Special Kids

Injections

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I never dreamed i would give my daughter injections. Mostly because I never knew anyone growing up who needed injections…except for the emergency eppiPen. ( and i seriously doubt that’s how to spell it but it looks more medical to spell it like that. HA!)

I grew up giving shots to cows and the occasional calf. I can still feel myself, muscles bunched and tense, ready for that quick fast stab that would pierce their tough skin and prepared at any moment to dodge their angry hoof.

This is picture is a little different. Alot different actually. We are talking about my little sweetheart here with unblemished little girl skin and tender flesh. We are talking a steady, quick hand that doesn’t jab or jerk.

When I heard they were starting her on Lovinox (my spelling? πŸ™‚ injections, I nodded and said it’s fine and skipped right over that ‘a little longer then usual’ probing look from her Dr. It didn’t soak in that I would be the one administering it to my sweet daughter who can also be a moving target.

When I did realize my part in this twice a day prick, I just pushed it to the back of my mind in the ‘deal with you later’ category. Then the Dr. informed me I would need to learn to do this before discharge. I gamely smiled and said I was OK with that but I also added that I didn’t like it πŸ™‚ Ha.

So there I was. And they handed me an orange and a couple of syringes and told me to have at it.

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So I did. Over and over. I even made my orange jump around like a kicking child πŸ™‚ until i was at least partially comfortable with it.

And just to assure you that this needle truly is nearly microscopically tiny πŸ™‚

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And for some reason, I actually was OK about it all. Maybe I’m just your typical imagining the worst mommy, but when I actually got down to business and DID it, it wasn’t so bad. A little like the breathing tube they had to put down her throat to sedate her last week. I was dreading it with all my heart, body, and spirit. But when it came to “Time”. i chose to stay and watch them. It wasn’t pretty or fun. But my daughter was sedated and didn’t feel it. Now I know how it’s done. And nowΒ  my imagination can quit doing crazy things to me. I’m not sure that I would ‘need’ or want to watch again because now I know.

So back to these injections….hopefully they won’t last forever. And it really wasn’t as bad as I thought it would be. Maybe it was because she was sleeping and kept right on. Thank God!

God is giving me injections of grace every couple hours too… I think it’s because of the prayers of His children! Thank you!

 

 

Special Kids

New Mercies

His mercies are new Every MORNING!

That’s the lovely text my kind friend sent me this morning. Great is HIS faithfulness! After our ‘scare’ yesterday with Kierra, I just especially LOVE that verse/song!

Kierra got very sick over night on Saturday night. Her heart rate was fast, she had a fever, she was working hard to breathe through lots of mucusy fluid. Listening to her chest with a stethoscope actually HURT your ears! She acted just like she does when she’s starting with pnemonia. Only this time, she was so extremely sleepy it was unreal. Her head lulled to the side when you picked her up and she flopped like a rag doll. Anyone who know Kierra , knows that this is totally abnormal! She didn’t TOUCH her oxygen canal and usually, we need to tape it on VERY WELL to keep it there!

They did a chest xray, put her on antibiotic and drew labs to check for any infection and also did a nasal wash to check for a viral infection.

Mark and Sadie brought lunch for us and stayed to visit awhile.They brought yummy sandwiches and the best blueberries ever! πŸ™‚ Plus more including little prebagged cookies and popcorn, etc for Steve’s lunch. Totally thoughtful of them! Packing his own lunch is nonresistantΒ  on Steve’s ‘things i like to do” list πŸ™‚ although he doesn’tcomplain πŸ™‚Β  We had a good couple of hours. Sadie and I bathed Kierra and did her hair and got her all spruced up πŸ™‚

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Kierra loves when Sadie comes! But today, she was so sleepy, she barely even smiled.

Thankfully, Praise God, her tests came back clear! One of the biggest culprets was an overdose of medication! Hmm…NOT good!!! One of the blood pressure meds has to be signed off by two nurses to ensure it’s the right amount etc. and somehow, it was still overdosed 😦 I was really glad they told us instead of just hiding the fact that someone goofed up! After they fixed that, she started coming around again. Opening her eyes, even making noises!!! And even if it took a long time for eyes to lose that drugged look, it was just good to see her responding again!

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There’s a little coo and I love you!

