Special Kids · Uncategorized

Kierra Runs

How do you pack love into 24 hours? Enough love to last a life time? It’s totally, 100% impossible. Every moment seems like hours and yet passes in a breathe.

Knowing that Kierra likely wouldn’t get better was horrible. Watching her die brought on a whole new meaning of unbearable.

The crazy thing about it was the peace and strength that held us up when our hearts and lives were totally falling apart. I know, without a shadow of a doubt, that the same strong arms that are holding Kierra are the same ones that held us together that last day and also the ones that are holding us now. Even when the coldness creeps into your heart and seeps into all the tiny cracks and you think you will never be warm again. Jesus, our Creator, is still there. Forever and always.

I really have no idea what to write about that last day because it all blurs together in my mind. I am so thankful we had it though. That we could hug our darling and kiss her and tell her she didn’t have to be afraid and that Jesus was waiting for her. My family got to come see her one last time, and friends that meant the world to her came and gave her sweet little face one last kiss.

On Tuesday when I took her to the ER, I was expecting to have a belly X-ray done to check the placement of her feeding tube. She was breathing very rapidly, but she has done that before, so I wasn’t overly concerned about it. I still can barely wrap my mind around why this time, she got so bad. so fast.

The ER doctors ordered a Vaportherm for her. She’s been on this before. It is a higher, more forceful, vaporized flow of oxygen. After being on that for a few hours, she seemed more comfortable, but was still breathing as rapidly as ever, around 80 breathes a minute. (yep, that IS super fast!) They tried several times to get an IV in, but her veins always blew for them. Finally, a nurse from PICU came down, and with an ultrasound machine, she found a vein, and inserted a line. We were SO thankful! However, it was a very temporary vein, and had the risk of blowing at any time.

In order to get her breathing stabilized, the Respiratory Therapist tried putting her on a CPAP machine. This is an oxygen type mask that goes over the mouth and nose to provide additional oxygen flow and ‘umph’. She absolutely HATED it and would under no circumstances tolerate it.

You know your child is critically ill when your room is suddenly teaming with Doctors from all over the hospital and medical personnel and your ears begin to ring and the room gets stifling hot and you grab hold of the last shreds of your mind power that remains and tell yourself firmly, “GET HOLD OF YOURSELF.”

All I had to do was take one look at the Doctor’s faces to see the fine tension lining them. When Kierra’s kidney Doctor that we have known since we began her care in Delaware, stepped into the room I saw a new sadness around his eyes. There were actually TWO kidney Doctors there. Both wonderful caring physicians who have been so supportive and helpful. My mind felt like it was about 10 leaps behind what my eyes were seeing. I was seeing reality in their faces, but my heart and mind were still way back the road,stuck at the yellow light of ‘she is just a bit sick’.

That red light was actually flashing steadily. I just wasn’t ready to admit it yet.

The Critical Care Doctors took over and Kierra was rapidly whisked up to ICU. I still honestly had no clue how bad she was. Steve had tried calling me in the middle of the hubbub and I wasn’t really making much sense to him and told him I would call him back later.

Kierra LOVED the ride up to PICU. Arms thrown wide out, little head turning happily from side to side, she was thrilled with the whoosh of air over her face. No one was messing with her face or poking needles into her arms and feet.She didn’t care that she was causing alot of rapidly flying hands and feet. She was a little Princess, snuggly with her pink blanket, having the ride of her life.

I even attempted a little joke about it. The hospital staff glanced at me sideways. They most likely thought i was one loco mommy.  🙂

When we got to the quiet of the ICU room, the Attending Critical Care Doctor took one look at her and shook his head. He said he has seen this before. When children this young are working this hard to breathe, they literally wear out. She may last for two hours. Or overnight at the most.

Six hours after her first x-ray, a repeat x-ray showed a total haziness over her lungs compared to a bit of haziness at the bottom of her lungs. The infection was spreading at a deadly rate.

We had a really tough choice to make. If we wanted to give her a chance of survival, we had to move fast. I left the room to give Steve a call. I tried hard to hold myself together. To at least make sense, but my mind was spinning so fast, and that awful ringing was echoing in my head again. Steve hadn’t been  planning to come down for the night, but those plans changed really fast! I asked him if the Doctor could please talk to him, since I wasn’t sure how accurately I could tell him what was wrong.

The Doctor, a social worker, and I made a conference call to him in a small family room. It helped to hear it all repeated, slowly, in comprehensive language. The Doctor did an amazing job of being clear and concise and not wasting words. We had two options. keep her as comfy as possible, and expect her to likely pass away by morning, or insert a more stable central line into a main artery and give her a chance to fight the infection. They made it very clear that she likely would not make it even with a central line, but by having that line, they would have much better access in giving her antibiotics, pain meds, and blood draws. In order to put the line in, she would need to be sedated. In order to safely do this procedure, she would need to be intubated. ( put on life support) They also warned us there was a very good chance she would not be able to successfully come off the life support. Her lungs may never recover sufficiently to breathe on their own again.

