Tracheostomy..... my worst fear....
It was confirmed last Friday that Mylah required a trach. Having been unexpectedly diagnosed with severe Tracheomalacia, Mylah will require some assistance to keep her airway open. As I blogged previously, nothing could have prepared us for what is in front of us.
We of course had to meet with the physicians, cardiologists, & social workers on staff regarding Mylah's condition. It felt like something out of a movie scene. I waited and waited for the director to yell "CUT" but no words. We were asked to make a decision; proceed with the tracheostomy which also requires a home vent system in order for her to breathe.. OR do nothing and hope that maybe Mylah could maintain her airway on her own with no assistance or if she couldn't allow her to take the breaths that she could eventually passing away.
I remember her face when Mylah had the episode of respiratory distress on the 24th. It was a blue grayish color, bubbles were forming on her lips, time seemed to move so slow. I couldn't see myself allowing my daughter to go through that no matter how much they reiterated to us that she could be made "comfortable". What comfort is there in not being able to breathe?
After her episode of distress I recall the doctor explaining to me that while they were trying to determine what happened, they saw that Mylah was trying to breathe, she just couldn't seem to take deep enough breaths. "Her brain was telling her to breathe" is what he said.
In the meeting those words stood out. She was trying to breathe, her brain was telling her to inhale & exhale. As long as she continued to try, We will continue to fight to give her the tools she requires. If her brain wasn't functioning or her heart was failing then of course the decision would be different. I don't want a life of in & out the hospital for Mylah. I don't want her suffering or in pain. I don't want her to have numerous surgeries.
Today, as I type this entry is the beginning of a life that only few know about. The prognosis is scary. To be told that your child could potentially have a machine helping them breathe for the rest of their life is very overwhelming & sad. There are feelings of guilt, regret, uncertainty, anger, & envy. I mean the list could go on and on. There is also HOPE, JOY, ANTICIPATION & HAPPINESS.
The HOPE that she will not need to have the ventilator for the rest of her life. I've heard from a number of parents who were given the same information, but their children defied the odds and are either totally vent free or on the vent partially.
The JOY that she will eventually get to go home. Home where she belongs. There are some significant changes that will need to happen in our household, but we are making preparations to do what's necessary for Mylah.
The ANTICIPATION of what this trach will do for Mylah. How will it help her? How will it change her. What will she grow to do?
The HAPPINESS that she is still here. Defying odds each and every day.
When I signed the consent for her surgery I felt so bad. I felt like I was signing her life away. I cried & cried. The devil was trying to steal my joy. As he was trying to steal my joy GOD sent his people to me to show me that it's not as bad as I was thinking. I met 2 families whose child was trached. One family, their daughter wasn't vent dependent, but I got to see what the trach looked like. The other family, their 9month old twin son was vent dependent. He had never been home. His parents were preparing to take him home for the1st time. GOD will always place you in a situation to show you that there are others out here whose journey is just as hard if not HARDER than yours. As I left the room of that family I could't help but be so thankful. Mylah had 3 wonderful months at home with us. We could do this.
The vast amount of information the hospital gives you is EXTREMELY overwhelming.
First the trach surgery, then Mylah has to remain stable/still for 1 week to allow the track to heal some. After 1 week they will start to change out the trach tube in her throat. In order for Mylah to be placed on the ventilator that she will be on at home, she must first be 5kg (approx 11lbs). Mylah is currently 3.5kg. Trisomy children sometimes have a hard time gaining weight. So she must remain in the hospital until she gains that weight. After she is up to the preferred weight, she will then be placed on the ventilator system that we will have at home & moved to the vent stabilization floor. She will remain there and we will undergo 4 weeks of "training". We will become the experts in her trachea care. After the 12 weeks, there is a 12 hour shift when the parents must do all the care themselves (a nurse is still with us). After which, the hospital will house us in the hotel on campus for 2 days for a "trial run" then we become eligible to go home. IF our home passes the home inspection needed to ensure that our electrical system is up to code; which I can already say is not.
Letters have to be sent to our local fire department & police department. We must also notify the electric company that we have a vent dependent child in the case of a power outage, we need to be considered "priority residents". Not sure if they know where WE live. Do you now understand how one could want to crawl under a rock?
But we will press on.... We will gradually be able to check each "to do" item off the list. I have faith and believe that HE will make everything alright. Things will fall into place. I can't say that I won't stress about it, because this is very stressful, but we will get through.
Please continue to pray for Mylah. Pray that she recovers, pray that she regains her strength, pray that she gains weight, pray that the cartilage in her lungs gets stronger and that she won't need the ventilation support for long.
I thank you for your continued support and encouragement.