"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, May 31, 2012

A Little More About the Hospital Stay--Part One

All photos that were snapped through out the hospital stay on Paul's or my phone . . .

This is Katya on March 21 (Wednesday) soon after her 9.5 hours of surgery, 12 hours under General Anethesia. Before I was allowed back in PICU, staff thought she was getting agitated and might start pulling out her lines, so they put restraints on her arms. I was able to advocate for Katya and get them removed, if I recall right, before I left around midnight. (Katya's Daddy came and traded off with me so I could get a little sleep--we did **not** leave her alone in the hospital!!!!!! And in fact, Dr. Carson once, towards the end of her stay, commented to me that he was happy to see how we stayed with Katya, and said that he was sure our presence was very necessary to her  . . . We firmly concur.)


This photo was taken soon  after Katya was out of PICU for the first time. Although she was moved out of PICU less than 24 hours after surgery, astonishing every one, she was dazed and emotionally wrung out after the removal of the majority of the tubes and wires and needles from her body, and had shut down emotionally.  (Please note the pressure bandage on her neck had started to peel and loosen--it was necessary after they removed a very large arterial line from her neck before moving her out of PICU). You can note my (second hand) IPad laying beside Katya on the bed. The IPad was such a help for Katya as it kept familiar and comforting music always close by to her! It also allowed me to stay in touch a bit through Facebook with our prayer warriors!!!

The photo below is March 24th, when Katya's swelling was taking over her face. She was starting to feel enough better she wanted to sit up and play Legos with a lot of help from Charity, even though she could only see through the merest tiny crack of one eye. By the next day, Sunday, she was in the dangerous spiral of events that nearly cost us her little life.


#1. She was allowed to become severely dehyrdated, even though on IV, to the point that for several weeks afterwards it was feared she had permanent kidney damage. Thank God that did finally clear up, in answer to many prayers, I'm sure!!
#2. Katya's swelling was allowed to go out of control, closing down her throat and lungs, and the plastics residents who were responsible for her care all day on Sunday while her two surgeons were out of the hospital, were too inexperienced and un-trained to recognize what was going on, even though I kept challenging them about the "clucking noises" she was making in her throat, the fact that her oxygen levels were steadily dropping, and that the swelling was going clear down her throat to the point she had no neck really any more!
#3. Katya's surgical drain tube that exited her skull behind her ear was allowed to clog, stopping the flow of blood and fluid from her head, increasing her pressure and pain to epic proportions.
#4. And last, but not least, her pain become so out of control that she could not rest or sleep for hour after hour after hour that horrible Sunday the 25th. She moaned, she cried, she signed "help, owie!" over and over again that horrible, terrible, no-good-awful day and into the night.

I have no photos from that 24 hour period that I was awake with her . . . I wouldn't have wanted to take any, as she was in such agony, and hardly looked human. The swelling was so bad that it can best be described by saying that she looked an awful lot like a victim of anthrax in the last stages. It was pretty tragic, and there are NO pictures of her during that terrible day and night. Her eyes were so swollen shut that the lids overlapped, she had no neck, and she frankly was hardly recognizeable. In fact, the PICU Doc, Dr. Carina,  who had discharged Katya mere days before told me later that she truly had NOT recognized Katya at all when she showed back up in PICU at 1:00 am that Monday morning in acute distress, with her heart all tachy, and in respitory distress. She recognized me, but could not tell who was with me, and when it dawned on her that it was Katya, the horror she felt could not be entirely disguised from her face, nor the anger from her voice as she stared at Katya, and then at me, and then back to Katya and then ground out with controlled anger, "WHAT happened? WHO let this happen to her?!" [Edited to add that at one point, Dr. Carina looked at me, and said, "I'm sorry, but I need to tell you that if Katya codes, right now I am not sure I can even get an airway established due to how swollen her airway is." Those are NOT words any parent wants to hear, but I'm thankful that Dr. Carina was honest with me through those hours when she was fighting for Katya's life . . . and as God willed it, Katya lived in spite of Satan's attempt on her life.]

That experience has left me forever impacted and I will never ever approach any hospitalization of any family member ever the same proably. I became known after this as the "Mom who put her battle armor on" around the hospital. The residents got no lee-way from me, and had to prove themselves to me personally from that point on. Hopefully more on that some other day. Let's just thank God that when the residents finally DID decide that her needs were more than they knew how to handle, that there was a real Doc up in PICU who knew how to roll heads, and make things happen, as well as being blessed with the ability to listen to the Mom and make smart decisions. With God's help, she saved Katya's life and had her stable in a few hours time. Thank God for Dr. Carina and her awesome staff of nurses!!! Three cheers for them! (I wish I had a photo, but I do not. . . . What made it even more special?? Dr. Carina was from Romania, and "got" more than anyone else in the hospital seemed to the horrors of Katya's background before she was with us and took steps to try to work with us to help ease the trauma she was experiencing from all the scary, painful and terrible things that she went through in the hospital.)

