"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Thursday, March 29, 2012

Wednesday, March 28, 2012

More prayers needed ASAP

Katya needs LOTS OF PRAYERS right now. More big problems. Please pray. Mrs. Dueck emotionally and physically zapped and has run out of energy and ability to cope. Not doing well at all. Please pray.

Drainage Tube Removed

Her drainage tube was successfully removed last night, and she did alright. Having a rough day today however...heart rate was way down and they had to hook up a heart monitor. Really tough on all family, especially those seperated from mama and papa right now.

Monday, March 26, 2012

Katya doing A LOT better

Katya doing a lot better this afternoon. She's already off her oxygen, and she was given new meds to help with her extreme anxiety, and also someone's ocming in that is going to do some relaxation therapy with her to help her stay calm. She's enjoying listening to Winnie the Pooh through Youtube and recently has downed 2 containers of applesauce in quick succession!

Morning Update

From Amy -
After a VERY long night which included a lumbar puncture, a CT scan, and tons of labs, Katya is finally sleeping now. PICU staff was VERY upset with how far she was allowed to deteriorate, and after a determind doctor started "kicking people around", so to speak, things started getting done like they should. They gave her meds that took down the swelling in her poor little face almost immediately and she could open her eyes a little an hour later.
Mrs. Dueck still operating on 5 minutes of sleep for the past 24-ish hours. Please continue to pray for all!

Sunday, March 25, 2012

Back to PICU

Copied and pasted from Facebook:
Pretty sure she has pnuemonia now. Moving her back to PICU as they want to have every thing at the ready because they said that with pnuemonia the bacteria that caused it can travel rapidly in her blood stream to her brain especially with her brain so traumatized as it is right now. She's on an oxygen mask because blow by couldn't hold her stats up. The mask hurts her terribly swollen face/head . . . she's still in a lot of pain even though they did get it temp a bit better under control than it had been all day . . . very sick little girl.
From Amy:
Mrs. Dueck's operating on very very minimal sleep, and probably will continue to do so throughout tonight. Please keep her in your prayers, I'm very worried that she's going to end up in a bed next to Katya's the way she keeps going on.

Please Pray . . . .

Please urgently pray for Katya.

She is still having unrelenting pain all day in spite of all that the pain management team is doing. She has about maxed out the dose of pain meds for her body weight, and so they are poring over her chart and trying to figure out if it's safe to change meds completely to new ones. The oxycodine and morphine and Tylenol aren't cutting it at all. She's basically not gotten any rest or sleep the whole entire day and into the evening.

Also, her oxygen sats are down to 91% even with straight oxygen continuously. So they are concerned she may have pnuemonia now and are taking her for a chest X-ray.

She continues to leak a bloody fluid from her right nostril that they suspect strongly is cerebral spinal fluid, so there are concerns there.

I strongly believe that this battle belongs to the Lord, and that none of this is a surprise to Him. I believe that He still has good plans and a good future for Katya, and that the evil one ("mr smutty face" one of my friends once referred to him as) is trying to do all he can to ruin it. Whatever happens, I choose to believe that God is getting the honor and glory through all of Katya's story.

*****************************************
In a happier note, supper was provided tonight by a group from a local synagogue, and served by a very kind and gentle man with his kippah (is that the right word?) on his head, and his daughters. His wife and some others had cooked all the delicious food, and it was completely kosher. Of course, it made us think of our Jewish friend, H. ;-)

Prayers Coming in for Katya

During Katya's surgery, we asked if people would share where they are from if they were praying for Katya and her surgical team. Here's the list that I now want to share with you. If you are praying, and would like to add your location, please do so in the comments on this page. ;-)

COUNTRIES

1. Russia
2. Ukraine
3. Guatemala
4. India
5. Hungary
6. Israel
7. Sweden
8. England
9. Canada (numerous provinces)
10. Mexico
11. Finland

United States Of America

1. Iowa
2. New York (several locations)
3. Michigan (several locations)
4. Texas (several locations)
5. Minnesota
6. Ohio (ALL over Ohio!)
7. Nebraska (several locations)
8. Virginia
9. West Virginia
10. Georgia (several locations)
11. Kentucky (several locations)
12. Wisconsin (several locations)
13. Wyoming (several locations)
14. Maryland (several locations)
15. Illinois (several locations)
16. California
17. Washington
18. Massachusetts (several locations)
19. North Carolina
20. Oregon
21. Florida (several locations)
22. Colorado
23. Indiana (several locations)
24. Missouri
25. Kansas
26. Pennsylvania (several locations)
27. Louisianna (several locations)
28. Montana
29. Oklahoma
30. Arizona (several locations)
31. Hawaii
32. Arkansas
33. Alabama

