Monday, November 12, 2012

Home sweet home~

Let's celebrate!!
We got home late Thursday evening, Mira is doing EXCELLENT!! for this we are so grateful.
She is having some tummy trouble from the antibiotics, we pray for this to pass, she has 5 1/2 more weeks to take this.

Thank you to all who follow our journey in faith. Keep an eye out to see what amazing work God has been doing in our family!
A big announcement coming soon!

Wednesday, November 7, 2012

Struggles, strength & praise

This has been a whopping week!

We are ready to go home, to be with our family. We are grateful for the care & it is necessary but we came for a 1 night stay! Officially tomorrow makes 1 week & 2 surgeries! Because of the many things Mira has been through in her life, she does not like me to be out of her sight. So once a day I leave the room for 20 minutes to RUN to the cafeteria to grab a bite to bring back to the room & each time she has called the nurse to ask if her mommy is coming back. You might imagine that is a horrible feeling, knowing she questions my return. After a week, this tends to take its toll on me.
I have met many people this week who've inspired me in different ways. Funny how the Lord places those in front of you that challenge you, make you step out of your shell & make you defend your beliefs. But the greatest experience this week aside from healing my sweet girl, was feeling the presence of God.
My strength comes from the Lord.

Mira has done FANTASTIC in the last 24 hours! The doctor was in, he looked at her incision~ see below. He pulled the drain and we decided to place her on a newly approved medicine for kids. The great news is it can be given orally!! So, we ordered the meds, they will be in tomorrow and someone from the orthotics company is coming to cast Mira for a custom knee brace.
If all goes as planned we will be home tomorrow evening!
Thank you Lord for your continued protection!

Tuesday, November 6, 2012

Faithfulness~ Psalm 91:4

He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

Mira's surgery was at 9:30 this morning, praise God it went well. The infection has improved, Dr. Standard scraped away all the dead tissue, scrubbed & cleaned it then he was able to close her leg back up. She has a small manual hemovac in the incision for a day or two. Additionally he addressed the sore spot on the inside of her knee. He removed the "plate" that was causing the pain, stating it's not worth the risk of more infection.
We haven't made an official decision on the PICC line at this point, regardless we will be in the hospital for another day or two.
We are so grateful (BUT shouldn't be surprised!) that the Lord has protected Mira once again. He makes a promise of faithful protection in Psalm 91. I pray that I never forget this display of His promise, and I also pray for those who don't know Him.
Thankful to be under His wings,

Monday, November 5, 2012

A bedside procedure

Last night Mira's hemavac stopped working. This left things up in the air for today, the hema-vac is placed under anesthesia because it is quite painful for little ones. Finally the PA, Allyson came in and decided we needed to get a new sponge inserted. They gave Mira IV pain meds to "knock the edge off".
It was quick & painful BUT praise God she did SUPER! Her bravery never ceases to amaze me, although my heart aches for all she has endured in her short life.
If you are squeamish~ stop here.

As I mentioned last night she has a screw backing out of her left leg, this will be xrayed shortly to see exactly what happening in there so they have a firm plan tomorrow when returning to the OR.

More later....

Sunday, November 4, 2012

What's new???

Since surgery on Friday things have been changing constantly. Mira remained stable on Friday night & all day Saturday. Then Saturday evening she began to complain of a stomach ache. This is being caused by the antibiotics which is scary since she will be on them for so long. She also developed a bout of itching from the pain meds, for this Benadryl worked like a charm! The other main complaint Mira has had is the inside of her left leg is SORE!!!
After many conversations with many different people (residents/fellows etc) I was finally told today that there seems to be a screw sticking out on a small plate they were using to "tack" the inside of her leg. The purpose is to keep the inside of her lower leg from growing while the outside grows, this will allow for final straightening of her lower left leg.
The reassuring words I heard about this were "it will be handled in the OR on Tuesday"! Ok!
Today Mira had a good day, she did have a low grade fever early and was in pleasant spirits knowing she would see Daddy & her sisters today. She walked with her walker today, she is none weight bearing on that left leg until after Tuesday. And the biggest news is she made it all day without pain meds~we are praising God for these things!!
Unfortunately, there is one more unexpected thing that came up. Mira's hema-vac failed tonight. This is not the way things were supposed to happen. The hema-vac is surgically implanted which is the part of the reason she has to go back to the OR on Tuesday. There is a very good possibility they will have to take her to the OR tomorrow instead. Dr S will be in bright and early to evaluate. I will update as things change.
Many thanks to those who follow & pray for us as we walk through this journey.
Also, a great big thank you to The Wilson's for brightening Mira's day... Take a look:

Friday, November 2, 2012

"For I know the plans I have for you..."