The social worker was so wonderfully supportive and kept telling me she would be here with us to support us no matter what happens. Once again, my brain was screaming at her “Nothing is GOING to happen! You don’t know Kierra. She is a FIGHTER!” But my face just tried to smile and said “Thankyou!” because reality was staring me in the eyes.

We decided to put the central line in, and give her about 24 hours , then remove the breathing tube. That central line sounded very attractive to us. We didn’t want her to have to suffer, and since her IV line was so precarious, we didn’t want to risk the chance of having no access to her for pain medication. I was DONE with having her poked and pricked. I was not having it ONE MORE TIME anytime soon. With a central line, we were hoping to give her the best level of comfort possible.

The Doctors set the wheels in motion. I cried a bit on Carolyn’s shoulder and told her she could take our van home. Steve was on his way down, and I had alot of ugly, hard calls to make. I wasn’t even sure I could hold it together enough to make any sense on the phone. I imagined how this news would ‘ruin’ so many peoples nights, and I felt sorry for that too. I wished I could just crawl into bed with Kierra and make this all go away.

I never did muster the courage to call my family. I think God knew I needed a call from them. My sister, Karen called to see how Kierra was doing, and I broke the hard news to her with much more calmness then I dreamed possible.

Steve finally arrived and we walked down the hallway to Kierra’s room together. She was resting so peacefully, her breathing regulated by the breathing machine. She looked so comfortable and relaxed and I immediately noticed her cute little nose that had been covered with an oxygen canula for so long. Even with all the tape and the tube in her mouth, she looked absolutely darling adorable to me.

That night, Steve and I took turns staying with her. We tried to get a bit of rest because we had no idea what was coming the next day. She kept trying very hard to wake up and they had to give her sedatives often to keep her calm and comfortable. She would squeeze our fingers, and even open her eyes and gaze around. I snuggled up as close to her as I could for awhile and she rested well. As soon as I sat up, she started thrashing around, and fighting her tube. She was still very much aware of what was going on around her!

Dads. Joe and Mona, Jason and Karen, and Warren and Dorcas all came up the next day. It was a very tough, emotional, precious day. We sang her favorite “Twinkle Twinkle Little Star”.

A repeat x-ray did not show much improvement. We had a conference with Kierra’s medical team around lunch time.  There was little chance of her recovering. We knew God could still heal her if He chose to, but we didn’t want to keep her on the breathing tube as life support. Now that we had a central line, we felt we needed to remove the tube. We decided to do it around 7PM. That would give Kobe and anyone else time to come to the hospital to say Goodbye. Steve and I took a little break after the meeting and tried to grasp the reality we were facing. We were strangely both starving hungry. So hungry we were light headed. (Isn’t that just weird!) We went down to the cafeteria with Dorcas and Warren and ate enough to keep us going.

Linda and her girls brought Kobe down in the afternoon. The Child Life Specialists came by and did some fun painting projects with the children and took a mold of Kierra’s hand prints.

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We all helped to make a big family tree with our thumbprints. Kobe was thrilled with the finger paints and I know Kierra would have loved it too if she had been awake enough to talk! Painting was always one of her favorite things to do.

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Kierra was sedated very heavily part of the time, and other times, she would move enough to let us know she could hear us. She always loved her Grandpa’s special whistle he had for her. She stirred happily when she heard it. Just like this picture of her and her night nurse… she is peeking her eyes open, wishing she could give a kiss back.

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Sadie sang her a song and talked to her. Kierra gave her a little wiggle.

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Then way too soon, we had to help Kobe tell her Good- Bye.

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Kobe did so well with all the tubes and lines, but I could tell, deep in His eyes, that he was sad and felt like something was wrong. He prayed for her often!

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Mervs took him home and tucked him gently into bed.

The next hours were the worst of our whole lives. Our family waited for us patiently in the family room. It was torture for them as well. I was hoping for some grand lifting or revelation or holy experience at the end of her life. There was nothing except the hard sounds of her labored breathing, and the soft flow of tears from our eyes. I think I heard our hearts breaking too.

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At first, she did OK with her oxygen. And snuggled into our arms.last days 043

But after awhile, she became very agitated. It got to the point where we removed the canual and just kept a ‘blow by’ there to give her little poofs to help her settle. The nurse gave her morphine at frequent intervals. We were so thankful we could be in the hospitle with a wonderful medical staff to keep her comfortable.

We told her how much we loved her and that she could go to Jesus and didn’t have to be afraid.

It felt so horribly wrong. Holding your little three year old, with a whole room full of medical, life saving equipment at our finger tips. All we could do is weep and tell her over and over how much we loved her. We were letting her go. Because no matter how much we longed to keep her, we knew she would be so much happier.

My thoughts went all over creation in those three hours.I felt like leaping up and running away. A whole world away from this painful scene. My head was screaming at me to do something, but my heart was reminding me of another scene.