Thankfully, the fluid started coming off her lungs with Lasix and she is breathing much easier and making happy noises again this morning. I’m guessing we will be in a few more days until they have her leveled out.

Maybe maybe Kobe will come tomorrow. I dreamed about his little arms around my neck and they wouldn’t let go. Bliss!

Thank you all for your prayers! Here’s wishing you ” the same Joy I (God) have and that your joy will be the fullest possible joy! ( John 15:11)

Special Kids

Third Floor View

We have upgraded! And now we have a big bright room on the third floor of the A. I. Dupont Children’s Hospital! Wow! Aren’t we on the high rise πŸ˜‰ We can even watch the construction on the new hospital even though it’s very dead beings it’s July 4th weekend and all. Something about the sunshine and quiet of this room after the crazy dark noisy ICU Gave meΒ  Third Floor View Syndrome bawl as I will mention later.

As soon as we were out of ICU, Kierra went into a relaxed sleep and she has literally been sleeping ever since except when we moved her for her bath. and took her on a little walk.

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She was so cuddly and clean and sweet after her bath I just wanted to cuddle her forever.

The findings of the MRV (similar to an MRI) showed some blood clots in her veins. They looked like old clots since they were beginning to calcify already which means there were other veins almost growing around the clots. They were also acting as a sort of sieve in the veins. The Dr.s gave us the option of trying to dislodge the clots. The procedure was plenty risky with no guarantee of success. Our good Dr. Strauss at The Clinic For Special Children gave us good advice and we decided to not go through the whole sedation and intubation process all over again, not to mention the vein procedure. They are giving her blood thinner to prevent more clots from forming and closely monitoring her BP meds. They want to watch her until at least Monday, then reevaluate her and decide if her levels are stableΒ  enough to send her home.

She has been so extremely sleepy today! A week with out sunshine has taken the beautiful sunkiss out of her face but she is still the sweetest girly ever πŸ™‚

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We got to take her on a walk outside to a small enclosed court yard this afternoon. It was delightfully warm and the bubbling water sparkled in the afternoon light.

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It’s so wonderful to have Steve here for the weekend! We went to the mall for a little while this morning. I had fun using a $10 reward card at Victoria’s Secret! Kierra slept the whole time we were gone.

So here was where that Third Floor Syndrome sneaked up on me. I should have been having a wonderful time…My Guy was here, We had a nice room, Kierra was out of PICU. But it seemed like the more blessed i got and the higher my blessings stacked up, the more I felt like grouching and crying.

It seemed so not fair to Kierra to leave her , lying pale and still in the hospital bed while we went out in the sunshine and rolled down the windows and opened the sunroof and cruised around town.Β  I had a good ‘bawl my eyes out’ , “I’m sick of this now’, ‘pity poor us’, ‘life is not fair’, ‘I’m tired of being brave’, ‘I miss Kobe’ cry before we came back.

Now I feel much better πŸ™‚ So to the female population out there….here’s wishing you a good cry to clear your brain if that’s what you need today! πŸ™‚

My husband reminded me of some key ingredients to happiness and joy.

#1. Let Go. Give it all to God and (#2) refuse to worry, and while you’re at it, (#3), relax! and quit holding yourself to imagined standards of what you think you should be ( you are free in Christ and nothing you DO can make you a ‘better person’ or get more credit scores in His eyes! and then,(#4) THINK HAPPY THOUGHTS.

So I know these are just scratching the surface of the Christain life, but the thing I’m holding onto today is that I AM FREE. I do not need to worry that I won’t be enough or that I need to try harder and get it together more. Although we can’t just ‘slide into heaven’ at the end of our days-

It’s because of the Great Love of My Father’s big tender strong heart that I’m going to sing and worship before Him some day! And RUN with my Sweetpea’s hand in mine!

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Special Kids

Wonderfully Created

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“I praise You because You made me in an amazing and wonderful way.

What You have done is wonderful. I know this very well.

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You saw my bones being formed as I took shape in my mother’s body. As I was put together, you saw my body as it was being formed.

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All the days planned for me were written in Your book before I was one day old”. -psalm 139

This passage brings tears to my eyes. And is such a comfort to me…knowing that our Father really IS in control here!

