May 27th - Pectus Surgery Day 3

He did really well today, and they discharged us. I have mixed feelings about that. So does he. His pain has been under control all day. He has been active, and inactive which is exactly what you want.

 But now that we are "home" things are a tad more difficult. "Home" for now is the Ronald McDonald House here in Cincinnati. We will be here for two nights, then we move to a new "home". I think this may be some of the worse. Not worse than the 9 pain, but not as easy as the hospital. At the hospital we had a "normal". The recovery for this is not easy. You can't use your arms in any way to help you lift yourself, position yourself in bed, get out of a chair, go up an down stair or push or pull. Your arms are basically not there. While in the hospital we practiced all this, but on their bed, their chair, their stuff. Now that we moved, the bed is softer and more difficult to move in using the accepted ways. Our normal has been messed up and we have to find a new one. Today has been soooo much better than yesterday, but still has its own challenges to face.

Another issue is fear. He is afraid of the pain he felt yesterday. Who wouldn't be? That means any change in pain and a bit of anxiety sets in. Which makes the pain worse. This goes with leaving the hospital. Its like a security blanket is gone. And he is afraid.

Specifics to pray for - 

That we find a new normal. 

That his pain continues to be in check.

That his ab muscles adjust quickly. 

That every day is better.

As a side note.....I am kind of afraid I am going to OD my kid by accident. No really there are only two we can't have at the same time. And another two are as needed.

May 26th - Pectus Surgery Day 2

Sunday Night update -- Today has been hard. Really hard. He was transitioning from epidural to IV meds to oral meds. They removed the epidural about 6:00 AM. By 7:30, he was in immense pain. They would come in and give him some very strong IV medications which would help, but not last long. There was a point where he was calling his pain a nine, he had taken everything he could. That was scary. They keep telling me today is the worst day. Mainly because of the switch. The body has to get used to the pain meds from the IV and not from the epidural. 

Tonight, they are working on switching him to oral. This transition has not been as bad. He just had some Oxycodone, and before that he was rating his pain at a 6. He prefers it a 4. I can tell he is better by how he is acting. They say tomorrow will be better. I am praying it is.

His insides X-ray -

May 25th Pectus Surgery - Day 1

Saturday update.... He is doing great. Slept most of the night which means his pain is controlled. He still has his epidural which is really helping. He was up out of bed for a bit this morning but that exhausted him. He is napping now.

Saturday night update....he has been up and moving some more which is great for him, but comes with added pain. He seems to immediately go to sleep afterwards which is fine. Tomorrow morning at 6am the epidural is turned off. Prayers for pain would be appreciated.

Pectus Surgery - Day 0

Today is the day. Surgery is at noon ET.

While we were waiting to go to the OR.

We were allowed to go as far as the door to the Operating Room with him  This was nice...and yet a tad stressful.   Since it was a sterile environment back there, we had to dress up too!

They took him back right around 12:30 ET.

Surgery started at 1:22 ET.

He was in recovery by about 3:00 ET.

Dr. Garcia came and talked to us soon after he went to recovery.   The surgery went well!  They placed 3 bars.   He said that 3 is the most he ever places.   Most kids get 2.

By 3:30 we were in the recovery room with Thomas.  He was very sleepy.   He would wake up for seconds.   When he was awake he said his chest hurt which is understandable. 

We were put in a room around 4:30.

He really spent a lot of time that night of Day 0 sleeping.   

He was not talking much because it hurt. He kept saying his chest hurt, but that was to be expected. We were told his pain is more from the chest muscles being in a different position than the bars they put in because he is still has his epidural.

Feeling Lost

The middle child is having a major surgery on May 24th.   We are now less than a week away. 

It's getting real.   We have been planning this for months....really months. For the most part, I am okay.   For the most part, I look okay.   But honestly it has been hard.

1. We are traveling out of state for the surgery.   Doctors in our area do not do this procedure.  
2. It is a serious surgery.   The hospital is a teaching hospital and has been in contact with us about research studies that they would like us to participate in.   You know it is bad when they start the study information stating that this surgery and Spinal fusion are the most painful surgeries they perform at the hospital. 
3. The recovery is difficult.  There will be 12 weeks were he will not be able to lift his elbows over shoulder height, twist or bend at the torso, use his arms to get out of bed or pull in any fashion, lift over 5 lbs.  He will need help - lots of help. 
4. Did I mention it was painful?  It is hard to watch your kids in pain. 
5. Did I mention it was out of state - 6 hours away.  The logistics of traveling for this are overwhelming at times. 