A scene where pain and love met thousands of years ago. Where God turned His back on His Son. And let Him die. So that New Life could be born. Jesus loved us so much that He died for us, with all our human sinfulness. And God let Him.

That just blows my mind!

It’s  the only reason we can be in heaven with Him and our Kierra someday. Surely I could trust the heart of the One who watched His very own Son suffer to death. It didn’t make any sense. It felt SO WRONG. But at the same time, it was the only love we had left to give our daughter.

The love of freedom. For ever FREEDOM.

So we held her through the last hours of her life.

When the nurse came in to reconnect her silenced monitors, we asked her when we would know that she was gone. Her breathes were coming farther and farther apart. Just when we thought she was gone, she would breathe again. We could hear the fluid, rising in her lungs. The suspense was brutal. The nurse kindly told us that when her heart stopped beating, she was gone. (amazing how the simplest facts elude you at times like this).

I had given Kierra to Steve to hold sometime in the middle of the three hours. I could tell that she immediately relaxed when she was nestled in his arms. It was where she needed to be. Where she wanted to be. her daddy was her Hero!

Now as her breathing became farther and farther apart, I laid my hand over her little heart. I was amazed at that strong little pitter pat that played against my fingertips. It was beautiful. Just as a mother never forgets that patter of kicks in the womb, so I will never forget that delicate pitter pat against my fingertips. It literally felt like music.

Then suddenly, with no warning. It was gone. And I whispered brokenly. “Run! Run to Jesus!”

And He took her up in His arms…

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I know she is safe. Forever. Even if we miss that sweet cuddly little girl.

My family and Merv and Linda came in after she had flown to heaven and hugged us and held her and wept with us. They even managed to sing a sweet song before they left for their own families, who needed them.

We were so totally weary, we could barely put one foot in front of the other. We left the daughter we knew all tucked into a clean bed, her hands sweetly folded one last time. The hospital hallway seemed endless and each step away from her weighed a ton, but we made it. Down the elevator. Out to the car. And crashed into a hotel bed a few miles down the road. We were too exhausted to even think of going home until we had slept a bit. We did sleep, although the reality hit us UGH! in the face again in the morning.

So many plans waited our attention. So many comforting arms and caring hearts. So many people that were the hands and feet of Jesus to us. So many acts of kindness were showered on our bewildered hearts. We can’t thank you enough.

The hurting isn’t gone yet, but I think the healing has begun.

It will take until Eternity to be completely healed, though! Because we were created for so much more then all of this life.

 

Special Kids

Kierra’s Last Weekend

It’s so hard to believe that a week has already passed since Kierra left us. It seems like yesterday, and like a year all in one hazy jumble. If I repeat myself through my blogs, I apologize in advance.

Writing is usually a therapy for me but how can sitting at a computer, tapping at a keyboard make a body and spirit weary? It’s amazing to me how tired grieving makes a person. It is hard work. Sometimes I just want to say “Yuck!” and sometimes I want to welcome the pain, because it means I can still feel.

I want to go back a bit to the last days of Kierra’s life and give you a tiny glimpse. On Saturday, we decided to leave the kids with Mark and Sadie while Steve and I went on a little date. They had given us a babysitting coupon for one of the 12 days of Christmas. (I wish I had taken a picture of every one of those 12 baskets, bags, and boxes of gifts to share with everyone. I will forever remember the kindness and love poured out to us in the middle of the cold winter. Especially because deep in my heart, I didn’t really feel like Kierra was really doing OK at the time.)

Back to Saturday. There was a beautiful snowfall over night and the roads were rather treacherous as we crept our way toward Mark’s house.  The children were all excited about being out and about, and so were their Mommy and Daddy! We dropped them off, with instructions about when Kierra needed meds. It was so good to know they would be very well taken cared of and loved up while we were out!

We went to a Farmer’s Market and drank coffee and bought chick peas and veggys and fruit. Ate at Olive garden, browsed Barnes and Noble (and drank more coffee 🙂 and dreamed and planned and sat in silence.

This is how I found Kierra when we returned to sadie’s house.

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Sweetly resting in a lovely hammock. She looked so comfy, I didn’t want to move her! But we bundled her up, scooped up her brother, and headed home. I chatted with the children on the way home, asking them if they enjoyed their day. Kobe was enthralled with a fire truck he had played with and Kierra wiggled her head and gazed her pretty blue eyes up in that “I LOVED it!” expression.

A few hours later, after we had gotten home, I was working in the kitchen when I felt like I needed to check on Kierra. You know when you have this 6th sense that starts alarming and you know something is either wrong or about to be wrong? Well, that’s how I felt when I turned from the kitchen counter to glance at her sitting in her tumble form chair on the floor.

