9

Taking The Plunge

It was a decision that was HARD and agonizing and a long time in coming. This thing of getting a nurse in to care for Kierra at night. 

My husband strongly encouraged it when he realized how exhausted I was. I guess three years of jumping out of bed countless times at night does that to you.

But it isn’t just the jumping out of bed that gets to you. It’s the constant -ear open- mind ready to kick in high,- brain never resting- thing of listening while you sleep. It’s different then listening for Kobe.

It’s the feeling that if I do NOT wake up a whole number of unpleasant- even life threatening things could happen. Like she could get the blanket over her head and suffocate. Or get wrapped up in her tubing and strangle (though I never heard of this happening. lol! but the thought…) she can get stuck in a position she can’t get out of. Or her MicKey could come out and the hole close too fast and surgery would be in the picture. She could stop breathing or even push her oxygen off and labor away until she’s grey in the face.

And these things really have  happened.  So you can imagine how ‘restful’ nights are. And yet, i always am amazed how you still learn to sleep through your fears and trust that angels will hover round your child and wake you if your needed. 

Having said that wonderful thought, it still doesn’t take away the responsibility that goes hand in hand with us every day. Everywhere. 

So after talking to several Moms who have in home nursing, and after realizing that i can’t handle life all by myself sometimes. And after realizing that I’m being an impatient, snappish Momma Bear to my Wee Ones and Pappa Bear way too often, we decided it really was time to get some help. 

I still struggled with that thing of not being capable and energetic enough to take care of my own daughter. That thing of knowing that other wonderful Mommys do more then I and survive. That thing of meeting Mommy nurses in the hospital that work night shift so they can be with their kiddos during the day and wondering when they actually sleep!! And thinking i am just ‘not enough’.

But in the end, we decided it was for all our health and well being and quality of life 🙂 that we NEEDED a nurse.( ouch. that kinda hurts to say it .) But. YES! I got it said! 🙂

So yesterday was our first meeting with the agency. The folks were so kind and caring and made me feel like I was making the right choice. It was a long process with tons of information to get down and lots of paperwork! About 4 hours from start to finish. And I was exhausted by the time we were finished. I was signing my home to be opened to ‘strangers’ and my complex daughter to be under their care 8 hours a day. 

Our first nurse came last night. She is a homey, sweet, compassionate lady that Kierra took an immediate liking to. I was so excited about sleeping, i could barely sleep:) Then i lay there, in the dark, and realized I could drift off into peaceful la- la land, turn my brain off, shut my ears, and be waken if i was needed. 

Turns out Kierra slept well too. Except her oxygen levels kept dropping nearly every hour. She is on a moniter at night, which is a great thing, because she will suddenly drop her levels with no warning. Then we need to bump her up to 3 liters of O2 until she ‘catches up’ again. 

We had a very interesting though rather hard Dr. appointment on Tuesday. Kierra has had a low grade fever for about 4 days now, and seems to need increased amounts of O2. 

Good Dr. S. informed me of some new research being done on Yoder Dystonia , ‘fresh off the press’. One of the nation’s top scientists is studying the brain of a child affected with Y.D. He is finding some amazing things and he is barely half way done. The back part of the brain loses brain cells as these children grow and age. They do not reproduce more brain cells. This is the part that controls eye movement, spasms, and learning. This makes total sense to me since the older Kierra gets, the more eye flitting and uncontrolled movement she has! I”m sure they are accurate on the learning part too, although I know I can communicate much better with Kierra now, then I could a year ago!

They also took blood from Kierra and I and sent it to their special ‘Y. D. scientist ‘ in the lab. He has discovered how to break down certain cells in the blood and take them apart back to embryo stage. Then he can put them back together again and is hoping he can understand more about this genetic disorder. The same way with urine…he takes a protein in the urine and breaks it down in hopes of finding the leading cause for kidney failure in these children. The kidneys themselves seem to be the problem more then that the body wears the kidneys out.

