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

Dr. Ben Carson on Katya Dueck

Sunday, June 24, 2012

A Set Back

I am not finding much time at all to blog--VBS, a special event for Father's, and just LIFE is keeping me busy.

I do want to let Katya's friends and supporters know that she has had an apparent set-back. Evidently a surgical plate in her skull slipped or popped  loose on this past Tuesday. About an hour or so after it happened, she vomited. It took a few hours till her plastic surgeon was out of surgery and could call me back--actually, it was just after midnight when he was able to--those were some long hours waiting.

He said it does sound as though there were issues with the plate, he believes the vomiting was connected, and he wants to see Katya on Thursday to try to assess the damage. He said that it's entirely too risky to even contemplate surgery any time in the near future so if more surgery is needed, it will be at a later date.

Please continue to pray for Katya and our family. This has felt like a bit of a blow coming so soon on the heels of such good news at her other appointment, and none of us are thrilled about dragging back up there again this week. It is hard to have her Doctors so far away from us, but it is what it is, and we will do whatever it takes to get her the care she needs.

In happier notes, we added up this past week how many signs Katya now uses to communicate with us fairly easily. She has right around FIFTY signs plus her alphabet and numbers 1 to 10, and then a handful more signs she knows but doesn't tend to use without prompting. How fabulous and amazing is that when a year ago she had NOTHING except the start of learing how to sign "more"? The last while Katya has just really been taking off with using her signs to communicate, and she is even telling us now when she is scared or happy! Today during lunch she signed several times to me with a faint smile that she was "happy! happy!" When I would say, "oh, are you happy, Katya?!" she would look satisfied and go back to eating.

And . . . Kayta helped Kristina shell peas on Friday, and a good job she did too! I have proof!

Then she enjoyed eating them in the salad we had for lunch! Oh it was good to have fresh peas again! Sadly, due to the extremely dry weather we are having, our garden is not giving us much, but we are still thankful for all that it is. And I'm glad that it gives Katya the chance to learn new skills, as well as a greater understanding about the process of food growing, harvesting, and preparing.

Thursday, June 14, 2012

Post-Op Check-up!

We were back in our "old stomping grounds" this week as Katya had her post-op follow-ups. Monday she saw Dr. Carson, who pronounced that Katya "looks like a million bucks!" He was extremely pleased overall with how well she looked and with every thing we could tell him about her progress since he had last seen her back in early April. It felt good to touch base with him again. Kristina was thrilled to get to meet Dr. Carson, and asked him to autograph the copy of his book, "Gifted Hands" that she had carefully been saving up all her money to purchase for that purpose!

Tuesday Katya saw Dr. Dorafshar who was also fairly pleased with Katya's progress. The only area of possible concern at this point is that it seems one of the absorbable plates that was placed in her forehead has the edge of it pushing outward the last few weeks, creating an unsightly ridge. Dr. D. said that he will not get excited about it unless it is still that way at the 1.5 year mark post-op. Then Katya would probably have to have surgery to remove it. But hopefully we won't have to ever cross that bridge. No one even wants to think about surgery with her again after all the complications post-op.

We also found out that neither Doctor had been entirely sure that the surgery they had done would be sufficient. They were concerned that the back area of her head would not expand any further in spite of their best attempts, and that she would have to undergo an extremely risky surgery to try to give Katya's brain more room. To their great delight, both Doctors concurred with us that even the part of Katya's skull behind her incision line has grown a good bit higher, AND wider since the surgery. They both feel that unless complications come up, she is done with the surgery she needs now to give her brain the room it has been urgently seeking for all these years! We are truly hopeful that is the case, and are very grateful to God for leading their minds and hands to take the correct steps that seem to have resulted in this (so far) happy ending!

Dr. D. took many photos of Katya, attempting to get a few that can be used in a report that will be printed in about a year about her case. Not only was her case unique due to her age and the severity of her craniostenosis, but Katya also was one of the first patients he used a new computer program on to create a model of how her skully currently was pre-surgery AND how he wanted it to appear post-surgery, along with mapping out exactly where and how they would need to cut and re-arrange her bones. He also would like us to send him some of the photos we have of Katya as a younger child for possible inclusion in the article. We are hopeful that Katya's story, and all that she had to suffer before she had treatment, as well as all the pain and sorrow she went through post-op will not be wasted--that it may some day help save another child's life, or improve their quality of life due to the things that were learned on her case, and how it will be used as a teaching tool.