After Dr. Carina got Katya's swelling down within normal limits, she could wear her dearly beloved polka dot glasses again!
She would solemnly put them on, pull the blankets uip and settle down to sleep at night in PICU. The nurses loved it, and would call other nurses to come over and look at their little Diva! ;-) I think it put a much-needed spot of COLOR and a bit of humor in their days and nights.

--To Be Continued


Monday, May 21, 2012

Patent Foramen Ovale

When we were adopting Katya, I did much polite requesting to be allowed to speak with one of the orphanage  doctors about Katya. Excuse after excuse was given, and week after week went by without my being allowed to do so.

After much begging, pleading, and finally my putting my foot down so firmly that the facilitator could no longer ignore me (after all, I finally said I was *not* leaving Ukraine until I was allowed a chance to speak with one of the orphanage Doctors, so they finally were motivated to get that over with and done so I would get out of their hair, I guess!) I was finally given a 15 minute translated conversation with a orphanage Doctor. The facilitator's command of English did not reach to a speedy discussion of medical matters, so think how VERY little time I had to receive info! Much, much less than 15 minutes worth of info was all I got! (Yes, I am still very unhappy about how all that was handled, and it's the reason one of many reasons you will not see me encouraging others to use the non-profit group that sent our family to the facilitators who were responsible for Katya's adoption.)

Sadly, Katya's medical file was several inches thick, but there was very little that we found out, and even though I begged and pleaded in English for copies of the info in the file, either that request was not passed on to the orphanage Doctor, or they didn't feel it was important to give us anything much of worth beyond what was required by the USA Embassy.

However, the one thing after much struggle and discussion back and forth and agonizing over how to translate it that we were told was that Katya had a "difference in the stomach of her heart!" To myself, I wondered, "Chamber?!" but I was solemnly assured repeatedly that her "stomach of the heart" was just different than usual, but would never cause any problems in all her life and that Katya didn't need surgery for the "stomach of her heart".

After we got her into the USA, we made sure to repeat this little tidbit to all the Doctors who saw Katya. Everyone of them would listen carefully to her heart, shrug, and then tell us that they heard nothing but a nice, healthy heart. I was always surprised that even when she was going to be given general anesthesia not one person took my little story seriously enough to order an ultrasound of Katya's heart.

It was not until Katya's heart rate began going lower, and lower, and lower still while she was in JHH that finally an ultrasound was ordered after I repeatedly shared that little story with the hospital staff who kept coming around to listen to her perfectly normal, but super-slow heart. Shortly before Katya was moved up to PICU with her heart rate at only 40 to 43 beats per minute, an ultrasound machine was wheeled into her room and and an ultrasound of her heart was done, along with repeated EKG's.

All the testing showed was that the Ukrainian facilitator's attempt to translate the Doctor's information about Katya's heart was actually not that far off. Katya has a Patent Foramen Ovale. You can read more info about it here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002102/   Thankfully it's not anything we need to be very concerned about at this point in her life, and it will hopefully only require occasional monitoring.

Thursday, May 10, 2012

"Katya Is Going to Be a Dentist!"

Today Chad came walking up to show us that he had a bottom tooth laying almost completely horizontal in his mouth. Katya peered interestedly at the tooth, and then keeping a careful eye on Chad's face, reached very slowly towards his mouth with an expectant look on her face. She tweaked that tooth, and Chad yelped and ran away! She looked so crest-fallen that we told Chad that we thought she really wanted to help him get the tooth out, so he came bravely back over, opened up his mouth, and stood still. Katya again reached out slowly and deliberately, while watching his face, and then twitched the tooth so fast that it fell to the floor with a little "ping" before Chad even realized it was out! Katya scrambled for it and was going to head to the trash can with it, a VERY satisfied and happy look on her face, but we stopped her before the tooth ended up in the trashcan since Chad loves to keep his teeth.

Chad then ran upstairs yelling, "Todd, Todd! Katya is going to be a dentist! She pulled my tooth out!"




Thursday, May 3, 2012

"But You Choose This!"

