Archive for May, 2016

Brave…Yes.

Two weeks post op, following a very invasive, major reconstruction surgery of Chloe’s little, skinny, stuck knees and hips, I have to say that I think her choice of theme song is absolutely appropriate and fitting.

I know she still has a long, difficult road ahead of her, but I’m so proud of her strength and determination. And, literally, all but about 4 minutes of the last 2 weeks, she has been steadfast and fearless. For about 4 short minutes, she was tempted to give in to the fear, exhaustion, and desperation…but, as usual, she quickly pulled it together right before my eyes and forced the fear and tired-ness away. She’s amazing, if I do say so myself.

So in recognition of 2 weeks post op, here again is the song she has chosen to be her anthem this summer as she fights to stand and walk. Enjoy and be encouraged and challenged. 🙂

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True to Form

As you probably know, Chloe had a major surgery a week and a half ago. And as you also know, we were having some major second thoughts and cold feet in the days leading up to the surgery.

But there is something else to tell about the day before Chloe’s surgery that really helped me regain my focus and purpose for going ahead with surgery.

As I’ve already admitted, the day before surgery, as I was trying to pack and prepare for a week in the hospital, I was an emotional wreck. I had stopped to hide in my bathroom and cry my eyes out several times.

At one point, Zippy randomly pulled out a dvd from a photo shoot of the boys from years ago. In the background of the dvd is a beautiful instrumental song. And the dvd itself is fairly tear-jerking because of the beautiful quotes and sweet photos of my sweet little boys.

While Zippy and I were watching the dvd slideshow, unbeknownst to us, Chloe heard the beautiful music and began to make her way from her bedroom into the TV room to dance to the beautiful music.

I heard a bump in the hallway and turned to look. Chloe had stood up in the doorway of her bedroom and had WALKED, bent at the hips and bent at the knees, all the way down the hall, reaching straight out with both hands to help steady herself with the walls. She was STANDING in the doorway of the TV room and DANCING to the music.

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All of this while I was having my is-this-the-right-decision doubts and cry fests! There my girl was on her feet! Working hard, walking in her crouched down position all the way down the hall, reminding me that THIS is why we are doing this surgery! Walking is important to my girl. She wants to walk; she wants to dance. And THIS is WHY this major surgery journey was the right decision.

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Doubts? Goodbye.

Fears? Present, but understandable in the face of such a major surgery.

2nd thoughts? Nope. Knowing this surgery was the only way to keep Chloe on her feet made this decision a very clear cut one.

Chloe walking down the hall at just the perfect time? It was SO TRUE-to-FORM for her! Amazingly remarkable at just the right time.

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Thank you, Chloe — Thank you, God — for making it very clear.

Forward march!

Nearly Cancelled… Seriously

 


As Chloe’s surgery drew closer and closer, we all became more and more anxious about the process and the results. Chloe was feeling the stress. I was feeling the stress. Paul was feeling the stress. The boys were feeling the stress — but showing it and feeling it in completely unique ways.

Would the pain be too much?

Have we made the right decision?

Should we really be opting for this surgery for our girl?

Would there be complications?

A few days before surgery, Chloe came down with a cold or allergies or something. I thought maybe that was going to be our ticket off this scary train we were on. But the doctors still okayed her to have the surgery.

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Anxiety became stress. Stress became fear. Fear became panic. This was a really big deal, and it was scary.

A few days before the surgery, at the doctor’s recommendation, I talked to a local mom whose son had a very similar surgery by the same surgeon. Hearing her talk about their experiences scared me to death. She was as nice as can be, and she was glad they had done the surgery. But her son’s story was filled with some complications and difficulties that just about scared me off.

I found a couple of blogs of parents of kids who had similar surgeries. The talk was the same: the first 3 days are absolutely terrible, unbearable. The rehab time is brutal.

This mama wanted to turn around and run. And run fast and far. I was filled with doubts and fears and began to panic.

Then, 2 days before surgery, Zippy’s asthma flared up. It was the worst his asthma has been in about 10 years. As the ambulance transported him downtown, I told myself that if he was admitted then I was calling the surgery off. It would be my sign. It would be my sign that the surgery wasn’t supposed to happen.

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He was admitted for his asthma.  The ER doctors gave him tons of medicine, but his asthma was not responding to treatment. They put him on oxygen and even mentioned intubating him. And then they admitted him. Two days before surgery. In the same hospital where Chloe would have her surgery.

