Pix and stories

Pastor's driveway tried to eat our van on Wednesday night. We were picking up the hog food since we're housing their piggies until they get a permanent pen built. Their driveway is being swept away underground. You can hear the water rushing under the gravel but since it's underground, you can't tell that there's nothing to support your vehicle until you've fallen in.
This is the orchid that the ladies in Mom's office got for us when they found out that Raisa was not going to make it. I'll fight like crazy to keep this one from dying. I've managed to keep Mom's Mother's Day Paphiopedilum alive for six years now so I might just have a handle on this orchid thing. This one is an hybrid of four different species so it is much easier to take care of than most pure species. It really needs to be repotted but I can't do that until it finishes flowering and contrary to past experiences, this one is continuing to flower. Most of my other ones dropped their buds as soon as they came into our house. I think maybe this one is going to make it. They also bought an huge bag of potting mix, especially for orchids and with the fertilizer already mixed in. That seems to be the worst thing for me, fertilizing my plants. I might just up and repot them all this year since I'm sure they all need it.

This has been my sleeping buddy since the girls left the Saturday after Raisa died. Grandma Kathy gave this teddy bear to Phaedra at the airport and she left him here when Kiki came and got them. I was like a crazy lady that night, trashing my own house, hoping that the girls had left something behind that I could hold and feel and be connected to them through. The teething toy was in Raisa's crib, exactly where she left it that sunday. I carry it with me when I wear a skirt with pockets. I know it sounds weird but it really helps keep me calm to be able to run my fingers over the scrapes her new teeth made. Knowing that it was something that she played with and something that she enjoyed helps her not seem so far away. Since Phaedra left her Dora doll behind on Monday it sleeps with me too but I am much more attached to the teddy bear.
Speaking of Grandma Kathy, (Tony's mom) she left Sunday night. The girls stayed with me from about 1:15 on Sunday afternoon to 2 or so Monday afternoon. I had a full 24 hours with my girls and it was just wonderful. India's spot is healing really great, she only has one more week on the antibiotics and her rash from the band-aids is healing up great too. She has had enough of MRSA! I hope she will be much more diligent about washing her hands now and not picking her nose.
Also, I am back on the "no poo" wagon. I've been using Desert Essence Organics for a couple of years but my hair was in really great shape when I was no pooing. I let a hairdresser scare me into going back to commercial products. I think that $10 each for shampoo and conditioner is really ridiculous when I can wash my hair for a year on $15 of baking soda, lemon juice and eggs. And my hair is healthier without even the most miniscule amounts of silicone on it. Also, I have decided to not get it trimmed again until it is the length that I want which is terminal length. I'm really curious about how long I can grow it. I intend to do search and destroy of individual split ends every day for awhile. That way I stop the splits without sacrificing length. Win-Win!!!!!
(Well, don't tell Jaime, but my real hair length goal is for mine to be longer than hers which is waist length. I'm not competitive or anything!)

Night,
~Pam

Happy Birthday Raisa!