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Yesterday was rather traumatic with an MRV. It is similar to an MRI and KierraΒ  had to be sedated for it. Since her airways aren’t the greatest, they also put a breathing tube in for her. They asked me if I would like to leave the room while it was done. And at that moment I knew I wanted to stay. I would rather watch them do it and face my fear then to imagine it. My imagination can be vividly out of control when I let it πŸ™‚ It went well and she was asleep when they inserted it, so that made me feel better!

Linda and Aleisha came to sit with me while we waited for her to get out. It was so kind of them and made the time go much faster. They brought me a wonderful strawberry rhubarb smoothie!

Thankfully getting her off the tune wasn’t a problem. She was fairly uncomfortable for awhile, until they gave her some meds, Then she relaxed and had a fairly good night.

The MRV was a better look at her veins to check for blood clots which may be causing her high blood pressure.Β  It is controlled right now, with an IV drip of medication, but she obviously needs to be weaned off of that before she can leave ICU.

She was still sleepy last night, so Steve and I both slept over at the Ronald McDonald house on a real bed. Her nurse was great and parked outside her door, so we felt comfortable leaving for a few hours. I feel so refreshed!

So if you would be kind enough t0 breath a prayer today…Pray for healing for our daughter…and knowledge for the Doctors to know what to do and patience and wisdom for us in making decisions and juggling our lives πŸ™‚

By the way, Amy Kauffman gave me the BEST massage you can imagine last night! It is totally worth going to her ‘office’!!! I could even SEE better afterward πŸ™‚

It’s so wonderful to know that our Creator never gets tired or weary….and His knowledge is unsearchable.

Praying you could feel His presence in any trying situation in your life right now!

Anita

 

 

Special Kids

Hospital Day 7

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Kierra was so thrilled to see her Daddy and brother over the weekend! Unfortunately, all my pictures of the weekend are on Steve’s laptop, so maybe I will post more later to give you a peek into our room πŸ™‚

We had a great time with friends from Montana also! Meghan and her little family were here on Sunday before heading to Baltimore Sunday evening. I still have no idea what God had in mind πŸ™‚ We had been looking forward to their visit for months since we never got to even give a proper good bye in Montana last year. Having friends pack up friends belongings and ship their life in boxes across the country feels more like death then ‘so long’…’see you later’… So we had been looking forward to our kiddos playing together, we ladies shopping, and reconnecting and i couldn’t wait to see their new little Kia! Didn’t we deserve a nice quiet low stress time together? It just didn’t really make sense. But if life would always make sense, we would have a pretty bland, predictive, mediocre ,faithless world.

So we enjoyed the moments we had together. Kierra was drowsier and a little more uncomfortable then I hoped she would be, but she woke up enough to show her eyes and enjoy the visitors. Kobe loved playing with Jas and Rach and ‘baby’ πŸ™‚ as her called Kia.

It was a wonderful refreshing weekend and i feel like I have fresh courage for the week. Steve took off Monday also since they planned to do an MRA on Kierra which would require sedation again. I wasn’t feeling brave enough to go through that again with out him here,so he kindly took off. Of course, the plan changed then, and she only had to have a CT scan which required a few minutes of holding still versus a few hours!

My Dad and Mom stopped in for a few hours on their way home from a business trip to Lancaster. Mom stopped at our house and picked up more clothes for Kobe and cleaned out our fridge while Dad washed up the dishes πŸ™‚ Bless them! They took Kobe with them to MD for a few days until we get a better idea of how long Kierra needs to be here. He was very happy to get out of this hospital and get away from the constant No Nos πŸ™‚ Healthy one year olds and small hospital rooms do not mix well! So although I miss him so much, I’m glad he can run and play to his hearts content!

Kierra’s CT scan came back looking fairly well. They had a bunchΒ  of different techs look at it and now they plan to schedule for an MRA tomorrow to get a better look at what is going on and if the kidneys could be effecting her high blood pressure. She has not been responding to her medications as well as they thought she would at all. Typical fiesty Kierra πŸ™‚ She likes pick Drs brains alot πŸ™‚ Today, they put her on a constant IV drip to help lower the numbers and so far they look much better although still not perfect. It takes several days for many of these blood pressure meds to actually start working in her system so when they hopefully start taking hold, she can come off the IV drip. We are still in ICU and plan to be until they get her levels under better control.Thankfully, we have been blessed with great Drs and nurses! That means the world!

Thank you all for your prayers!