My friend, Leah, has said what needs to be said, better than I could have. I'll just link you to it:

http://gardenofeagan.blogspot.com/2012/02/but-you-chose-this.html

One of the saddest things for us as a family has been how some people have eased out of our lives after we committed to adopting Katya. People who were even reasonably supportive of us when we adopted Kristina have walked away, disengaging themselves . I think because we had the "perfect family of two boys and two girls" they couldn't see why we would go on to adopt Katya, felt that we were totally crazy for taking on another child, let alone one with a high level of special needs, and during tough economic times on top of it too! To them it seemed like such a brand of crazy that they didn't want to be associated with it. My guess is that some of the ones who eased out of our lives possibly felt a pricking in their own consciences and it was easier to avoid us than to listen to where God might be calling them. I don't know, because I'm not God, but I'm guessing that some of that could have been involved for some of them.

Even though we have "holes" in our hearts and lives from the ones who walked or eased away, God has been sooo gracious to us to be raising up new friends, and a new support net-work. I love seeing how Katya is being loved by all kinds of people all over who are arising and being God's hands and feet to her and our family! Many of you are long-distance, but you are real friends to our family . . . a real support net-work of prayer and encouragement. And importantly, God is raising up people locally who are standing with us, helping with baby sitting, giving us a hand now and then around the house to catch up on things, praying with us, and doing whatever they can to ease the challenges our family faces. We feel very grateful. We know that many of our adoptive friends do not have this support.

I will be forever grateful to the friends in our homeschool group who have come alongside our family during our journey to Katya, and who are still standing with us. I will be forever grateful to our family Doctor, a homeschooling Dad himself, who lays hands on Katya and prays for her many, many of the times we go in to see him. I will be forever grateful for the family and friends we do have who love Katya deeply and pray for her and our family.

I will be forever grateful for the packages and cards that have been coming in for Katya and our family. They help cheer her days, and ours too! And yesterday, we got to see a new behavior that was so encouraging when a package arrived! Katya began grinning, and jumping up and down with excitement as she watched me opening the package! It was clear that she (finally) realizes that good things can come in plain old brown boxes!! And was there something good in there for her? Oh yes! A online friend that we have not met (yet) who has been extremely supportive of Katya's adoption journey had blessed us with an super fun box full of wonderful things! Look at what greeted us when we popped the top open!


Lots of yummy spices, CHOCOLATE (yes, I have indulged in chocolate heavily the last year--more than I ever have before in my life--it's my "drug of choice" at this point in my life, and it's working, thank you!), Starburst Jelly Beans (made for a VERY happy Katya, Kristina, and Chad!) and white eyelet fabric which I adore and I just know Charity and I will have fun making something beautiful out of it eventually!

So yes, we choose to adopt Katya. Yes, we choose to accept whatever life threw us with her. It doesn't mean that it's not hard. Doesn't mean that it's not exhausting. Doesn't mean that it's not expensive. Doesn't mean that it's not changed our family and what we can involve ourselves in and what we can do as a family dramatically. It's hard, it's exhausting, it's expensive, it's limited our ability to go places and do things that "typical" families can do. But we are DOING IT because we LOVE KATYA and we are GLAD she is alive and GLAD she is no longer being neglected, starved and abused. We are GLAD she has a Mommy to rock her each night, and a Daddy to toss her gently up and catch her, and a Big Brother to give her piggy back rides, a Big Sister who lovingly teaches her how to sign, and another Big Sister who takes pride in helping pick out pretty clothing for her each day, and is teaching her with unfailing patience how to ride a bike, and a Little Brother who still loves Katya each day no matter how many times she pinches or scratches him. Yes, we are glad she is part of our family, and we love her, even though she's throwing yet another tantrum. And we are doing this, even though there are times we sit down and cry together in sadness and exhaustion. And we will continue to do this. Because God called us to do it and we love to obey Him and we love Katya. And you know what?? We are glad that many people are loving God and obeying Him and are loving Katya with us. We are glad that you are being our Aaron's and Hur's, holding up our weary arms before God so that we can continue to do what needs to be done to best meet Katya's needs.

And . . . if you are not called to be one of our "Aaron's and Hur's", find another family who is adopting or has adopted, and be THEIR Aaron and Hur. They will appreciate it. And you will be blessed, I'm pretty sure. Because it just works that way . . . just like we have been blessed by adding Katya to our family. Blessed with her lovely giggle, her beautiful blue eyes and blond hair, blessed by seeing her learning things she never knew before--like plain old brown boxes being a potential treasure trove of goodies! Blessed in so many ways.