I felt silly, checking on her when she was sitting so quietly right behind me. She was just so so so quiet, though. Her cheeks were flushed. When we had gotten home, a few hours ago, I thought she looked pale. Now she was red. And her arms were tightly folded up on her chest, her eyes in a rather starey downward position. All signs that she wasn’t feeling very well. I hurried over to her and felt her head. it wasn’t just warm. It was HOT.

The thermometer read 101. This is very high for Kierra. She normally runs low, so even a fever of 99 means something is wrong. I took all her clothes off, and wiped her face gently with a warm washcloth. I was afar id I would cool her down too fast if I wasn’t careful.  I wrapped her in a sheet and gave her a nice big dose of tylenol. In a few hours, she seemed to be feeling better. I watched her closely until her nurse came at 10PM but she seemed to be feeling even better, and her fever mysteriously disappeared overnight. I heard her ‘talking’ with her nurse that night, telling her all about the fun day at Sadie’s house. She would go on and on in her sing song cooey voice.

We were hoping to all go to church for the first time in weeks the next day, but when I saw Kierra, I knew it wasn’t going to happen. Her fever had returned and she was very uncomfortable. I kept her on Tylenol all day long, and we had a cozy relaxing day in our house.

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Oh wow! how I wish to go back to this ! 🙂

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She had an OK night, but the next day, her fever still hadn’t broken. In fact, it got higher then ever. I called to The Clinic For Special Children and they worked us into their schedule so kindly. This is one of the last pics I have of her and I. We got to wear our matching scarves one time. It was so very very special.Crystal had given them to us when we were in the hospital a few weeks ago. They are so soft and fluffy.

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They checked her out very well at the Clinic, running several test, but finding nothing alarming that should be causing a fever. Her lungs didn’t sound too bad. They started her on an antibiotic to cover the bases of possible infection. We went home again,feeling relieved, but still concerned.

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I’ll never forget Monday night. Amos and Roseanna (a couple from church) stopped by with some soup and cookies for us. I was holding Kierra in the big recliner most of the evening. She was still feverish and kept gagging/coughing. When Roseanna went out the door, she told Kierra Bye.

Kierra lifted her arm up in little wave. Believe me, kierra can be very stingy with her waves ! 🙂 But this night, fever and all, she was waving. Roseanna turned around at the door, came back in, and exclaimed over her waving and told her Bye again. Kierra was very pleased 🙂 She wiggled and squirmed and waved her arms some more.

A few hours later, I noticed her breathing had become very rapid. I was exhausted from the day, so Steve took a turn holding her in her room on the rocking chair. I hooked her up to her pulse oximeter. This measures the her oxygen level and heart rate. She was barely staying at 90% oxygen. I kept turning her machine’s flow up, but it didn’t really seem to help.

I sat on the floor, weak and beat. She needed help. But what could the hospital do for her that we couldn’t? They could give her a higher oxygen flow, but would all the stress of bright lights and commotion and probably IVs and blood work outweigh keeping her comfy at home? She WAS on an antibiotic. She had oxygen. She had tylenol and a comfy bed. We decided to stay home with her.

The night nurse came and I explained to her that she was requiring more O2 and had a fever. Again, nothing was too alarming. She had been this way before, but my heart just didn’t feel right  and I forced myself to go to bed, close my eyes and sleep. I needed energy for the next day.

Around 8:00 the next morning, Kierra started gagging, and vomiting a bit. She did it twice, and since she is not suppose to be able to vomit, due to a stomach surgery she had over a year ago, I was quite sure that something was wrong. There was always the possibility that her feeding tube was in the wrong spot. Her belly had gotten HUGE overnight. It felt to me like it was full of air. It looked so wrong. As soon as the Clinic opened, I gave them a call. They advised me to take her to Dupont, in Delaware for abdominal x-rays to check the position of the tube.

I hung up the phone, and sat there, holding my little girl, and I cried.

There is nothing wrong with tears. I actually admire people who cry easily. (i don’t mean to be cheesy 🙂 But honestly, I don’t usually cry over going to the hospital. It’s just ‘the next thing to do’ usually. Oh sure, I get shaky in my hands and my heart starts racing. It always happens. No matter how often we go. Partly because I don’t know what the Doctors will find. Partly because I’m afraid we’ll have to stay. Partly because I’m afraid they’ll send us home and not help Kierra. Partly because I’m afraid she’ll never come home with us. It’s just like this little ritual of thoughts that subconsciously runs in my brain every time.

After I had my healing little cry, I dried my eyes, called Steve and yep, bawled a bit to him too. I was SO WORRIED. Then I called Linda to let her know Kobe was coming and what was going on. She offered that one of her girls could ride with me to help take care of Kierra on the hour drive. I sat on the couch and looked at my messy house. At my slpeeing Kierra in my arms with a bed head and no clothing, and at the piles of laundry to do.

