Father, I find great comfort in knowing You are in control of all things. No matter what happens in my life, help me keep my eyes fixed on You. As the storms of life come and go, give me the strength to stay anchored in Your loving arms of safety.
As we prepare for Clara's up coming tracheal surgery...I specifically pray for safety. This surgery is one that we have been waiting for ever since December 13, 2013, the day she had her tracheostomy. So two and a half years later am I ready..no. I am really anxious, because the minute they take her from me, I again lose control. Control over the 5 hours she is being operated on and the next several days she is in the PICU and hospital.Also I'll have no control over the outcome. Will there be complications, will it work, will the trach soon come out?
I try to just push this fear side, when it resurfaces. Over the past several years I have learn to just deal with each day as it comes, and pray that God will meet me at each moment. However the surgery is this week, so it's time to start dealing with it. Friday we take her and I'm sure I'll be a wreck and the fear will be relentless. No matter how long you've waited for it, or how many times you've been through it, it is so hard to send your child away.
When Clara was the NICU I constantly imagined Jesus just laying beside her, wrapping His arms around her, whispering how much He loved her. When I could not be with her over night or during surgeries I especially prayed for Him to keep her safe. That has never changed.
For me now I am again trying to find comfort in knowing even though I am not in control God is and when it is just too scary I know Clara is wrapped in His arms of safety and so am I.
Laryngotracheal Reconstruction Surgery (LTR)
What is it? Clara needs this due to the damage in her airway caused from being intubated for so long in the NICU. The trachea became too narrow due to scar tissue, this is called "stenosis". Her stenosis is a grade 3. Which means it is 71-99% obstructed.
Clara's LTR will be double staged. During first stage her ENT, Dr. Z., will enlarge her narrow airway by opening a scarred area and placing cartilage grafts (cartilage will be from 2 of her ribs)in the openings. This will widen the diameter of the airway. These rib cartilage grafts will be placed on the front and back walls of the airway.
The trach will be put back in below the site of reconstruction and a small stent is placed in the area of the grafts above the trach tube.
If the surgery is successful and the grafts heal properly the second stage of the LTR will involve removing the trach completely.
Important things we Know. Clara's hospital stay will be up to a week with a 2-3 day day stay in the PICU. There will be a tube from her chest that will drain her incision. As with any surgery there are possibilities of situations where she could get sick and have to be ventilated.
Clara will have the trach after the surgery, She will keep the trach after the first surgery while the grafts heal properly. Weeks later the stent will come out through a microlargyngoscopy and a bronchoscopy. Her doctor will reopen the incision and cut the stitch that holds the stent in place. The stent is removed through the mouth.
After the stent comes out Clara will have monthly broncs at UNCCH to monitor the airway healing process. These are outpatient procedures.
How long until the 2nd stage of LTR: This is unclear. It could be months, to a year(s). It depends on how the graft heals and Clara's health. She grows scar tissue quickly. So..this could lead to the repaired area narrowing again after surgery . This will be monitored through her monthly broncs. Repairs will be made if needed. Clara also has reflux which can irritate the airway. She is on two different medications for this. But you never know if silent reflux is happening.
Will this upcoming surgery change our daily routine? Nothing will really change. Our lives will go on with still her trach in. We do need to be careful when the stent is in and be diligent with our trach care. I have read where children have had a really hard time with the stent and regress with eating and drinking because it is so uncomfortable. I do not look forward to that.
Later on in the summer when the stent is out we do plan on going on a vacation for a week. Her doctor defiantly promised me the stent would come out before we leave.
When the surgery is over and she is okay, home with us, then the thought of starting the process of getting the trach out will be exciting for me. I do not know what to expect or how long it will stay and I am okay with that. I want it be right for Clara, when she is ready. This photo below what the first time I saw her after the tracheostomy. It was the first time ever I saw her beautiful face without a tube. The black mark on her chin was to mark the middle of her neck for the incision. So many parts of that day I thought I would want to forever forget, but actually I want to remember it all. That was the day Clara's life was saved. It brought her home to us just 2 months later.
Her trach is apart of her. I think it has all taught us and the people around her a lot. We've wanted it out a thousand times, but have never been ashamed of it. I hope the day it finally comes out, it is for good. Then she can move on to the "naked neck club".
I will keep posting updates on Clara throughout the surgery and stay in the hospital. Please keep checking for those and continue to pray for her this week, Friday, and for her stay in the hospital.
1 comment:
MANY prayers and hugs for your family. This is a scary, but exciting time with the thoughts of positive results. I pray that your anxiety is lessened. I pray that the surgeons have guidance from above. And I pray that the surgery is a success with fast healing . I live your family and anxiously await good news.
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