Bound to Happen but Moving On

Well we knew it would happen but we didn't expect it so soon.  We got back from Children's Mercy with Ava trach-free last Friday and sure enough sissy (Reese) wakes up Saturday with a runny nose and cough.  So despite trying to avoid Ava from catching it, she did by Monday.  It was pretty mild but anytime Ava shows signs of infection my gut starts churning.  Monday started with a runny nose and by Tuesday the coughing started.  Through the night on Tuesday she was coughing non-stop and was having a difficult time keeping her oxygen saturation at an ideal level.  She wasn't completely "tanking" but she would hang out around 88-92% in general.  So, since we didn't have a trach and had not gotten nasal canulas from our medical supply company yet, we had Ava sleep in her rocker chair and layed oxygen tubing on her chest, blowing towards her mouth and nose as best as possible.  Yes, you can imagine how difficult that was with her coughing, tossing her head back and forth, etc.  However, we were able to help her oxygen saturation improve Tuesday night, she finally fell asleep around 3:30am, and that was the worst of it.

After Tuesday night she slowly started coughing less and her drainage started to end.  As much as I hate when she requires oxygen I have to remind myself that when other kids, or even you and I, have colds they probably don't have ideal oxygen saturation either.  There are plenty of kids who require oxygen when they get sick and things turn out just fine.  I guess we are just so in-tuned with Ava's oxygen saturation that it becomes something to worry or obsess about.  In fact, on Wednesday our medical supply company came to pick up some of our equipment like our ventilator, suction machine, and other extra supplies, and I was thankful that the pulse-ox machine (the monitor that measures Ava's oxygen saturation and heart rate) wasn't going anywhere.  It's like a security blanket and I may finally feel comfortable giving it up when Ava's 10 years old! 

Now that we are past that, things are great.  We are enjoying not having to do trach cares but are still having to be extra careful during baths with Ava's trach site still being open.  We are just keeping a band-aid over it for the most part and it seems to be getting smaller but not closing.  We go back to the vent clinic next week and then back to see our ENT doctor the first week in November to have her evaluate the trach site.  Below are some fun things we've been up to.  Yesterday (Saturday) was beautiful and we had quite a busy day with the KC Pumpkin Patch with our buddy Nolan, our friend Riley's first birthday party, and dinner/Peachwave with our former night nurse Megan and her hubby.  And speaking of nurses...for those of you who are curious, our nursing will continue through November and then starting in December we will officially have a nurse-free home.  It will be extremely weird because our nurses have become like family.  The thought of having nurses in our home when we were planning Ava's move home from the NICU seemed so crazy.  Now, it's a way of life and one that will be bitter-sweet to move away from.  However, we will never forget the awesome care every nurse has given Ava (and Reese at times!) and will definitely stay connected with them.  Over-qualified babysitters is a wonderful bonus too!!!

 

Thank YOU for another landmark on Memory Lane

If you want me to cut to the chase, Ava came home today trach-free!  If you're someone who wants the whole story...here goes.

We checked in at Children's Mercy yesterday(Thursday) at noon.  After a short wait we were taken back into a pre-surgery room to get vitals, get Ava changed into a gown, etc.  We waited after this for about an hour and a half in order to consult with the anesthesiologist and the ENT doctor who was doing Ava's bronchoscopy and decanulation.  The anesthesiologist came first and after a short visit we waited a while longer for our ENT doctor.  She came around 2:30pm and after discussing the plan we were ushered back to "Reunion Avenue" where we gave Ava hugs and kisses before she was taken back to the operating room. 

It was probably just 10 minutes later when we were called to consult with the ENT doctor who had already completed the bronchoscopy (scope down the airway).  She was very pleased with what she saw and didn't have to remove any granulation tissue.  We now just waited for Ava to come out of the anesthetic.  Less than 20 minutes later they asked one of us to come to the post-op recovery area to console Ava who was pretty grumpy coming out of the anesthetic.  So I went back and felt like I was wrestling an alligator for a while until they could get us a room on a regular floor in the hospital for our overnight stay.  Ava required oxygen at this time in order to keep her oxygen saturation at 95 or above.  The rest of the afternoon and evening she was moody on and off.  Our ENT doctor was going to come by later in the evening to remove her trach and allow her to spend the night without it. 