Then I did something else I almost never do. I called the next door neighbor lady and asked if she could come help me get ready to go. I felt that overwhelmed. usually I like to do things myself. I just love dressing my children, putting on their coats, and going somewhere. When I have enough energy 🙂

She was over in no time with her two little children and lots of cheerful energy. She dressed Kierra while I piled our laundry together, threw some supplies in bags, turned down the heat, and grabbed Kierra’s med list that I had just updated the night before. In no time at all, we were in the van, headed to Deleware.

I’ll have to finish this in another post. Otherwise, you may be reading a LONG time. Not to mention that I need a little break 🙂

So see you round, my friends…

Special Kids

Cozy

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We are cozy by the fire today. Kierra is unfortunately a bit too cozy. She sprung a fever last evening and has had one all day today. She doesn’t seem too sick other to be very sleepy and not very talkative.

On Wednesday she had an appointment with Dr. S. at The Clinic. He was very encouraging. Instead of stressing out about getting all her calories in every day with her formula, we are backing off a bit, but still keeping her hydrated. The pay off has been totally worth it. Instead of crying most of her awake time with discomfort, or gagging and wretching, she is much more comfy. It’s a fine balance to choose between calorie intake and comfort. She has lost a bit of weight and does not have as many wet diapers, but so far I think she’s OK.

This fever seems strange, but hopefully it’s nothing serious. Thankfully, we got her off a few of her medications last week too, so her schedule isn’t quite as crazy full of meds.

Yesterday, we redeemed a free babysitting coupon from Mark and Sadie. The kids loved getting out of the house and Steve and I had a wonderful time eating at Macaroni Grill (we even had a gift card:), visiting Lancaster’s Market, reading and sipping coffee at Barnes And Noble, and dreaming and talking and enjoying the silence of the winter wonderland outside.

Hope you all have a very happy week!

Special Kids

At Least We Are Home!

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(artwork by: Kierra with some help from Mommy:)

Life does not have to be perfect to be WONDERFUL!

Right now our days go from perfect to wonderful to stressful. It’s a bit like the weather right now. From clear moon warming the cold sky to mist hanging heavy like the Garden of Eden. From sunshine and birdsong to grey ceaseless rainfall.

We came home on Sunday with a happy little girl, a tired Mommy and Daddy, and an energetic little brother. It is wonderful to be home. In fact, it was so wonderful on Sunday that after we unloaded the van, we piled everything in rooms and let it sit quietly and roominate  🙂  We indulged in hot coffee and two children and the comforts of homey blankets and couch.

On Monday, Christene came over for a few hours to help out and watch Kobe while Kierra had Occupational Therapy . The nursing agency came to get all her paperwork caught up to speed, and I made a quick trip to the pharmacy.

On Tuesday, we did laundry and cleaned up and organized and did Vision Therapy.

It’s amazing how God plants thoughts in our heart and later, beautiful flowers tendril out from those seeds of truth.

On Tuesday morning, I had an article that was due and had no idea what to write about. It was one of those ‘well is dry’ moments and I didn’t really have enough energy or will power to even come up with a subject.

Something from the hospital kept nudging the corners of my mind. It had to do with watching ones you love, suffer in pain. Didn’t our God let His Son suffer to death for US when he could have stopped it with one word?  It was for a plan beyond our wildest dreams or imaginations. The same Jesus whose heart burst wide open for us is not going to let His children’s suffering on earth mean nothing. When it doesn’t make sense, and it seems so horribly cruel and unfair, He is hurting with us. He will make everything beautiful…in His time.

That was the essence of the article I wrote on Tuesday morning. i think I needed to get it out in words so I could handle the evening better.

About twelve hours later, Kierra started wretching and gagging. She has nothing in her stomach anymore since her new Jtube, so she didn’t get much up. 15 minutes later, her color was horrible. We honestly weren’t sure if she would make it. Her stats were good, but she was gasping for breathe.   I grabbed her oxygen and slipped it on just to try to help her breath better since it seemed she couldn’t get enough air into her lungs. She jerked and screamed in pain at intervals and acted like I had never seen her act in my life.

I threw open the door to the night to give her fresh air. The moist darkness slammed me in the face and I had a crazy sensation of danger curling through the fog that lay like a smothering, eerie blanket around the house. I wanted to slam that door shut again, but common sense quickly took over and Steve stood, strong and tall with Kierra in his arms, facing the moist curling tendrils of the night.

We tried everything we could think of, even giving her a relaxant and still she struggled to breathe. Steve sat on the couch and held her while I played Jesus Loves Me over and over on the harp.Slowly she calmed down and began taking easier breaths. Her rigid jerks relaxed, muscle by muscle until she was still, and fell asleep.

I could have kissed that harp.

And my strong husband . And my sweetly sleeping daughter. And my brave Kobe who nicely went about his quiet business and acted like this happened every night.

It took Kierra hours for her color to return. We suspect she refluxed and couldn’t breath past either her reflux or a pocket of air lodged in her airways.

Since then, she has been refluxing HORRIBLY. The nurse and I put our heads together and discovered she has not been getting her reflux medication put into her belly like she should have. Instead, it’s been going into her intestinal tube, totally bypassing her belly. No wonder her belly is such a mess.