So having this new exciting information is helpful, but it doesn’t fix anything yet. Next Friday, we plan to meet with him again, and make an extended care plan for Kierra.  That won’t be a fun meeting. But it is good to face the true facts of life and I think it’s better to KNOW what to expect then just to have a cloudy fear of ‘what ifs’. And although we won’t really know what the future holds, we can hopefully still get a better handle on what to expect and how to help her.

Right now, she is retaining fluid again somewhat. She could defiantly use some heartfelt prayers that it would decrease and she could also breath better. She seems to forget to take deep breaths, which drives the levels of Carbon Dioxide up in her body. That’s not a good thing. 

Thankfully, she has had happy moments through the day and is still moving all over and smiling and she even giggled yesterday!

So although she could go into kidney failure next week, she could also rebound and live for many happy years! That’s our prayer and hope! Meanwhile, we are enjoying the end of summer and celebrating the amazing Gift of life!

 

 

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3

Home Sweet Home

YES!!!

Kobe and Kierra in their room with their favorite music playing night night tunes, a fresh pot of spearmint tea brewing. ..I am nearly too tired to sit here 🙂 But I have been so scattered the last few days, i just wanted all you lovely people to know we are home again! 

It almost feels like a week of our lives went missing 🙂 because a week ago I was so excited about the weekend. And now I’m excited about this weekend! And so very thankful I am at home instead of sitting in the ER!

Kierra’s labs are some better, but she still doesn’t really look OK to me. I have an appointment with Dr. S. at The Clinic on Tuesday and can’t WAIT to go! He always makes so much sense! And understands Kierra better then any other Dr., esp. since he has seen her the most and longest and worked with other YD children. He’s our ‘Kierra Whisperer’. LOL!

I want to do some research over the weekend and go loaded with questions and try to organize my mind. It feels rather scattered and unsure right now.

But it is truly marvelously wonderful to have a soft bed, clean, good smelling clothes, and all the little homey comforts!

Have a very happy, blessed, weekend my friends!

joy and peace from the Hochstetler’s to your day!

 

6

Return to Dupont

I was having so much fun cleaning my house, doing laundry, watching Kobe play pat a cake with his doll, and brooming around on his trike and Kierra snoozing peacefully in front of the air conditioner last Friday. 

My phone rang, and I answered quickly, not expecting my while day to do a 180 turn. It was Dr. Z. from Dupont, wanting me to get labs done on Kierra asap. The only place that I knew to go for immediate results was to the ER. She had been very pale the last few days, but doing well otherwise. 

My mind was buzzing when I got off the phone. I don’t like that uncomfortable over drive you need to shift into when you suddenly have to make major arrangements fast. As in, find a baby sitter for Kobe, pack a hospital bag just in case, wrap up the house…and poor Kierra had sweated her hair  into a sopping mass of tangle before I realized that the fan in her room wasn’t keeping her sufficiently cool a few hours ago. 

I called our neighbor lady who generously offered to watch Kobe till Steve got off work. Then I flew around the house, packed our bags, cleaned up Kierra, grabbed her meds,and formula and suction and oxygen and was out the door. I even took time to grab the quickest food I could find since I knew how long ER visits could drag into. Pretzels, cheese, and an icecream sandwich:) 

We got to the ER at 12 noon and 8 hours later, they were loading Kierra into the ambulance to transport her to Dupont in Deleware. Her labs weren’t just awful, but they needed to be monitored closer since she is on Lovenox and blood pressure meds.

Steve and Kobe came into Lancaster General in time to tell her Bye, and bring me a sandwich and hugs. I drove down in our van and waited for what seemed like forever until they told me she was safely in her room upstairs. 

They redid labs at Dupont and found Her potassium levels were very high. This is very dangerous since it can cause heart attacks. They gave her a yucky brown medication to help flush it out of her body. I was glad she had a Gtube and didn’t need to drink it!

Thankfully she didn’t need a blood transfusion this time. Originally we thought she likely would, but she seemed to be holding her own, so we are greatful.