Saturday, March 24, 2012

Long Overdue Update


After Katya being under General Anethesia for almost 12 hours on Wed, starting around 7:30 AM, we were finally informed around 7:30 by Dr. Dorafshar that she was out of surgery and had done "amazingly well" in how she tolerated all the blood loss, meds etc. He further told us that he had been able to get done all that he had set out to do, which was very good news indeed! That meant that among other important things, her eyes should be now lined up which will improve her ability to see nicely just a bit. The Drs. were very pleased, in spit of their exhaustion, and Dr. D's pleasure showed greatly when he further infomred me that he'd been able to do Katya's surgery without shaving or cutting a single one of her little blond hairs!!! There's a long back story behind that but for now, just know that if there is a patient sensitivity award or recognition that Johns Hopkins has, Dr. D. totally should be given one! He went way, way out out of his comfort zone to do that for Katya to try to help her emotionally. I would HIGHLY recommend Dr. D. to any parents who need a top notch plastics guy. Tell him that Katya's Mom sent you. ;-) (Yeah, there is a story behind that too but I don't have time or energy to type all of these stories!)

Initially Katya was progressing rapidly in her recovery. She was doing sooo well that they hoped she could be discharged from the hospital today. However, a number of things collided together to not only impact Katya horribly on a very deep emotional level, but that in turns seemed to set off a cascade of issues that impacted her forward progress physically.

Even though she was moved from PICU to a regular floor THURSDAY afternoon--which speed Dr. Carson told us was almost unheard of after the ordeal she'd been through the day before, her progress on the regular floor has been very slow. But thanks to the help of the top-notch nurses around here, who are thinking outside of the box, being super patient and sensitive, and advocating for Katya in every way they can, I have hopes that we may have turned a corner now as of Sat. evening and be headed the right direction. Time will tell.

In the meantime, know that we deeply appreciate all your prayers and supportive comments . . . Dr. Carson told us that he truly believes it was the prayers of everyone that enabled Katya's surgery to be a sucess. He truly had deep concerns about whether or not she would make it through alive.

He is very hopeful that once she is healed, her life will be so much better quality for her in terms of pain--he doubts she ever had many, if any, pain-free days in her little life . . . .

Katya's story is impacting everyone that comes in contact with her around here it seems. We see it in the tenderness in the eyes, and some of them in the way they say, "Thank you for what you have done. It's a good thing." I saw a qoute on the wall while walking out of here once that said something like this: "He who saves one life is considered to have saved the whole world." I believe it was a qoute of someone who was Jewish, and in fact, reminds me very much of the Scripture verse that says something about one soul being worth more than the whole world.

So, yes, we helped save Katya's life, but honestly, we couldn't have done it alone. There have been many, many people involved over the last couple of years--people who prayed for Katya to find a family, people who gave, people who prayed for us, and on and on. And even now we deeply need the prayers and support of her friends and fans who are loving her and praying for her and for us!!! We are grateful for the Aaron's and Hurs who love Katya and are holding up our arms as we help fight for her and her future. I don't know what God's plans are for her life, but I have NO DOUBT that after the strong battles we have seen and felt, that it's a good plan, and a good future. As Dr. Carson said the day he first met her, "I believe some day she will amaze the world." Yeah, she's been doing that already!!! Our little Ukranian Princessa . . . amazing some of the world's greatest Doctors . . .

Wednesday, March 21, 2012

Alive and well

After 9.5 hours of surgery Katya was officially out around 7:45. She's alive and well, still in PICU as she will be for a little while.

Still in surgery at 5:15 pm

Please keep praying for wisdom, strength, and alertness for the team, and for Gods will to be done for Katya.

Booby Traps

Dr Carson just called. He said, "We are still operating. Katya is tolerating it AMAZINGLY well! There are a lot of booby traps in there, so keep the prayers coming." I said, "We are taking a roll and you have prayers coming in from all over the world!" He said, "Tell them, Keep those prayers coming!"

Time now: 2:45 pm.

Update . . . .

Around 12:00 pm. we got a call that Katya is still in surgery, and "she is still doing fine."

Thank you for continuing to pray!!!