So we don’t go far from her side right now. She is so miserable, wretching and bringing up stomach acid, since there is nothing in her stomach. Yesterday, Christine ran to the pharmacy to fill a new prescription that helps with wrenching and abdominal cramps. I think it helped some, but it feels like she has lost alot of ground on her stomach refuxing issues. She is passing old blood again and even brought up a tiny bit of new blood.

Hopefully, we can get it under control here at home! She is such a brave little trupper, gagging one minute, and sweetly smiling at us the next. I think I could take some lessons from her accepting sweet spirit!

Once again…that motto i saw in the drug store

Life does not have to be perfect to be WONDERFUL!

Enjoy the wonder in today.

 

 

 

 

Special Kids

Going Home? Just maybe!

Today the Doctor stopped by and thought Kierra was doing so well that she could (maybe) be discharged tonight if everything goes well. God answered our prayers and she is doing very well on the gradual increase in her formula. It is so exciting to see her numbers rise on her feeding pump and go down on her IV fluids!!

Her tube sight developed some pretty major redness today, so we are hoping that is not infected!

The Doctors are being super nice about letting us go home and finish weaning her back to full strength formula at home. As long as she is getting the proper volume and tolerating it OK, the full strength shouldn’t be too much of a problem.

My brother, Joe and his wife came down for the day today. They stayed with Kierra for a few hours while Steve and I got out together. Kobe was with us too, so it was a wonderful day! I hadn’t seen him in almost a week. It was wonderful to hear him talk and laugh again. He almost cried when he realized he couldn’t come up on the floor to see Kierra. Children under 10 are not permitted to visit the rooms right now through the flu season. I just can’t WAIT until him and Kierra can see eachother again! He almost wouldn’t even hug me at first, because he wanted to see her so badly.

Dear child.

We are SO EXCITED about how well she is doing and thank you all for your prayers and encouragement!

Hoping to be heading home in a few hours!!!….(maybe 🙂 )

 

 

 

Special Kids

Slow Progress Is Still Progress

I’ve tried writing this about 5 times and nothing comes out right, so I’ll quit trying to sound correct or proper or what I think people want to hear and we’ll see how it flows 🙂

The good news is that Kierra is tolerating 19 ml of very watered down formula an hour. Our goal is 47ml. She is ‘just on the verge’ of not being OK with it, but we keep creeping along.

She was in awful pain last night and I dreaded the night with all my heart. Partly because the night before had been really tough and because I was exhausted and I didn’t feel like dealing with this any more and I didn’t want to NOT deal with this, because the unknown and the oppiste of dealing with it looked too scary.

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 I probably need to stop and process my feelings and emotions, but right now I don’t feel like doing that right now either. (i need to go calm Kierra, be back soon…or maybe not 🙂

So here’s the deal. If Kierra cannot tolerate enough of any kind of formula, we are headed for some hard desicions. The only other option for her sustance is a more permanent line that would sustain her with IV fluids. That would be a huge step because when we do that, we are entering another whole level of health care. And we are not at all sure we want to put her through all that.

 It’s more then just what we want for her in life. It’s what BEST for her.

That’s a hard choice for any parent to make and like our Doctor has told us in the past, “there is no right or wrong choice here.”

We need to do what we feel is the best for her and us. We need to get out of our own heads and into hers. And pray.

Yeah. That prayer thing is pretty hard to do sometimes. I think maybe I would call it more Breathing. Like being linked to God with our breathes…so close that He knows what we’re thinking and feeling.

I must be rather thick sckulled because I didn’t even really consider that this Jtube thingy wouldn’t work for Kierra until yesterday.

  Then I suddenly realized how much is riding on this whole ‘tolerating her formula’ thing.

 I honestly just kinda pushed it to the back of my mind. Because I don’t really want to spend time worrying and obsessing over it when it hasn’t even come to that point yet. It’s just that I don’t want to be caught off guard either.

 Right now, we are headed in the right direction…and we will pray hard that God would keep moving her digestive system along and we could get out of here with a happy little girl in a few days. Will you join us?

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Yesterday a Kate and Katrina came to see us and we drank tea and talked and Katrina played harp music and Kate read me a wonderful portion from One Thousand Gifts. It was about the Israelites and how God sent them  manna for so many years and the meaning of manna is literally what is this? Sometimes the things in life are literally a big question of What Is This? that You are doing God? Right now, we choose to trust the heart of God. Because we know of no other larger, more compassonite, more perfectly wonderfully, right heart to trust.

Kate and Katrina didn’t even freak out when Kierra kicked her IV apart and there was blood dripping all over and the nurses came scurrying in and we held her firmly as they salvaged the IV ( PTL! a miracle in itself!) and retaped and swaddled her foot again. 🙂

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Then today, Sadie and Brenda came with cheer and love and we bathed Kierra and went out to lunch in Brenda’s cute diesel Jetta 🙂 Thanks for taking pictures, Sadie! They are so special to me!