Life and Stuff

Tony got home on Thursday. His mom came home with him and I'm not sure how long she plans on staying. Probably till the memorial service is over. Speaking of which, it has not been discussed, let alone planned. But that's okay. I suppose it's been really difficult for Tony since we've been here for a week, testing life's waters without Raisa in it but his life has kind of been on hold. He said that it's like he's been underwater. It still hits me sometimes, that feeling of standing still while life goes on around me. It doesn't seem real sometimes, that she's gone and then I'll find something that was hers or that is where she left it and it hits me all over again, like she just died yesterday. As I've said before, it probably makes it more bearable that I haven't seen her since she got sick. I never saw her in a hospital bed, having a machine breathe for her or agonized over medical decisions or had to sit there and watch her take her last breath, knowing that there was nothing I could do to save her. I never felt the excitement of a parent, feeling her move around in my belly, or being so scared that she would be born in the ambulance because the Lord picked the stormiest morning in April for her to be born. My pain is a transient pain. My pain is for the moment as I've still got my own family in my future (Lord willing). Their pain will last for the rest of their lives. And while I'll miss her every day, my sorrow will fade to nostalgia, to be replaced by unspeakable joy when we're reunited in Glory. We may not remember who we were to each other here but our reunion will be joyful nonetheless. I fear that her parents will miss out on that day.
On the one hand there's this sense of urgency, to get the memorial service over so that there's some sense of closure but on the other hand it's hard to say good-bye all over again and since she was cremated, there is no rush to bury her. I guess we wait on her parents to be ready to say good-bye and I can't imagine the pain that even contemplating that generates. How do you plan a memorial service for the child you only met a year ago? How do you say good-bye to, not only her and all she meant to you but to all the hopes and dreams you had for her? I know they were already imagining her first birthday, her first day of school, her first fight with a sister, her first best friend, her wedding, her first child... I know they were because I was, and I wasn't even invested in her life like they were.
The best I can do is be an ear to listen and a shoulder to cry on. And through it all let the Lord's peace and faithfulness shine through so that all can see and desire Him too.

Night,
~Pam

Other pieces of my life

Think Spring people! Think Spring! This is the goal team! We gotta play through the pain and squash the other guys! Don't let them beat you and lets take it to them! We gotta fight,fight,fight, let's WIN!!!!


This is one of Redoubt's eruptions. Mom and I went to Cathy Perry's house to watch it since we could sit inside, drink coffee and discuss current events. All while getting pictures like this. The mountain should be white this time of year but so much ash fell just in this one eruption that it turned gray. It is again white since it's snowed since then but for the little bit that it was gray it was really cool.
Sunset on Cook Inlet, filtered through volcanic ash. We caught the last ten minutes of sunset and it just got more and more orange. Redoubt is off to the right, ejecting a plume of steam and ash.

This was a few days before Raisa passed away. They were blowing off steam and having a great time too. It was really nice having them with me and times like this kept me in AK, mentally, and in the present.

Well, they are almost here since Kiki is going back to work today. It'll be easier when she has something to occupy her mind all day. Ask me how I know. It's weird how, I totally agree with her going back to work, getting on with her life since sitting around all day, thinking of the loss and the pain won't change anything, but I feel so guilty when I think of doing the same. Maybe that's the way it happens when someone who is so precious to you is taken. Maybe it'll help that I haven't had the three of them together since Raisa got sick. I've had a month to get used to the feeling of two instead of three. I had a dream last night that all three of them were with me and India was carrying Raisa, running with her. India fell down and Raisa was so scared. I scooped her up and comforted her while she cried and clung to me. It wasn't until I woke up that it hit me that she wasn't going to do that ever again. Never again is she going to cry, or be scared, or be made to do something that she doesn't like. I will be able to hold her again, but not this side of eternity. I guess it's a time span that I'll learn to live with and it renews my fervor to reach her parents.
Well, the other two are here now so I gotta wrap this up.
Later,
~Pam

P.S. India's spot looks fabulous. Her rash from the adhesive on the band-aids is still kinda rough looking but the spot itself looks amazing. Hopefully the rash won't open up and get infected too. Kiki has been bathing the whole area in peroxide so the chances of it spreading are slim. WooHoo!!!!!!!

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

Make photo slide shows at www.OneTrueMedia.com

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

What craziness!!!!