The weekend made everything run slower around here, including Kierra. She slept almost all day Sunday, so Steve, Kobe, and I ate at the Ronald McDonald house and I went to restock some of Kobe’s essentials for the week. We had a good day, considering our major change of plans from a nice family weekend at home, to a family weekend in the hospital! 🙂

Sunday night, Steve went back home with Kobe and I planned to be discharged on Monday with Kierra. Plans were rolling right along until the kidney Dr. came round and suggested we add a powder to her formula that will leach the potassium out of it. They also put her on weekly injections of Epoetin to help her kidneys produce more red blood cells which should help her constant anemia.

So that moved our discharge date to Wednesday. I wasn’t thrilled about staying longer, but I’d rather get it all figured out and ironed as smooth as possible before we head home and have to return again in a week! 

Kierra is being very patient about it all and taking lots of beauty sleeps. We’re hoping she does OK on this formula change! Otherwise, we need to start with a different formula which would take another day to adjust to.

Every time I’m in here, I meet more amazing people and hear more amazing stories.

Like the baby that was born after many years of her parents waiting and praying. She was perfectly beautiful but needed open heart surgery immediately after birth. At two months, they discovered she was deaf and blind and would need two more heart surgerys and two new kidneys. The parents said -that’s enough! They didn’t want to put her through all the suffering, so they let her go. And she was carried away to heaven after 5 short months.

The mom’s testimony was ” i was so privileged to be her mommy.”

Isn’t that just amazing! No “why did God give us this baby to take it away?” (although I’m guessing she did struggle with that sometime or another if she was human 🙂 

I think she felt like God had a plan bigger then life for their child. So she opened her hand . And let go.

Now I’m goina be crying all over the place here soon if I don’t wrap this up ! 🙂

Peace to all of you tonight….and the calm assurance that letting go is OK. God’s gottcha. 

6

Unbendable Lunch Hours

DO NOT. I repeat > DO NOT go to the post office over lunch hour(s). 

I have these items that have been sitting in my house for months (literally) , waiting to get shipped to friends. Yesterday, I decided today is The DAY. They WILL go. So i called my sweet neighbor lady who lives on the other side of the duplex ( doesn’t that sound more official  then ‘ on the other end of the farm house’ 🙂 and asked her if i could drop Kobe off for a few minutes while I run to the Post Office. Kierra had just fallen into a deep peaceful sleep, so i uncovered the door that runs from our house to theirs and took the monitor over for her to keep an ear on. 

I had two bags of stuff to mail, so i went to the closest post office that was an actual P.O. building. Last time, I went to one in a tiny convenience store and it took FOREEVVERR for the lady to come process everything. 

I  piled my supplies on the small shelf in the P.O. , found boxes that would fit them and asked for their free ridiculously flimsy, strong, sticky ,no body, tape. I used to do lots of shipping and packing in MT so I knew what i was getting, but the scissors she handed me was horrible and i finally used it as a straight  edge and rapidly ripped the tape against it to tear it.

It took me quite a few precious minutes to make the box work since i had to folds it all together and the post Mistress informed me that i couldn’t have it bulging anywhere because that was against the rules. I taped and tugged and shoved and pinched until i had it all in good, tight, ship shop shape. I was hurrying as fast as possible, thinking of Kierra at home and the possibility that she would wake up and gag or pull her oxygen off or something, Even if i knew someone was watching her.

I was just finishing taping the last box when the overly cheerful, totally professional words came “We are closing now for lunch, Mam.”

I was so surprised because it was only 11:30, so i said, “OK, I just have to finish taping this yet.” I thought it was a warning that they would soon be closed, but i turned around to find her pulling the metal barriers down over the counter. I GRABBED my boxes and flew over there, quaking in my shoes because I still had to address them . 

I had barely reached the counter and pulled out my wallet, when she sweetly said “Can you bring those back later so we can process them all?” eyeing my three boxes suspiciously.

I stared at her like she had lost her mind. “No, not really. I have my children with a sitter.”