My parents were here so they stayed with Kierra while I took a nap at RM House. They drove over 4 hours just to see us and give me a break. Thanks Mom and Dad!!! It meant so much!!!!

Now tomorrow night, I’m hoping to see my Better Half 🙂 and my little two year old that I miss frightfully.Phone converstaion just doesn’t always ‘cut it’ anymore.

Tranquil rest to you all…snuggle deep in God’s Love and Peace!

 

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Tube Changed!

Yeah! Praise the Lord! They had an open slot in the IR today and got Kierra’s new J/Gtube in. She did very well and didn’t need to be totally ‘put under’ but only sedated. Her IV was leaking, so they got a new one started as well while she was a little more relaxed. Now we are slowly increasing her feeds every 3 hours until we reach our goal of 47 ml per hour. We are at 10 ml right now:) She is sleeping again finally. She was awake all night the last three nights. I think she just wants to go home to her own bed. Thankfully she took a nap today, now tonight she is sleeping again.

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The wonderful thing about this cold snap that has everyone shivering is that Steve got to have off work yesterday and today! That made me very happy! I even got to take a long nap this afternoon…bliss!! Personally, the cold cold outdoors felt very invigorating and brain clearing to me on my short walk to the car 🙂 Nope, I did not have to stay out for any long amount of time.

Steve headed home again tonight. Hopefully we can be discharged in a day or two and celebrate being together again. I miss Kobe! 🙂 It’s so much fun to talk to him on the phone now that he’s old enough to respond.

Guess what else? I got my cracked lenses fixed in my glasses yesterday! They have cracked twice now, and I haven’t even worn them much. Kierra likes to reach up and box them with her long arms, but I didn’t think that would be hard enough to crack them. Maybe they are weaker then I thought. This time I got a more shatter resistant lens.

Just a little secret… Lens Crafters was going to charge me $300! for replacement lenses. Vision Works only charged me $90…and did it in a few hours! I was highly impressed! I think they did a super job of getting my eyes focused in them too, since the last lenses made my eyes go weirdo. I can actually wear them without feeling tipsy! I guess it just takes coming to the hospital, having a great husband to watch Kierra,and a Vision Center close by  to give me the nudge to get them fixed. LOL! Oh! And I think this vision center did a MUCH better job then Sears where I got my glasses 🙂 So …good things come to those who wait 🙂

Yesterday, a friend texed me the amazing thought that God watched his Son suffer to death and didn’t do anything about it…because He loved us SO MUCH! So don’t think for one moment that God does not hurt with us when our children suffer also.

Last night, a Pastor stopped by on His rounds, and in our conversation, he mentioned the exact same thing! That God really DOES care that we live in a hurting imperfect world. He sent Jesus to this messed up place for US! Isn’t that just the most amazing Love and Grace!

It was a wonderful confirmation that God will walk with us through whatever we face in life.

Thank you all for your prayers! This has been a wonderful day! 🙂

Stay warm.

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Quiet Day At Dupont

We had a relaxing quiet day today. Kierra calmed down majorly after her feeds were discontinued and her belly had time to empty and heal. She went from thrashing and crying to laying calmly and resting quietly.

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The GI Dr. and kidney Dr. came through on their rounds today and decided it would be best to change her Gtube to a G/Jtube. That will make so her feed can bypass her stomach ,hopefully causing her less pain,discomfort and vomiting. Last night, they tried to start her feeds at a super low rate of 10 ml an hour only to have her vomit after 2 hours, so we know that she cannot tolerate formula in her belly right now. The only other option for hydration is through IV. This tends to make her retain more fluid so the kidney Dr wants to discontinue her IV asap.

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We waited all day for a time slot for her procedure to open. Nothing did…they were booked full. Tomorrow is full as well. We are hoping and praying for a cancellation so she can get off her IV fluids and start with her formula feeding again. She will have to be sedated for the Jtube placement since it requires threading the tube down into the intestines. She’s pretty good at rockin and rollin when it comes to someone messing with her belly, so I’m guessing it will take a fairly large amount of sedation.

Today we went for a little walk down to the family room, and hung out in our room. There is alot of RSV etc in the hospital right now, so I wasn’t too sure about taking her out, so I covered her Kid Cart with a blanket. No children under 10 yr. are permitted on the floors right now through the flu season, so it was a nice quiet walk 🙂

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She has been awake for most of 48 hours now. This afternoon she opened her eyes and laughed and talked and gave kisses 🙂

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I think her gazes toward heaven just melt the heart of her Creator and make the angels sing.

She finally fell asleep tonight and is totally cloncked out. I am so thankful!! I love to see her at rest when she so desperately needs it!