Dr. Carson said that he is going to be very interested to follow Katya's progress over the next couple of years. I pointed out to him that he will be completely retiring next year, and then how would he know what was going on with her? He assured us with his genial smile and twinkling eyes that we need not worry--he WILL keep tabs on her and will be getting regular updates about her because he is so curious to see where she goes in life. I was deeply touched by this, and to me it speaks volumes about how Katya has touched the lives of the people she comes in touch with, as well as Dr. Carson's intense interest in her.

The great news is that Katya is on her final step-down dose of meds, per Dr. Carson's orders, and very soon should be completely off of them after daily meds ever since her surgery on March 21st! (well, she still will be on her allergy meds, but those are relatively uncomplicated, and don't require weekly labs and so on).

And the VERY best news of all?! That is that Katya needn't come back again until March 2013 unless some complication arises! Yippe! We love her surgeons, and find Baltimore an interesting city, but we truly won't shed any tears about this advancement in Katya's health status! ;-)

Thank you again, all of you, who have been praying for Katya and our family and supporting us in so many ways on this journey with her . . . we continue to need your prayers and support.

Wednesday, June 6, 2012

Hospital Stay--Part 2

Katya had arrived around 1:00 AM back in PICU after nearly being allowed to die down on the floor due to the incompentence of the plastic's residents. The horror and shock that the PICU staff felt, and then their disgust as they discovered one preventable issue after another was what was killing Katya, could not entirely be hidden, although they were professional and efficient. Poor Katya was surrounded by a literal swarm of nurses and doctors as they took blood in little pipettes from her little toes for special testing, and did other tests. Unfortunately, she was so badly dehydrated that the blood kept clotting before they could get what they needed, and it became apparent that another IV had to be inserted, so poor Katya, unable to see what was going on, had to get stick after stick. The Dr. explained to me that until they could figure out for sure what was going on they did not dare give Katya any more pain meds, as she was in great danger of coding.

Again and again Katya bellowed feebly in pain and terror as she had been doing hour after hour, and they kept talking about how "irritable" she was led them to suspect that she had spinal meningitis. I told them that I doubted that she did--that she was simply in terror after being unable to see, and having what to me was clearly out of control pain. I could understand why they had to consider it, but I had complete assurance that Katya did NOT have meningitis, and it was clear to me by now that my Mommy instincts about her swelling had been dead spot on, and therefore I was trusting my gut on that one too.

As the nurses were rapidly cleaning the soiled bed linens from her bed, including pitching one soggy pillow into the trash can after giving each other looks of dismay and disgust, one of them spotted Katya's surgical drain. After calling Dr. Carina's attention to it, Dr. Carina's face got a even sterner look and her lips pressed tightly together as she marched off briskly to the phones as she spit over her shoulder, "It's clogged!" In minutes, the young resident who had been responsible for Katya's care the last number of hours showed up, and began manually stripping the clear plastic tubing. As he stripped the thick and dried out "gunk" from the upper part of the tube, down the tube towards the collection point, it, it was obvious that there had been a HUGE clog, and that now fluid and blood were starting to come back down out of Katya's head. Did he apologize? Did he thank Dr. Carina for catching his grievous error?? No, he had the audacity to stand there in front of Dr. Carina, in front of the PICU nurses AND in front of this quietly furious Momma who had watched her daughter suffer unspeakable horrors hour after hour and say, "See, it's NOT clogged."

Not one word was said by any of us, but the grim looks on ALL of our faces should have given him a clue that he had mis-stepped one time too many. When you are a lowly resident, you do NOT stand there and try to prove your righteousness in front of that many witnesses who have seen that there was clearly a clog and that there was clearly no free drainage from something as important as a surgical drain tube in the head of a post-op child. Never. And you especially don't do this when you have allowed the child under your care to become SEVERELY dehydrated while on an IV, and to have been one in a string of many residents that day who allowed her swelling to into dangerous, life-threatening levels when the Mom is challenging you all day long . . . nor do you allow the child's pain to go out of control while you stand there and say things like, "We don't want to say that there are zebras on the loose when it's really just horses." No, you don't do that when you are a lowly resident. You just don't.