Declares the Lord.
This is a difficult concept for me, I get very caught up in planning. It tends to be my idea of control... then He chuckles.
This is not what " I " had planned.

Last week Greg was scheduled to come home from AZ on Sunday night. Hurricane Sandy decided to bear down on Maryland, all flights canceled.
This was NOT my plan.
Mira began walking on her own last week, atleast until Sunday evening. By Monday am she refused to put weight on her right leg, then she complained of pain, then she began with a fever. Pin site infections are all but required if you have the type of surgery Mira had. We have taken every measure to prevent this but ... Not in my control.
I called Dr Standard, we discussed all the possibilities and decided Mira needed to begin oral antibiotics ASAP, chances were she had developed a pin site infection. We decided how to treat the fever that continued to creep up and agreed we would see him on Thursday since Mira was scheduled to have her cast removed. Over the next several days we alternated Tylenol & Motrin for fever and administered Keflex for infection. She began to improve slowly.
However, Mira continued to refuse to walk.
Wednesday night she spiked a fever of 103.3 on the antibiotics. Thankfully we were scheduled to see Dr S Thursday for cast removal. When I called to notify him if the temp he said to bring an overnight bag "just incase".
This is NOT what I had planned.
We arrived for our appt with Dr S and were quickly taken to remove her cast. We were also told that Mira was being admitted to the Children's Hospital for IV antibiotics. When they removed the cast we were surprised to find a pea sized wound on the side of her leg. Upon further inspection they discovered it was likely just a small pressure sore from the cast. This was not where the infection was coming from. It was from a weeping pin on Mira's right leg. The decision was made for Mira to go back to the OR this am to have debridement (scraping) done to the pressure sore and remove a wire from her fixator & possibly remove & replace the sore pin.
This was NOT my plan.
Approximately 1 1/2 hrs after going into surgery we were reunited with our sweet girl. As we began looking at the doctors work we quickly realized there was a change in plans. Mira had an electronic pump attached to her left leg. It is called a hema-vac, it's job is to provide O2 and suction to a wound. Mira has a very SERIOUS infection in her left leg... Not the right leg at all. What was thought to be a simple pressure sore is actually an infection in the plate that is used to reattach her femur after removing a wedge to straighten it. We were told she needs to stay in the hospital until Tuesday.
This is NOT my plan.
She will have to go back to the OR on Tuesday to have the hema-vac removed, more debridement & a big decision made. The decision is whether the infection has improved enough to go to home on oral antibiotics or if they need to continue IV antibiotics. If so, she will need a pic line.
This was NOT in my plans.

Sometimes we focus on what we want to do, how we want to do it and if there is the slightest variation it's throws us off. The Lord has grown me today. Not only am I NOT in control but we are to listen to ALL of His word.
"For I know the plans I have for you," declares the Lord." plans to prosper you & not to harm you, plans to give you hope and a future."~Jeremiah 29:11
The plans that are spoke of are not MY plans in this instance. They Mira's plans. Despite the trials she is going through now, she is promised not to be harmed, she is promised hope & a future. All of those things weren't the case 7 months ago. While we are all making sacrifices for the next several days, weeks or months it is nothing compared to the sacrifice that was made by God. This is what I needed to be reminded of this past week as I have whined that things aren't going MY way.
I am happy to say Mira is doing good, she is resting well. She is back to eating again but she seems quite frustrated that she can't get around like she wants to! Please keep Mira in your prayers as she has a tough recovery ahead of her. Best case scenario is being discharged on Tuesday afternoon on oral antibiotics for 4-6 weeks. The other is being discharged on Thursday with a pic line on IV antibiotics for 4-6 weeks followed by a long course of oral antibiotics. The other issue is, the only way to truly heal this infection is to remove the plate which can't be done yet since it is holding her leg together! The goal is to remove the plate as soon as it us safely possible.
I will post again soon,