“Well. We are closed now. I won’t get paid for my lunch if I do all these yet.” She said in an infuriatingly even,  pleasant voice.

I looked at my three neatly wrapped boxes and was speechless.

“They aren’t international are they? ” she continued.

“NO!:” 

“Oh good, then we won’t have to worry about custom forms to fill out. Just come back later today and we will process them all.”

I was grasping at straws. “Can I pay for them now and you can process them this afternoon?” (they were mostly flat rate boxes) 

“No, that won’t work. I won’t get paid for my lunch if I do that now.”

I HEARD that Lady!!!! But this is like a MAJOR expedition for me! Do you want me to bring my two children in here which will take me half an hour to load and drive and unload and have my daughter cry in your office the whole time and my little boy drive everyone to distraction as he explores every nook and cranny while i try to shuffle my big bag, sway Kierra’s seat, pay for my stuff, hold up the line, and make a diving grab for Kobe , streaking toward the nicely stacked pile of boxes?

I think i muttered something about my husband helping me and what hours they run and some other incoherent mumbo jumbo.

“Did you give the scissors back?” She continued. I didn’t even want to answer that question. I had laid it on the counter first thing and watched as she put it away. I wouldn’t even WANT a scissors that doesn’t work like that, thank you very much.

“Yes, I laid it on the counter with the tape” I answered. 

And picked up my boxes.  and left. They are still sitting in the van. 

I think God was trying my patience and took me serious when i asked Him to ‘give me strength for whatever comes today”. i just didn’t expect it to be at the post office! 🙂

So here’s the practical lesson learned that I will share with you…

Do NOT go to the Post Office any hour over lunch time. 

They do not get paid for lunch if they help you 🙂

 

 

4

It’s already Thursday! This week has literally melted away and the weekend is pushing in again. I LOVE weekends! 🙂 Especially ones when we can all be together.

Here’s a peek at what met us when we came home last weekend…

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it was wonderful to come home to a restocked fridge and clean house and folded laundry! I wish I had taken a photo of the mess we created when we unloaded our van just to make those of you who cleaned our house , Groan :0) It’s amazing how stuff accumulates at the hospital!

The last few days were busy trying to rearrange our tiny living quarters to accommodate more ‘Kierra equipment’ and meds.  We switched Pharmecies over the weekend also, which has cut our stress level(of getting her meds) in half so far 🙂 Our last Pharmacy had a bad habit of  being very much less then helpful when it came to quick perscriptions and sudden med changes. I was NOT AMUSED Friday night, coming home from the hospital and discovering NO ONE there would mix Kierra’s blood pressure medication for us because it was almost closing time.

I really truly try to give people the benefit of the doubt and second chances and all that forbearing hash 🙂  But that night I was MAD> my daughter NEEDED these meds first thing in the morning. I think they were on their 9th second chance with me. We didn’t go back again. Saturday morning, Steve went in search of another Pharmecy that does compounding and we have been much more satisfied! Here’s a thumbs up to Royer Pharmecy for all you locals 🙂

I cleaned up the house on Monday and did LOTS of laundry. The kiddos were so glad to be home!

I worked on making appointments and did paperwork

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Kobe sprawled out in his favorite sleeping spot

 

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She is just THRILLED to be out of the hospital!

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Last night, I heard Kobe saying “KIIEERRAA!” In his amazed singsong voice. Followed with “uh”. I looked over to see him helping her play with her toy and she must have actually gotten a button pushed because he was so proud of her 🙂

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On Tuesday, i loaded Kierra up and took her to Dupont for lab work. Kobe stayed with Linda Fisher and her girls. It seemed to take forever to get anything done that day:) On the way home, Kierra pulled her O2 off. I thought she might be OK without it for a few miles until I got off  the big highway, but she got whiter and whiter and her little chest started working too hard, so I pulled off the first available exit. Hmm. I got her O2 back on just fine, but it took about 20 minutes of back roads, down town driving, stop lights, and long waiting lines to get back on track again. I tried to remind myself that I have all day and that i can just relax and BREATHe and keep driving.  Easier said then done!