After this resident left the room, the fire sparked hot from everyone's eyes and some indignant remarks were exchanged but everyone kept on working. Within 15 minutes of the drain being cleared, Katya's agitation and anxiety became markededly less, and it was clear to all of us that a large portion of her problem had clearly been from the clogged drain. The decision was soon made to start a large dose of a medication that would essentially bind the excess fluid (I was given a good explanation that made sense to me, but given that by that point I had been up going on close to 20 hours without sleep, I hope my dear blog readers will forgive me for not giving a good explanation, nor choosing to share the name that I think I remember . . . just in case I am wrong).  This was given, and within an hour Katya was able to open her eyes enough to see just a tiny crack out of each eye! That did much to calm her agitation as well, and it was becoming clear she was in a set of hands that KNEW what they were doing to help.

My respect and trust for Dr. Carina were at a good level from the start after I saw the look of anger on her face--I knew my baby was finally in the hands of someone who was going to FIGHT for her instead of the baby-faced residents who had  kept giving me soothing platitudes all stinking day long when it was clear they didn't know what they were about, as Charity would say.

But as I saw her conquering one problem after another, my trust grew even more. When she "rolled heads" and amazed even her nurses when she got permission to get a CT scan for Katya in the Operating Room which was just adjacent to PICU instead of Katya having to go through the long, long trip to get to the CT scanner way down in the basement, which would have been physically dangerous (and painful, due to all the bumps on her swollen head) and emotionally very scary for Katya, and I heard the nurses marveling to each other as they took Katya over saying, "Wonder how she did THAT?!" I knew I could trust Dr. Carina even more. So when Katya was slightly more stable, and Dr. C. sent her resident around to ask for permission to do a spinal tap to check for menigitis, I grilled the guy but GOOD, including on how many had he done, how good was he, what plans did they have to keep Katya from suffering more than she already had in the last 20 plus hours, but ultimately, I agreed. I think the poor guy didn't quite know what to make out of me, but as I told him, "I'm not trusting anyone right now until they prove themselves. This is nothing personal to YOU--but I have to ask all this stuff."

Because he stayed polite, respectful, and tried to be understanding, I did finally agree. I did not think it was necessary and knew in my heart she didn't have meningitis, but I knew THEY had to legally cover themselves, and I knew after what had been allowed to go un-cared for that Dr. Carina probably felt especially in need of turning every stone to look for any signs of problems.

So, poor Katya had her back wiped while she whimpered, and then they applied Emla cream. By this point, she was stable enough and calmed down enough that she was doing a little bit of resting and the thought of them poking her and upsetting her again really made me stressed out, but they kept assuring me that they would sedate her well, and that she would probably sleep through the whole thing. However, I wasn't leaving anything to chance, so when Dr. Carina showed up to take her place by the resident to supervise him, and told me I could leave the PICU now, I gave her a long, hard, level look across the bed and politely but firmly said, "No. I'm not leaving. My daughter needs me, and I will not leave."

Dr Carina gave ME a long, hard, level look and said, "She'll be asleep, and we need to work here."

I said, "I will step over in the corner. I will even turn my back and not look if that makes YOU happier. But I will NOT leave. My daughter may need to hear my voice, and after every thing she has been through, I will not leave her. If she needs me, I am here."

There then ensued a stare down, such as would (in retrospect) probably have been funny to have on home video. Dr. Carina, all gowned and masked, and with the authority of Johns Hopkins hospital on her side, and this tired, dishelved, sleep-deprived Mommy who had nothing but her Mommy instincts and strength from God and the prayers of His people at 4:00 AM in the morning keeping her going! Dr. Carina on one side of Katya, and Mommy on the other side of the bed with Katya. And she looked long and hard at me, and I looked long, hard, and levellly back at her. And I remember thinking, "If I leave this bedside, it will only be because Security has been called to drag me out."

And  . . . whatever Dr. Carina was looking for, she saw. Because she finally backed down and levelly said, "OK, I'll have the nurse get you a chair and you can sit in that corner." And so, I sat in the corner. And I did not look. But whenever Katya whimpered, I called out, "Katya, it's OK. Mommy is here! Mommy loves you!" and she would quiet.

I know beyond any doubt that what I did was right. I could not have lived with myself had I not been there to hear and be sure that she really DID sleep through most of it. I would have worried that maybe they hadn't told me the truth post-puncture. I would have worried about the further stress on Katya had she NOT heard her Mommy's voice every time she stirred enough to whimper. I know she heard me, and that clearly hearing me calmed her each time.

--To Be Continued