There are times I say to myself.  I am not doing well. Those are the exact words that go through my head. I am stressed.  I am not doing well. 

Now, it is not all the time.   Just at times.  

So yesterday, I was driving home from the store and Defender by Francesca Battistelli came on the radio.   I have heard this song many times.   But yesterday these lyrics jumped out at me:

When I thought I lost me

You knew where I left me

You reintroduced me to your love

You picked up all my pieces

Put me back together

You are the defender of my heart

I feel lost.  Lost in the worry and the stress and the unknown.  Lost in the preparation and the logistics. Just overwhelmed and lost....

But when I am lost...HE knows where I am.  He knows exactly where I am.

Silence... is broken....

They say....

Silence is golden.

And it is!   I remember the long days, months, years with toddlers - the never-ending questions, the screaming, the whining and complaining, the fits of laughter and fits of crying, the sound-effects.   I remember how I longed for just a few minutes of peace - Silence.

Now - 13 years from the birth of the youngest baby, the noise is different.   There are deep conversations, and corny jokes, laughing, and sometimes crying, whining and complaining (still), spiritual discussions, and awkward topics, and sibling fights and reprimands.

And still there are days when all I want is some silence, quiet, and peace.  Yet, in the stillness and quiet, what I really long for is a deep, meaningful connection - Silence is golden until I realize it is not the silence I crave, but the engaging conversation.  The exchange of ideas, feelings, thoughts, fears, hopes, and dreams.

This advent season I am reminded of how God's children must have felt during that time between Malachi and Christ.   From the beginning of time, God had always spoke - through people and prophets, angels and messengers...ALWAYS.  And suddenly the sound was gone - Abruptly stopped and silent.  Hushed and noiseless.

And it stayed that way....for 400 years...

And then, Creation held its breath.   Angels waited with glorious expectation, and the silence was broken.  Shattered...

With the cry of a BABY

John 1:14 The Word became flesh.

When the storms come....

This is from June 2013:

So last weekend, we had some severe weather in our area. Severe enough that some places were without power for several days. My family and my parents spent 45 minutes huddled in a basement storage area with the dog. The boys were fine, but my eight year old daughter was a mess. She hates storms. She always has. I know how she feels. I spent much of my life terrified of  tornadoes.

After the bad stuff was past and just the rain remained I stood with my daughter in the garage watching what was left. The lightning was frequent. The wind, while not damaging, was still strong. The thunder was loud, and the rain came in sheets. My eight year old looks up at me and says, “Mom, why is God so mad at us?” My heart froze. This is how it looks to her. God is angry, and she is trying to make sense of why. Essentially, she was asking why God is willing to frighten her so.

I really think this is the view the world has of my God. He sits on his throne passing out calamity here and there to drive us crazy, to punish us, to bend us to his will and desire. And…He enjoys it! This is not the nature of my God. Does God judge? Yes. Is God Sovereign? Oh Yes, and I am so thankful for it!!!

I recall the story of Lazarus from John 11. Lazarus and his sisters, Mary and Martha were good friends of Christ. When Lazarus fell ill, the sisters quickly sent word to Jesus to let him know. They knew that he could heal the sick. They had seen him do it. But Jesus did not. He waited two more days past the arrival of the news before heading to see the sisters. By this time, Lazarus was four days dead. Upon Christ’s arrival, Jesus spoke with both sisters. Both sisters knew that if Christ would have just come in time, he could have healed their brother and Lazarus would still be there. Jesus asks to go to the tomb, and there, Jesus wept. 

He cried.

Jesus knew what he was going to do. He knew in just a few moments he would raise Lazarus from the dead. The weeping and mourning of the sisters and the gathered family and friends would soon turn to shouts of joy, and all would bring glory to God. 

But there in that moment, Jesus cried. 

Many speculate as to why he cried. Maybe because of the futility of death. Maybe because of their lack of faith. Maybe because of sin and its consequences. Maybe just because He feels with us. He knows the storm is coming on the horizon. He knows we have to go through it. He knows the lesson we will learn. And…He cries.