Just for interests sake, and also because maybe someday Katya will want to know, if you are reading this do you mind sharing the country you are from, or if in the USA, the state? We are doing it on our Facebook page (personal one) also and if we can will compile a list and share it eventually.

Thanks and God bless, and thank you for praying for the Great Physician to continue to be present in the OR in such a real way that EVERYONE knows it.

The Long Vigil Has Begun

Yesterday Katya and we met with Dr. Carson. After the huge obstacles, along with many more "minor" obstacles, and the outright attacks our family has gone through during the time leading up to Katya's surgery, it did not surprise us entirely to have Dr. Carson share that he was alive and talking with us only by the Grace of God. On his way to the hospital yesterday morning he was broad-sided by a car--"I nearly was killed. Only my airbags saved my life." When we shared with him that we have felt like the evil one is on the rampage trying to prevent Katya's surgery, his face grew very sober, his lips pressed tightly together and he nodded with the understanding of a man who was also feeling the heat. "We will win" he said, and I believe that. I don't know what all God's plans and purposes are for Katya and our family during this time, but I believe that they are huge or the evil one would not be attacking so diabolically. As Dr. Carson shared yesterday, "I will do my best. Whether she lives or dies is up to God." And we truly believe that. Katya has been preserved by God this far--she is in His hands.

We thank you for praying along with our family as the long vigil has begun. I was with Katya till she was asleep and then kissed her and left her in the hands of the team Dr. Carson picked to work on her. They need your prayers, Katya needs your prayers, and our family will greatly appreciate them.

Also, just a interest sake thing, Katya's case is so unusual that Dr. D. asked us if we would consent to allow any--some--or all of various things such as videotapes of the surgery, photos before and after, etc. to be used as teaching tools to try to help educate other Doctors. We are agreeing, because we hope that as more kids are saved from orphanages there will be more Doctor's equipped and prepared to deal with the challenges they will be presented with by the kids who were so long neglected.

Tuesday, March 13, 2012

"PUH, PUH, PUH!" and a Prayer Request

We are so excited to tell you that late last night, Katya was able to successfully make a "P" sound for the first time ever!! She was SOOOO cute today going around spitting it out at random! Sometimes she couldn't get it and other times she could. But it was neat to see how hard she tried, again and again and again.

When she first came home to us, if we would try to coax her to make a sound, she MIGHT try--once--very, very quietly under her breath. If she couldn't get the sound the first time, she wouldn't try again.

Gradually, her interest in trying to make the sounds became strong enough that Katya would try once, then twice. As more time went on and we continued to applaud and praise any and all attmepts, her confidence grew a little and her attempts became a little louder and she tried a little more often. Now she walks around freely making what sounds she knows, and has even started coming up to us, holding up her arms to be picked up and saying, "Uhh! Uhh!!" So if we can just get her to combine her excellent "UHHH" with her newly developed "Puh!" sound, she will have conquered her VERY FIRST WORD EVER--UP. Wouldn't that be sooo exciting??! I think so!!! And I bet Katya would too! Praying that the day comes soon!! Will you join us in praying for that as well?

Also remember to keep praying for Katya's health and for the details that need to fall into place for us in terms of lodging while in Baltimore etc. all fall into place. We would very much like to stay at the same place we did last time for a number of what feel to us like very legitimate reasons, so we are praying for that, according to God's will.

Monday, March 12, 2012

A Hump, or a Bump in the Road?!

Well, after sitting around in the Doctor's office for well over an hour today before we got taken back to a room, we found out that Katya had a very low-grade temp--99. We knew she'd been a bit snuffly the last few days but assumed it was allergies (and it may have started out all that way originally) since she battles with those a lot. We were faithfully giving her allergy meds and extra Vit C. etc.

When her Doc tried to check her ears, she instantly tried to guard them with her hands and was dodging every which way trying to keep him from being able to look in. Since she's normally fairly cooperative about a medical exam as long as she's not scared or in pain, we all began to wonder if something was wrong. Sure enough, after I finally got her gently pinned down enough on the table that Dr. J. could get a look in both ears, they were both red and unhappy!

No one was happy with that news, because it meant Dr. J. couldn't sign off on the all-important pre-op physical exam paper for Dr. Carson.

After some discussion, it was agreed that Dr. J. will check her "one last time" late Thursday. He's hoping that the meds he prescribed will do the trick QUICKLY and that Katya will be fever-free, and have nice, normal healthy ears again! Since she'd been amazingly sweet today (even at school!) how were any of us to know she was sick?!