Well, no surgery today. The two children who were scheduled ahead of her went a little long so by the time the surgeon was ready for her she had been off dialysis too long so they decided to just hook her back up and do the surgery at a later date. Tony will call with an update about that tomorrow.
In other trying news, both Kiki and Tony have been kicked out of Hickel House, the hotel for families right behind Providence. Kiki didn't want a room with Tony since she has her boyfriend with her and the tension there was not good. The nurse she talked to thought she was trying to make Denali Kid Care pay for another room but Kiki was willing to pay for another room. She can't afford a hotel room and cab fare so instead she came home. Tony was told that the room he was in belonged to Kiki so he had to leave. Someone was kind enough to rent him a room in a hotel and he has Mom's van so he and Phaedra are in a hotel room tonight. Kiki, hopefully, will be able to go back up tomorrow since the room situation was straightened out after she left. I am really furious with that insane nurse. What kind of woman yells at the mother of a critically ill infant? I understand that she thought Kiki was trying to do them wrong but give me a break! I talked to Kiki a little bit tonight and hopefully helped her realize a little bit of the other side of this situation. She doesn't understand what Tony's problem is since they are getting divorced, he shouldn't be such a jerk around Eric. I told her that it's really hard for a man, and kids for that matter, to watch someone else moving in on his family. Kiki's parents are still married so this is not a situation she is familiar with. Her first husband, India's father, disappeared for five years while Tony was establishing himself as the dad in that family. But Tony isn't leaving so Eric can move in and maybe that's what's got her so confused. Anyway, I really hope they can get something worked out so the tension isn't so high. I know it's not good for either of them and it's not good for Phaedra to be in the middle of it. Not that she's being fought over, just that it's not good for her to be in such a tense situation.
I think before this is done that I might just polish the outside of my house. It's been really stress-relieving to be cleaning all day but it's really killing my back. I'm not sure I'll be able to get the whole thing cleaned but I can't just sit around all day waiting for news either. It's kind a lose-lose situation. Well, I get a clean house so that's not entirely lose there. I guess I've rambled enough.
Night,
~Pam

Some good, some bad

Raisa had a CAT Scan today and she does indeed have some brain damage. They won't be able to tell how severe it is until she wakes up. She is scheduled for surgery tomorrow to put her on the other type of dialysis. I guess her right lung is still severely damaged and and her left lung isn't as healthy as the doctors thought it was. The surgery is one that can be done right in the ICU but the risk of infection is too great so they are doing it in the operating room. They are watching her very carefully to catch any potential infections. The doctor also said that the possibility exists that she will have to be on dialysis for the rest of her life. I don't think that's the end of the world though. People live for decades on dialysis and the possibility of a transplant exists until we get socialized medicine. Hopefully our president will not get that accomplished until she has either healed, or has a new kidney. I know that sounds like all bad news but the fact that I didn't have to post about her funeral makes it amazing, wonderful and very optimistic news.
Tony said that since moving onto the other respirator her color is amazing and her fluid retention is still going down so the Lord continues to heal her tiny body even as the doctors fret about what-ifs. I continue to praise Him and take comfort in the fact that, should her time here be just about over, I will see her again!
India is still with Brad and Phaedra is still her daddy's steadying hand and his grounding rod. As hard as it is on me to not have either of them here I can't complain since they are where they need to be.
I'll post the outcome of her surgery tomorrow, as soon as I know how everything went.
Night,
~Pam

New developments

Raisa continues to improve. They switched respirators yesterday. Instead of the kind that blows small, quick puffs, she is now taking full, deep breaths. While they were switching machines, she continued to breath on her own. The tube in the left side of her chest has been taken out but there's still a tiny tear in her right lung so she is still draining from that side. She is being taken off dialysis and they are going to irrigate her abdominal cavity instead. Her fluid retention is coming down so they feel safe discontinuing the dialysis. The doctor feels that cleaning out her abdominal cavity will help with the fluid as well.
I think she is scheduled for a CAT Scan today but I can't remember if it's today or not. The doctors say there's a possibility of brain damage but it's my opinion that, so long as it isn't severe, her brain is still young enough to compensate for the damage. And even if it is severe, WHO CARES! She's still Raisa and we will all still love her!
The Lord continues to move in mighty ways in the Providence Hospital PICU. The setbacks that they were expecting haven't happened and we're praying that they never do and she continues to get stronger and stronger. The timeline is the same, a couple more weeks and she can either some home or get transferred down here. I hope they keep her till she can come home since this hospital is not at all the best place for a sick person.
Phaedra is in Anchorage with her daddy while India's father has her at Kiki's house. I don't know how long Brad is in town so I don't know when India is coming back. I imagine Tony is going to keep Phaedra until India's father is gone or tensions get to be too much for her in Anchorage. He doesn't think it's fair that India can spend time with her dad and Phaedra can't. This makes me realize more and more how badly I want my own children. I have nothing to do now except think and that's not fun under the circumstances. I can't tell them how hard this is on me since I can't see any of them and I want my kids back! Man this is hard!
Well, at least I have the time and energy to give the house the thorough cleaning it so desperately needs now. Besides, cleaning helps me relax and destress and I could really use some of that now.
Later,
~Pam

How great is our God?