A little after 6:00pm our doctor came and Zack was able to remove Ava's trach while she was asleep in my arms.  After some labored breathing and some repositioning, Ava was breathing comfortably and just needed a little oxygen "blow-by."  (Oxygen blown in the area she was breathing.)  Not long after that Ava was not needing oxygen and slept a little while longer before being awake for a couple hours to cuddle with mommy and daddy. 

Throughout the night Ava slept well and maintained her oxygen saturation around 94-98% without any oxygen support.  Her site where the trach tube used to be was left open without any bandage and the hole reduced some in size.  This morning she was able to finally eat food and drink her milk, after only getting water (and IV fluids) for almost 30 hours.  We were discharge to go home around 11am and Ava has been doing great at home.  With a little band-aid over her trach site, she is back to playing with her sister in the comfort of her own home.  We will go back to see the ENT doctor in 3-4 weeks and we will learn what the next steps are for Ava's site.  Typically if a trach is in place for over a year there is only about a 5% chance it will close the whole way on its own.  If Ava's does not close it will need to be sutured shut and down the road will most likely need a little plastic surgery to minimize the visibility of the scar. 

With all of that said, first and foremost we are so thankful for God's hand in all of this.  He has guided us through, every step of the way and will continue to be with us through the journey of parenthood.  And from there the thank-yous are endless.  Our parents have been amazing...supporting us, being there for us physically and emotionally, and being tremendous models for us as parents.  Our friends (near and far), neighbors, church family, strangers, all of the individuals at Overland Park Regional and Children's Mercy from the doctors, nurse practitioners, nurses, receptionists, respiratory therapist, and on and on and on.  We can truly say we couldn't have gotten through this chapter in our lives without EVERYONE.  So if you are reading this, that means you.  And if you are reading this and know of someone who we have come into contact with over the last twenty-two months...forward this blog to them.  We know that there are still "epilogues" to this chapter and there will then be many more chapters to come but at this point in Ava's recovery and overcoming the experience of having a trach, we can't be more thankful. 

Swinging before heading to Children's Mercy.

Quick cat-nap before checking in.

Trying to pass time while we wait for the doctor.

The blinds helped pass a little time too.

Daddy getting to remove her trach for the last time.

Watching Ava's response to being trach-free.

Finally...food!

 

Can't get enough Cheerios!!!

 

 



Let's blow this popsicle stand...and leave that old trach behind!

Memory Lane

At a time like this I constantly find myself going down "memory lane."  Today is the day Ava is scheduled to have a bronchoscopy and possible decanulation at Children's Mercy.  Our check in time is noon and the actual procedure will most likely happen around 1:30 or 2:00pm.  We are comfortable with whatever plan God has and know that if Ava is experiencing her last hours with a trach it will truly be one of those special landmarks on memory lane. 

Enjoy a few of the other special landmarks on my "memory lane" below and I will keep you all posted on how today goes as soon as possible.

December 20, 2010...Ava and Reese come into this world.

Ava

Reese

March 22, 2011...Ava is taken to Children's Mercy from Overland Park Regional for a tracheostomy.

All packed up in the travel isolette.



March 24, 2011...Ava has her trach placed and is the most critical state of her life.

April 23, 2011...Reese comes home after spending 4 months at Overland Park Regional.

May 15, 2011...Reese visits Ava at Children's Mercy and they get to lay next to each other for the first time since in the womb. (First family photo!)

June 28, 2011...Ava comes home after spending 3 months at Overland Park Regional and 3 months at Children's Mercy.

Since this blog begins when both girls are officially out of the NICU I will let you browse the blog for other landmark events.  One thing I always want to remember is to cherish all the small things in life as well as the big.

On the Calendar

I'm just now getting a minute to write an update but we officially have a date for Ava's bronchoscopy and possible decanulation.  We got a call from the ENT clinic at Children's Mercy on Monday letting us know that we needed to go for "Pre-Admission Testing" on Wednesday (yesterday) and that her procedure would be next Thursday, October 11th.  Not exactly the advanced notice we were hoping for but needless to say we are really happy to have it on the calendar.  So yesterday we went to sign paperwork, have Ava checked out, answer a bunch of health history questions, etc....A process that is required before scheduled procedures/surgeries with anesthetic.  Things went fine and now we are trying to be patient, washing hands more, praying, and trying to imagine what life will be like without a trach.  The last 22 months (roughly) have been wonderful even with all the ups and downs with Ava and Reese and now assuming it is in God's plan, our family will experience a major "up"!  Please pray for Ava to remain healthy and for her procedure to go as planned uneventfully.  Thank you all so much!