Wednesday, June 9, 2010

Our Little Decannulation Sensation

When the doors of the PICU opened yesterday and we walked through, both John and I were immediately hit with the smell of hand sanitizer, fresh plastic and cheap soap, or at least that's all I could distinguish specifically in what most people refer to as "the hosptial smell." John expressed his dislike for the place, and I was immediately thrown back to two years ago when living at the hospital was our life for six months.

When Mikan only used CPAP for the first few days of his life, we were hopeful for a speedy recovery. When he needed the ventilator, we hoped it would only be for a few days. After a few days, we hoped it would only be for a few weeks. After a few weeks, we hoped it would only be for a few months. A tracheostomy was considered a "worse-case scenario" for Mikan's respiratory needs from birth to three months. When he didn't make any progress off the ventilator (a mean CPAP baby on pressures of 10 and nearly 100% oxygen for a couple weeks), he was trached. Even then he was expected to wean off the ventilator and oxygen after his surgery, possibly only going home with a little flow through the trach. Although initially horrified at the news of our son getting a hole cut in his neck, we grew to accept the idea, knowing that less support was better, and if a trach caused him to need less respiratory support, especially a ventilator, we would embrace it.

But Mikan didn't wean off his oxygen or ventilator during his hospital stay with the trach, so we prepared for discharge with a boatload of equipment. Somewhere along the lines we learned that God had ultimate control, so we focused on giving Mikan the best care possible, know matter how complicated or inconvenient it may be.

As many other ventilator/trach parents know, this care included constant suctioning throughout the day and night, troubleshooting alarming machinery before Mikan turned blue from not getting his vent pressures, carting around every emergency item possible and performing rescue CPR at the bedside or even roadside, and forgoing social events because Mikan was too fragile to travel or be exposed to large groups of people, among many other sacrifices I won't bother to list.

Mikan was ventilated till he was 15 months old, and although we had an airway scare during a surgery that led us to believe he would need a major airway reconstruction, this is obviously no longer considered to be a problem.

Although we never would have wished this for our son, I can honestly say I don't regret experiencing it. I've grown more confident as a parent as a result. I've learned to trust God no matter how desperate the circumstances. Most importantly, I've learned to be grateful for what I have and not wish for something I can't control. When Mikan was in the hospital and having a hard time weaning off the ventilator, I remember expressing my frustration to my dad. He told me, "Mikan is perfect in God's eyes, just the way he is." I think that helped me begin to accept Mikan's path, no matter how slow it was. I've been around a hospital long enough to know that there are plenty of kids who don't get their trachs out, or don't survive long enough to receive that intervention, so we are everyday thankful for Mikan's progress.

Yesterday afternoon Mikan was decannulated. He acted like nothing happened afterwards. He resumed his normal activites in the hospital, slept well overnight (except when the nurse tried to get a rectal temperature at midnight- Rectal? Is that really necessary?), and we were able to be discharged this afternoon. Mikan is now napping in his bed, satting 98 percent, with a heartrate of 88. We couldn't be more proud of him.


15 comments:

Colton's Journey said...

Yeah Mikannnnnnn!!!! Yippeeeeeeee~~

Lindsey Corbin said...

This is awesome news! I'm so happy for all of you!

Rachel said...

That is SOOOOOOOOOOOO awesome!!! Congratulations Mikan, you look GREAT!

Mary Ann said...

Glad you are home safe and sound. He looked wonderful yesterday. You would have never known he had a procedure earlier in the day.
Really though....a thermometer reading at midnight....poor Mikan...they couldn't take it under his arm or in his ear. Really??
So happy for all of you.

Alicia said...

WOW WOW WOW!!!! I am so happy for you Mikan!! And for you, Jenna & John!!

Way to go Mikan, you are so strong!!!

Amy said...

Hallelujah! I am so excited for all of you. God Blessings

Michelle and Sean said...

I am so happy reading that everything went well. That is so great!!! I have tears in my eyes reading this! I know what an amazing feeling you must have! He is such a strong little boy.

Hope said...

WooHoo! Yay Mikan!!

Foster mama K said...

woooo hoooo!! Great news!

Jamie said...

i have tears in my eyes as i read this. jenna and john, i started to read your blog because mikan and adali were both born prematurely, at nearly the same gestation just a few days apart from each other. although i wanted no one to have to experience what we were going through, i desperately needed comfort that i was not alone. the comfort i found in your humor and the attitude of accepting what mikan could accomplish and not what he hasn't yet accomplished led to a mini cheering section for mikan by my family. and, it is still going strong today.

jastin, being an ent, means that we have taken special interest in seeing mikan get to this point. we prayed for mikan that this day would come sooner rather than later and if it never did, we prayed for strength for the two of you to accept that mikan would still have a very fulfilling life. you guys are such an inspiration to preemie parents out there. i wish you nothing but the best as mikan continues to amaze everyone and with the new little on on the way!

jamie

Ann said...

Fabulous news! I'm so happy for all of you.

Colleen said...

Oh I have goosebumps! Congratulations!!

Great Grandma Harber said...

This is wonderful news. I am so happy for all you. May God continue to watch over you and bless you. You are in my prayers every single day. I Love YOU all. God Bless.

Joseph J said...

You are all amazing! I don't mind admitting I got a little choked up remembering the road you've traveled to this point. God indeed has a plan for all of us. We don't get to know it in advance, but looking back I am certain that Mikan's story is an inspiration to countless people.

We love you so very much!

All our love,
Poppi (Dad), Nina (Mom), and your siblings, brothers and sister-in-law, uncles and aunt.

DevonLeah said...

OMgosh tears of joy for you all!

Does he look funny to you? Camden's neck looks really long now! =o)