private room where they can finally hug and cuddle and rest with her before they have to say good-bye.

India's spot has been cultured and we await a final verdict on it. Aggressive antibiotics have been prescribed, just in case it is MRSA. Mom is going to have a discussion with her parents before we start giving it to her to make sure they really want to give them to her. Antibiotics can weaken the body and might make her more susceptible to any other MRSA germs she contacts. I'll let you know what was decided when this is all over.

Thank you for all the prayers. I truly cannot tell you all how grateful I've been, knowing that so many people have been before the throne of Grace on her behalf. And even though this is not the outcome we desired we can still rest in the knowledge that God is in control and His will be done.
Love,
~The Arndt Family (and India and Phaedra)

Glimmers

This child keeps her family on a roller coaster! Raisa's right lung has healed enough for her to use it and her respiratory support is down to 50%. She has taken over the other 50% herself. All cultures from the pockets of bacteria have come back negative for MRSA. That's good but with a catch. MRSA can mutate to another form in the middle of treatment so it may have mutated to another form that they aren't testing for. Hopefully, it is dead and will cause no more damage.
The efforts to wean her off her medications continues slowly. They had her sedation down really low yesterday but had to give her some to help her rest during the night. Again, they aren't sure if she feels pain but it's cruel to assume she doesn't. I guess she had her eyes open a lot but she is not tracking and her eyes are no longer rolled back in her head. Could mean she's coming back and could mean nothing. When they press on her fingernails she opens her eyes but that is all the response she has. The neurologist told Kiki that his opinion will probably be rendered in 24-48 hours. Since she is on morphine they have to withdraw it slowly or her numbers start to go wacky from withdrawls as her body has become addicted to it.
It continues to be a bumpy ride but my bumps are decidedly less severe than those her parents are experiencing. Please continue to pray for Raisa's safe return and for peace and comfort for her parents.
~Pam
P.S. Please pray for India as well. We discovered a suspicious spot on her side yesterday and are taking her to the Dr to get it checked out. I have my suspicions about what it is but will hopefully find out today.

Resolution of sorts.

Well, the situation in Seattle is not as hopeful as was believed. Raisa continues to put up a fight and her parents are making some decisions about her care as the days go on. Kidney, breathing and learning difficulties can be dealt with but a complete vegetative state will not happen. They are going to begin cutting back on the sedation beginning tomorrow so they can get a better understanding of her brain function. On the drugs it would appear that she has lost all higher brain function but her parents are not giving up on her yet. The next few days will decide what will happen with our precious baby girl's life.
India wanted to say something to her family while they are separated. I tried to get Phaedra to say something on an earlier video but all she did was pull faces and smile bashfully. I'll try again later.

The girls are going to stay with us until this is all finished so their parents know where they are at and they don't have to call around to find them when they have news. This is the bumpiest ride, emotionally, that I have ever been on and I can't imagine how exhausting and draining it has been to the parents. I still covet prayers for her safe return to us and as Kathy Montgomery said yesterday, "It ain't over until it's over!"
~Pam

Prayer!

Raisa was flown to Seattle Children's Hospital last night. She made the trip and is now safely in the PICU. The panic that some may have heard about last night was false information. If you don't know what I'm talking about then don't worry about it. We still haven't heard from Tony since he checked into the PICU at about midnight, Washington time. Mom called the hospital and the nurse at the nurse's station in the PICU assured her that Raisa was there and she was alive. We have a message at the nurse's station for Tony to call us, no emergency just want information. Tony... If you are reading this then CALL US!!!!!!!
The whole "family" down here was up all night in prayer and I'm not going to church today so I can wait by the phone and India should be coming today.
~Pam

I guess the setbacks have begun.

Raisa was put back on the other respirator today. The other one was too much for her poor lungs to deal with. Unfortunately, it caused more damage to her left lung (the good one) so that her CO2 levels are too high now. They aren't at panic levels but too high is too high. The new respirator causes her lungs to stay inflated, not infalte and deflate. Her ph is a little too high as well. I remembered to ask about the MRSA and it is still being controlled with the same antibiotics. The pocket in her chest cavity is refilling and they had to put the tube back in her chest. It's a couple steps backward but at least it was not total and catastrophic failure. There is still hope and He's still on the throne, totally in control of the situation. Her heart continues to beat regular and strong.
In other news, Riley, Kathy's nearly two year old grandson may have chickenpox. I am considering telling Tony and Kiki so the girls, India and Phaedra can come and be exposed. On the other hand, I think India has had chickenpox and I don't think Phaedra's daddy could intentionally make her sick right now. Riley's mother was hoping that he doesn't have it until Kathy and Mom told her that it's better for him to get it now. Chances are it'll be a milder infection, it's easier to deal with in a child his age and having your body fight a naturally occuring infection is infinitely superior to being vaccinated. Oh, have I posted a rant on vaccines yet? No... I guess that'll have to come when the current crisis is resolved.
Night,
~Pam

It keeps getting better and better!

Yesterday the doctors took all of the IV ports out of one of Raisa's arms so she only has two of them now, one in one arm and one in the top of her head. She is off of the beta blocker and the epinephrine that was keeping her heart beating correctly and she is doing wonderfully. Her sedation has been lessened as well and is now being given to her through her feeding tube instead of IV. They are still waiting for her lungs to heal some more before they can take her off the respirator and wake her up all the way. I still don't know when she might be able to have visitors but hopefully she will off the respirator in less than a week. I might go up with Pastor and Anita next week, Monday or Tuesday to see them. I had wanted to go today since it's a no work/no pay day for Mom but then she started talking about all the things that needed to be done and I knew I couldn't go today. I've been a ball of stress and regret today but hopefully I can go next week.
I guess that's all today. I might try and post some pictures of the eruption that I actually saw come out of Redoubt but I might do that later. Either way, stay tuned!
~Pam

Wonderful News!!!!

No, Raisa is not 100%. She is still critical and in a coma and isolated. The wonderful news is that her surgery went so great that the surgeons were able to move one of her drainage tubes while they had her on the table putting her on the different dialysis. It's great that she was so strong that they felt comfortable doing that. And, Tony talked to the kidney doctor, for the first time by the way, and was told that he expects her kidneys to come back 100%. They are shut down but she is not in renal failure as I feared. I've heard of this but not that often. I guess serious illness shuts them down without damaging them so they can bounce back when the body isn't dealing with so many toxins. Strange!
Anyway, I really hope the housing situation is straightened out by tomorrow since Tony's room was only rented for two days. He said he's going back to Hickel House tomorrow so I guess it's all right. Kiki told the nurse that she would camp out on a couch in the PICU if she had to but I really hope it doesn't come to that.
The big ball of stress in my chest has eased somewhat and I can finally draw a deep breath and think of what it's going to be like when she gets home. I know that her life is still in danger but I'm really hopeful that she's going to come home. Every day that she doesn't get another infection is another day that her lungs have to heal so I've been going one day at a time.
Well, we stayed at the pastor's house too late tonight and I'm sooooooo tired so g'night.
~Pam