Prayer Requests:

1. That she could have her tube changed tomorrow sooner rather then later 🙂

2. That she would not catch a nasty bug here in the hospital.

3. That all the IV fluids wouldn’t cause her to retain too much fluid.

4. That she could be calm for the tube change and it would go well.

I talked to Kobe today. It was so much fun and he sounded like he was living the good life! 🙂 I’m so thankful he has a good safe place to stay and that he is well cared for and loved while we are here!

Thank you all for your prayers!

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Admitted

After Kierra vomited at 4:30 this morning…again and cried uncontrollably and was totally miserable, I emailed our Good Doctor. He so kindly called me on a Saturday and we decided with all Kierras ‘glitches ‘–vomiting old blood, refluxing badly, lower heart rate when sleeping, cold sweets, and generally becoming more miserable, our best choice was to take her to Deleware where a wonderful group of Drs could work together to make her more comfortable.
We packed our bags and cleaned up the house and fueled up with gas and Coke and headed out, dropping Kobe off at his beloved. Merv’s House 🙂
6 Hours of sitting in the ER and now we are settled in our room. Kierra has cried most of the time if she isn’t sleeping. She is finally relaxing after plenty of Valium and giving her belly a break from her feeding. As long as she is on IV, she won’t dehydrate. Her afternoon was very traumatic with abdominal and chest xrays, labs, IV started, urine sample collected,and Kayexalate medication that gave her awful gas and a huge blowout but also brought her potassium levels down nicely.
They want to do an ultrasound on her abdomen to check for any other major blockages or obstruction in her bowels /intestines. Hopefully on Monday we can see the GI. DR.And perhaps get a feeding tube put in that bypasses her sensitive stomach.
Prayers for her comfort! Also that her electrolytes would continue heading in the right direction!
Now I will quickly post this before I get interrupted again! 🙂

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Two Little Wildflowers

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Kierra met another little friend today that is diagnosed with the same disorder that she has. Kayla is 2 yr. old, almost three, but she easily held her own beside Kierra 🙂 Her parents traveled from Indiana to do some very informative testing at LGH here in PA. She had just returned from an MRI when we got to the hospital to see her, but she still smiled and wiggled and blinked her eyes coquettishly…just like Kierra 🙂 They even locked their arms together for awhile and lay there happily beside each other, while we parents visited and loved watching them.

There is a marked difference between the two little girlies though.  Of the 27 known cases of Yoder Dystonia, this little Miss Kayla  has no kidney disease at this point. Not even a trace. Last year, The Clinic Dr.s and scientists met with more Dr.s and scientists that were discovering more children with Yoder Dystonia, but were calling it Hershberger Syndrome instead. They pooled their knowledge together, and discovered that little Miss Kayla had a different mutation to one of her genes then any of the other children did.

To make it all a little easier to understand, good Dr. S. explained that while Kierra and every other YD child has a mutation in  genes that affect the kidneys and the brain, Kayla only has a mutation in the gene that affects the brain. These genes are right beside each other in our gene pool, so he described it like shuffling a deck of cards. Sometimes the cards stick together. That’s what happened to all the children except Kayla. The kidney gene and the brain gene both became mutated or ‘stuck together’ and were affected. Kayla’s gene  broke off before it reached the ‘kidney mutation point’, so her kidneys look pristine.

Isn’t that just amazing!?!

Now they need to find a child with only the kidneys affected and not the brain! 🙂

So I’m not sure what all this means in finding help for these kids, but it is WAY ahead of where they were a few years ago. Knowledge is power. At least I hope so in this case 🙂

These children’s Cerebellum in their brain deteriorates at a very high rate of speed. Kierra’s may perhaps be at the deterioration stage of an 80 yr. old. An MRI would likely show more, but this is an estimation from other research. Maybe that is why she has trouble sleeping 🙂

They are hoping to have a reunion for all the Yoder Dystonia children this summer sometime. I am very excited about it! They also hope to have more information to share with all the families. Maybe I will discover then if my memory served me well or if I got it wrong in my brain’s computer as i listened to the Doctor’s knowledgeable explanations 🙂

The more medical term for YD is called NCS. This stands for

Nephr (kidney)

Cerebelo (brain)

Syndrome.

That makes more sense to me as well 🙂

So maybe technically we would say that Kayla has Cerebelo Syndrome and Kierra has Nephr Cerebelo Syndrome 🙂 Either way, they were very much alike and very much different. Two lovely little sweetie pies.

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On the way home we picked up a bunch of medication refills for Kierra including her upgraded brand of pepcid. She is still having problems with a GI bleed and is still spitting up blood sometimes. We are still waiting on some test results. Poor girl. Her stomach muscles must be getting worse, since she is vomiting 3-4  times a day. Thankfully, it’s not more then a few mouthfuls, but it’s still traumatic and uncomfortable and yuck for her.

We are hoping to change to a different style feeding tube that will bypass her stomach and take her feed straight down to her intestines so she doesn’t have to vomit as much. She is loving her bed and her new Bird and Flower bedding very much these days!

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