After FINALLY getting out of the Drs office around 5:00 pm (her appt. had been at 2:45 pm. (!~) ) we headed back into town to the hospital. Got the required labs done there (poor thing--she got so fearful and cried when she saw the nurse getting her gloves on and the needle out, but she obediently held out her little arm and cooperated really well this time even though she shrieked and sobbed till the nurse drew out the needle). After we were done at the hospital we dutifully made our stop at the pharmacy.

That ended up being a long wait and a hassle. Long story short, we were finally told that information is evidently missing from our insurance company which ended up making us have to pay money we weren't supposed to have to pay for Katya's prescription. I'm not a happy camper at having one more thing to have to deal with tomorrow, but a phone call MUST be made to get to the bottom of this.

By the time I dragged my weary self home it was 7:00 pm.--and I had left the house at 2:00 pm to pick Katya up from school. (And yes, if you wonder why a Mama of special needs children feels constantly behind on her work and life . . . that gives you a good clue as to part of the reason WHY! Please keep that in mind the next time I show up looking harried and rather unkempt, or the next time you stop at my house and find dirt and clutter in far, far too many corners!)

Since Charity wasn't feeling well, and I didn't want to ask her to make supper, I still had to throw supper together . . . and then it was a mad race to try to get children into bed. Katya got in really late by the time we got her bath, meds etc. all done and I spent time cuddling her. Good thing she isn't allowed to go to school tomorrow anyway, as she'd be too tired to go! As for this Mama, I feel really exhausted myself and would love nothing more than to be able to sleep in as long as I wanted but I don't suppose that will be happening . . .

In the meantime . . . pray for this hump or bump or whatever it is in the road to be removed if Katya is to have her surgery next week!

Pre-Op Physical and Labs

Today Katya will go to our family Doctor for her pre-op physical. This is a complete exam of all body systems and a very thorough heart and lung check. In order to hold up to the stress that surgery is going to impose on her little body, every thing needs to be in top working order prior to surgery. After we are done at the Doctor, we go to the hospital lab for a big blood draw. There are many factors to consider before going into such a risky surgery, and everyone wants to make sure that no bases are left un-checked for any signs of potential problems.

On our end, we have been doing everything we can to try to make sure Katya's body is in optimal health. Lots of good fresh fruits and veggies, plenty of other nutritious food, lots of coconut oil for it's healthy fats and healing properties, chlorophyll to help build her blood supply as strong and healthy as it can be, and so on.

And while all that is right to do and what we should do as good parents, we know that ultimately, what matters most is that God keeps His hand over Katya. And He is. And He will. I am choosing to believe that.

So I grit my teeth and march on through this--I hate taking her to be poked again. When we first brought her home she would cry quietly, hold out her arm and hold still for blood draws. After she had an IV with general anethesia for her MRI scan, she has been in an absolute panic about needles, and it takes her Daddy's strength to hold her if a needle is in sight, poor girl.

Thankfully, when she had her ICP monitor surgery, the staff put Katya to sleep with gas while she laid on the OR table and I was there with my arms wrapped around her, talking to her, and the Russian interpreter was there (at my request) talking to her and telling her all the nice things the OR staff was saying about her! She went to sleep quite easily and calmly. Then they started the IV and kept her under via IV. I'm under the impression that is the usual method pediatric patients at JH so I would expect the same this time. So hopefully the blood draw for labs today is the last poke she is awake for, for a long, long time. (And hopefully Katya will feel calm and safe and go to sleep easily this time as well! Please pray for that!!!)

Thursday, March 8, 2012

Two Doctor's Who Need Prayed For

Dr. Benjamin Carson

Benjamin Carson

Link to more info here: http://www.hopkinschildrens.org/Benjamin-Carson-MD.aspx

And Dr. Amir Hossein Dorafshar

Link to more info (and photo) here: http://www.hopkinsmedicine.org/doctors/results/directory/profile/0535944/amir-dorafshar

These two physicians will be leading the team working on Katya on March 21st. Pray for health for them, for clear eyes and steady hands, and for much wisdom and discernment for each of them. And I pray the same for all the rest of the team who will be involved.

I know Dr. Carson is a believer and prays. He told us when Katya had her ICP surgery that he feels the difference when he is operating on a patient who is being prayed for versus one who is not. I don't know exactly what all "difference" he feels, but as a Christian myself, and having felt the power of prayers, I believe he does feel a difference. How awesome to know that he prays for his patients before surgery, and while he is operating on them! I know Katya will be in the best hands that she can be during surgery--God's and Dr. Carson's. I don't know so much about Dr. Dorafshar but I do know he's been hand-picked by Dr. Carson for Katya's surgery, and that gives me confidence. I also liked his attitude toward Katya when he met her in the hospital back in November, and he totally won my Mommy heart when he said, "What was allowed to happen to her was a travesty of justice!" Indeed.