I was almost home at 5:30 PM when my phone rang. It was the nurse , telling me to hold Kierra’s injections for the next two doses since her levels were way too high. That was fine with me..holding her injections 🙂 but then she said I need to do repeat labs again tomorrow. Now that wasn’t so fine with me 🙂

So yesterday, we packed up again and this time, we only had to go to Lancaster, and Kobe went along. I missed him too much to leave him again 🙂 Her potassium was high which is dangerous, since it can shut your heart down in a moment if it goes sky high. Steve ran to the pharmecy again last night for another medication that should help those levels.

So today, we will see what her hematology Dr. has to say about those injections…Hopefully her levels are more stabilized!

I have a major love/ hate relationship with medications 🙂 They do their job, which I am VERY thankful for! but all the side effects cause more meds to counteract those and around and around and around we go 🙂 It’s a balancing act that requires lots of patience! I’m so thankful for Drs that do their best to keep her healthy! We are hoping to get rid of her Clonidone patch in a few weeks if her blood pressure levels stay solid.

And guess what? I haven’t had to cook a whole meal since we came home! Friends have been so kind in providing food for us! It’s a HUGE blessing! We would have been dining on cereal and eggs and who knows what most likely otherwise:)

Gina and her mom even froze beans for me. WOW! I am so blessed!

And I am savoring small pieces of the blueberry cream custard pie that Linda brought the other night. It’s actually a new kind of pie for me and we are loving it 🙂

To all of you who supported us in food, groceries, kind deeds, and prayers, THANKYOU! We appreciate it so much!

 

 

0

HOME!!

It’s for real! We are home! Late Friday night, i walked in the door with Kierra in my arms. So. very. thankful.
When things slow down just a bit and I have time to upload pictures, I will post the happy surprises that waited here and there around the house for us 🙂
For now, all i feel like doing is sleeping in this quiet bright sunny house and enjoying my kiddos and eating home cooked food. 🙂
An amazing verse I found this morning.
“My strength and power are made perfect (fulfilled and completed) and show themselves MOST effective in your weakness. Therefore I will all the more gladly glory in my weaknesses and infirmities that the strength and power of Christ, the Messiah, may rest upon me-may pitch a tent over and dwell upon me.” 2 Cor. 12:9 Amplified Bible
Isn’t that just a WOW verse! I still haven’t digested it all yet 🙂
anita

5

Kierra’s Third Birthday

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Her favorite dress from Grandma Pollyanna in Honduras.

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Her hair done up in a braid.

Our little baby  is growing into a ‘for real’ little girl. Kierra was full of smiles and coos today. She slept in late. Wouldn’t that make anyone full of smiles and coos! 🙂 Child Life is a service here at the hospital that provides toys and activities for children in the hospital. They brought a big poster to hang on her window, and two brightly wrapped gifts for her. Baby Einstien books and a Leap Pad. Kierra LOVES the leap Pad. She can activate the noise etc, without having to push or concentrate on hitting one specific button. Since her movements are very uncontrolled and random, it’s the perfect toy for her!

Later in the day, Sadie and Sierra came with more gifts and yummers! a Caramel Frappe for me 😉 Kierra told them stories and we all had a good time. The respiratory therapist that came by gave us a very educational run down on salt water versus pond water drowning and submersion. He was a professional scuba diver as well, so his water knowledge was amazing! Kierra got an extra long session of chest therapy during that visit. She loved it! And fell asleep when they were ready to leave.

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Sierra hung out here with us until  Christene, Joanna, and Gina came, bringing Kobe, a huge box of gifts from church friends, strawberry cake, and supplies for a grand party! We got to go out on the terrace and enjoy the twilight. What a special birthday! They sure know how to cheer a hospital stay up ! 🙂

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Kobe demolished two pieces of cake :)So our three year old Darling is the Queen of the day 🙂 Happy Birthday, Kierra! We love you!

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