Was this it, then? Should I call and cancel the surgery?

Paul was shocked that I was even considering canceling. (But he hadn’t talked to that mama I had talked to! He hadn’t heard the stories!) He didn’t agree that Zippy’s being admitted should be my sign. He argued we should continue with surgery as planned because it would be a nightmare to re-think the timing of a different date. (And he was right. But it was hard to separate my fears at this point.)

So I reluctantly agreed to pack for the hospital after Zippy was discharged from the hospital….

The day before surgery, Mother’s Day, I was an emotional wreck. I cried hard several times. And I’m not a cryer. It hurt down deep thinking about what my girl was about to endure. It hurt my heart knowing that while Chloe understood the process pretty well and wanted to do it, the reality was she probably had no idea of the level of pain she was going to experience. I cried big and hard several times. I was terrified.

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I kept going into Chloe’s room and looking at her beautiful legs. Her perfectly imperfect legs. I rubbed them and photographed them and kissed them and stared at them. After tomorrow, they would be forever different. This was the last day I would ever see those legs…. I was seriously a wreck.

But the day of surgery, I was back in my brave mama mode. I was up and ready and set for what was before us…for what was before my girl. My emotions were definitely right on the surface and could’ve burst forth at any moment for most of the day, but for the most part I was set and ready. Once while waiting for the doctor to come for surgery, I caught a glimpse  of her little skinny knees and nearly lost it. But I quickly pulled it together.

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Then the doctor came, we said, “See ya later,” and “I love you,” to Chloe, and they wheeled that precious gift with those skinny little stuck knees right out of the room and down the hall to surgery.

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Yeah. It was a biggie. And we felt it.

Week One Surgery and Recovery

As I type this post, we are waiting for Chloe to be discharged from the hospital. We are 5 days post op, and Chloe has been a champ! As usual, her high pain tolerance came to bat for her this week and resulted in a much better than expected week.

We had a room-full of support the morning of surgery. Friends and family kept us fed and entertained and helped the time pass more quickly. You guys are a real blessing to us!

The surgery itself took 4 and a half hours. The nurse who was circulating with Chloe called each hour to give us the update on how things were going. Everything went well. At the end of the surgery, Dr. Mayfield came out and let us know that he was very pleased with how things went.

On Chloe’s right leg, the doctor was able to fix a 52 degree angle, and on the left, it was even greater than 52. That is a significant improvement!

The doctor wasn’t sure if he would snip the tendons in her hips or not until he examined them under anesthesia. But he said it was clear that they were in need some release so he did that bilaterally at the same time.

When we finally saw Chloe after surgery, it was remarkable how flat the bed was! Her little knees weren’t sticking up through the sheets, her legs were straight and flat! Wow! What a sight!

Chloe was very glad to finally get up to our room away from talkative, loud nurses and rest! (No offense, nurses, but y’all know how it is!)

Her epidural was unsuccessful so, instead, she was on a morphine pump IV. She had a button to push for extra doses, and the nurses could give her extra doses when needed, too.

We feel like her pain was well-controlled the whole time, and she got the hang of pushing that button, for sure!

The day after surgery, they had her sitting on the side of the bed with the help of the physical therapist. And on day 2 she was transferring from the bed to the wheelchair. She was progressing faster and doing better than anyone expected.

On the 2nd or 3rd day after surgery, her surgeon stood over her bed, shaking his head and said, “I just had no idea she was going to do so well.” This from the doctor who wasn’t totally convinced she was even a good candidate for the surgery 2 months ago.

We believe God just blessed Chloe over and over again. There are lots of people following her recovery and praying for her daily. You can follow along by liking her page here.

She is strong, she is a fighter, and she is doing so well.

She did develop some pressure sores that we are monitoring closely. She ran a low-grade fever for a couple of days. She had a rough night or two with increased pain. But overall, this week after surgery has been a breeze! Even Chloe would say so, I think.

We are so relieved and so thankful.

Yes, we still have a long road ahead of us with recovery and rehab. And Chloe still has a whole lot of work to do to get her new legs working again. But this first week that we were really dreading is nearly behind us!

Friends have set up a GoFundMe account for our family. If you’re interested, you can follow that link to help.

Chloe has had a stream of visitors that have kept her encouraged.

Really and truly, we are already so blessed by everyone’s support, concern, and love. Thank you!

Moving right along….

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