Raisa's infection was identified today as MRSA. WebMD has this to say about this nasty bug.

"Methicillin-resistant Staphylococcus aureus (MRSA) are a type of staphylococcus or "staph" bacteria that are resistant to many antibiotics. Staph bacteria, like other kinds of bacteria, normally live on your skin and in your nose, usually without causing problems. MRSA is different from other types of staph because it cannot be treated with certain antibiotics such as methicillin.

Staph bacteria only become a problem when they cause infection. For some people, especially those who are weak or ill, these infections can become serious.

MRSA infections are more difficult to treat than ordinary staph infections. This is because the strains of staph that are known as MRSA do not respond well to many types of antibiotics-the types of medicines that are normally used to kill bacteria. When methicillin and other common antibiotic medicines do not kill the bacteria that is causing an infection, it becomes harder to get rid of the infection.

MRSA bacteria are more likely to develop when antibiotics are used too often or are not used correctly. Given enough time, bacteria can outsmart antibiotics so that these medicines no longer work well. This is why MRSA and other antibiotic-resistant bacteria are sometimes called "super bugs."

Sounds pretty nasty huh? But the Lord was all over it and led the doctors to give her an effective antibiotic from the beginning. They discontinued the other three, that weren't doing anything and put her on two different ones that they know will combat this strain. She is still in critical condition and MRSA is contagious so her mommy and daddy are still the only ones allowed to see her but we're taking India and Phaedra up tomorrow anyway, to visit their parents. Tony was almost in tears when I told him we're bringing them and we're leaving him the van. Kiki's mom and boyfriend are up there right now and Tony deosn't care for either one of them. I presume he has been stuck at the hospital since he got there while the other three are free to come and go as they please. Unfair to say the least. Anyway, tomorrow is going to be crazy so, night all.

~Pam

Raisa Update

I called Kiki this morning and have some new information.
The infection is in her blood and it may be a combination of three different bacteria, two bacteria that are growing differently or just one that is growing three different ways. They should know what strain of bacteria they are dealing with in the next 24 hours. She is on dialysis to help her little kidneys filter the antibiotics out of her system. Without the dialysis, fluid would build up and they absolutely don't want that. The ball of infection in her chest is being drained and her stomach is draining as well so the pressure has eased on her lungs and heart.
The blood that she was puking up was from an ulcer. Her body was so stressed from fighting the infection that she got an ULCER! Her body was fighting so hard that she wasn't showing signs of being sick until it was almost too late. When she got to Anchorage they induced her coma and she flatlined. They were prepared for it and she was intubated and put on a drug to make her heart beat correctly immediately. It is necessary to keep her under so that her body quits fighting itself while the bacteria just multiplies.
Her extremities are receiving the correct amount of blood now and she is not going to lose any toes or fingers but she does have some spots of pooled blood in her skin that will fall off and heal kind of like frostbite. She is responding to stimulus when she comes out from under the drugs occasionally.
Best case scenario, no major setbacks, she is looking at being in Anchorage for three weeks. Her birthday is in three weeks. My poor Raisa will probably spend her first birthday in the hospital. Right now, because she is so weak and susceptible to germs, Tony and Kiki are the only people allowed in the PICU, other than staff. We're planning on taking the girls up early next week so they can all have family time, even if the girls can't see Raisa yet. And, it appears that both Tony and Kiki are going to stay in Anchorage until she comes home so the girls are with me until then. PRAY FOR ME!!!!!!!! :)
Night,
~Pam