The good news is that I believe God has orchestrated every single teeny tiny detail of this, all the way from preparing Dr. Carson many years ago to become a surgeon, to impressing it on my heart that we were to try to get Katya seen by him, even though we didn't know *why* at that point for sure, to opening all the doors for her to become one of his carefully selected new patients (he only sees a very few new patients each year).

And when I'm tempted to panic and to let fear sweep over me like an ocean, I have to look back at each of those steps . . . and realize that if this is all in God's hands, then I need to trust that only what is best for Katya and for us is going to be allowed to happen by Almighty God. Nothing about Katya has escaped God's attention. Not one single tiny little detail. He knows every single strand of her beautiful blond hair. He knows exactly what is going to happen or not happen to Katya (and all of us).

Tuesday, March 6, 2012

Preparing for Surgery

On top of all the things like scheduling pre-op exams/labs, setting up child-care arrangements, and trying to get our 2011 taxes all wrapped up and many other things before we head out of town, we have worked with Katya's speech teacher to make a pre-op book for her to try to explain in a simple format what is going to happen.

We had already asked her to do that before a kind blog reader suggested it as well, sharing how well it works for her children. When I read her comment I was glad we already had that idea in the works!

Behold a few sample pages from the book! (there are more--just giving a few examples).

Cover

Interior pages, all nicely laminated!

I very much appreciate the hard work Katya's speech therapist put into this book.

And while it may seem very simple--maybe even TOO simple--this is the level Katya is at.

And of course, the all important GOING HOME! We don't want Katya to think she's stuck in the hospital forever!

Hopefully, between the multiple readings of this book, and the Russian interpreter at the hospital, we will be able to help Katya understand the basics and keep her fear down. We also are planning to put together a CD of some music that she likes and have that for the staff to play for her especially during recovery before we are allowed to be with her. (Break my heart . . . I think that at least one parent should be allowed as soon as they are out of surgery and moved to ICU but it doesn't work that way inspite of my groveling!!)

Monday, March 5, 2012

Suffering

Yesterday, our pastor, Dave, preached on Suffering. I don't like suffering, do you? Dave pointed out that likely none of us do--we all want to have good days at work, a good supper, and happy, peaceful conversation, a relaxing evening, and a restful night's sleep. When we don't get what we want, it's easy for us to get irritable, grumpy--or even down-right angry! Dave explained that suffering causes us to grow though in ways that we would never grow if we didn't experience suffering. We are stripped of our own ideas and forced to look hard at life from God's perspective. We learn to draw deeper from God's strength, rather than relying on our own. We re-evaluate our priorities in life, become wiser, and hopefully better, not bitter, people. Through suffering we are refined, purified, and hopefully grow more and more towards the person God wans us to be.

I thought Dave's message was timely for me. . . . This preparation for Katya's surgery feels painful. Thinking about being separated again from my children feels horribly painful. Sitting for hours in Baltimore while Katya is in surgery, without family or friends with us for support feels painful to even contemplate. The uncertainty about the out-come of Katya's surgery is the most painful of anything  . . . will she live through the risky surgery, or will our hearts be ripped in two? And if she lives, will she be changed only for the better? or will there be changes for the worse that will cause our family to suffer more?

Even though we CHOSE to sacrifice and change our lives to bring Katya into our lives doesn't mean that suffering doesn't make us feel tempted to whine sometimes. We are not some sort of super-humans! Even though we are glad beyond words to have Katya with us doesn't mean that we don't MIND some of the painful changes that Katya's presence has brought into our lives. To love Katya means we also suffer pain . . . I have shared some of the ways on this blog. Others are private, quiet pains we suffer as a family. I'm proud of my kids--proud of my husband. They have chosen to embrace Katya and all that her life with us means--both the joy AND the suffering. And because we have chosen to embrace life with Katya and all that it means, we have love and laughter along with the pain and tears. We have God to walk with us during the hard times, the lonely times, and the times when tears fall. We have God to walk with us when we laugh for joy, and when we beam in pride at her latest accomplishment! I think He radiates joy at those times too!

With God's help, I want to continue to choose to embrace all that life with Katya brings.