Overcoming Another Infection

Well, plans have once again changed but we aren't sure exactly what that means.  Ava caught another infection (upper respiratory infection) on Tuesday and has been on oxygen, had a fever (just on Tuesday), has done plenty of coughing with extra suctioning, and hasn't been eating.  By Thursday she was acting more herself with more energy but still required oxygen and was coughing a lot.  By today (Sunday) she has spent some waking hours off oxygen and has eaten a small amount.  The good thing is that she has still been a milk guzzler so with her whole milk and the instant carnation breakfast that we add to it, she still has been getting a good amount of calories through this all.  The downside is that she has most likely burned tons of calories with all her coughing and extra effort to breathe.  Gaining weight has been one of the doctor's concerns over the last couple months.  So as far as the plan that was originally to have a bronchoscopy and possible decanulation mid-October, that will all change.  We go to the doctor on Wednesday and will see if we will need to wait until spring to do this or if there is still the possibility of it happening this fall.  Whatever is best for Ava is what we will be most happy with as we pray for patience and peace.  We ask for prayers for Ava as she completely overcomes this bump in the road.  We'll keep you posted after Wednesday's appointment.

Colorado Road Trip

For the Labor Day weekend our family traveled to Aurora, Colorado to see Ava and Reese's great-grandparents.  It was a perfect weekend getting to introduce my grandparents to our girls for the first time since they don't travel anymore and traveling to high altitudes for Ava hasn't been possible.  All four of us (Zack, Ava, Reese, and I) stayed in the guest bedroom of my grandparents retirement village apartment and had a great time.  Gigi and Grampy had plenty of play time with Ava and Reese, and enjoyed naps just as much as the girls.  Gigi even took us to the Denver Zoo and we saw all the animals.  Running the halls of the retirement village and roaming the village atrium was a favorite of the girls.  We also met a lot of people who "knew" the girls from all the pictures and details they would get from Gigi around their building.  How fun!  We also got to see our friends Keri, Erik, and Riley who moved out to Colorado last spring/summer.  IHOP omelets were a hit! 

Ava did need some extra oxygen support due to the thinner air but once back in Olathe that was history!  Now we are enjoying life back home and after going to the doctor last week, we are awaiting to hear when Ava's bronchoscopy and hopefully removal of trach will be rescheduled.  The plan is mid-October!  I'll be sure to keep you posted!

Playing at home today...it's so much fun to play without that silly oxygen tank and tubing!

Praying for Patience

Just a quick update on miss Ava.  She is still requiring a small amount of oxygen in order to keep her oxygen saturation above 95% but is continuing to sleep well, eat well, and do plenty of playing.  The biggest disappointment is that the removal of her trach has been postponed.  They have a policy that the patient has to be healthy for at least 6 weeks prior to decanulation and since it was scheduled for September 14th, it has to be delayed.  We don't know when that will be...later this fall, next spring???  We go to the vent clinic next Wednesday and we will see how Ava is doing and what they think the best game plan is for her.  So as you can imagine, we are praying for patience.  We look forward to this day so much no matter when it happens but it's tough to know that we will now have to wait a while longer.  It just helps us remember that God has a plan and as parents we need to find peace in the fact that He can take better care of our children than we can. 


Sorry this post once again doesn't have any cute pictures...I promise my next post will include some! 

Eating My Words...

Well my last post said that Ava was getting over an infection and that Reese had dodged the bullet.  Unfortunately all of that changed.  After Ava seemed to be improving, she began coughing even more, having a ton of secretions, slept about 22 out of 24 hours for two days, required oxygen to maintain her needed oxygen saturation, and we decided that the doctor needed to be called again on Saturday.  He had us go to the ER at Children's Mercy Downtown and get chest x-rays.  The x-rays showed that Ava has pneumonia.  They gave us the choice of either having her admitted into the hospital or taking her home.  They normally wouldn't send a patient home who requires oxygen but since she came in on oxygen and they knew we were capable of handling this situation, they allowed us to make the call.  It was a tough decision trying to determine what was best for Ava but we came to the conclusion that being home would be most comfortable for her and hopefully the best environment for recovery.  Over the last couple days she has become more herself.  She has been awake more, eating better, and producing less secretions.  She also came off oxygen this afternoon.  We are continuing antibiotics and keeping a close eye on her but it seems she has turned the corner.

Reese also came down with a 103 degree fever on Thursday.  She had a cough but was acting pretty normal.  We gave her ibuprofen and Tylenol to control her fever and have kept a close eye on her as well.  So far, she has not had a fever since Saturday and just has a cough but nothing too irregular.  Her doctor has given a prescription for antibiotics just in case after hearing her symptoms and Ava's issues but doesn't want us to administer them unless she gets worse. 

So, as you can see...I spoke too soon and thank everyone who know what has been going on and has been praying for Ava.  We'll keep you posted!

On the calendar...

Well, Ava's decanulation (removal of the trach) is on the calendar.  The plan is Friday, September 14th so we will pray that everything continues to go well until then and that things go as best as they can on this day.  She is actually getting over an infection that came with a 104 degree temperature, lots of coughing, extra secretions, increased suctioning, and minimal sleep (for more than just Ava!).   Luckily things were improved slowly with ibuprofen or Tylenol every three hours, breathing treatments every four hours, and extra sleep.  In general she was extra lethargic and wanted to be held nonstop but she continued to eat pretty well.  However, today was a much better day.  She had more energy, maintained a temp lower than 100 degrees, and didn't cough as much.  Reese seems to have dodged it once again. 

I've included pictures and one video below.  Some of the pictures are from our extended family KC vacation since we knew we couldn't do a mountain vacation with Ava this year.  Mountain altitude and thinner air aren't in Ava's best interest right now!  We had a great time with Grammy, Aunt Amber, Uncle Chad, Cousin Brandon, Great Aunt Nancy, Great Uncle Steve, Cousin Megan, and cousins Jori and Josi.  The KC vacation included trips to Deanna Rose, Black Bob Bay Water Park, SEA LIFE the new aquarium, Science City, and the neighborhood pool. 

The laundry basket is always a go-to for entertainment.

Neighborhood pool...it's fun to play outside the pool too!

Neighborhood pool.

Neighborhood pool.

Science City

Science City

SEA LIFE

Future plumber.

What else are we supposed to do with Ava's extra equipment cord?



Mischief

Yep, these girls have been getting into mischief. I would usually say that Reese is the leader in all this but lately Ava's curiosity has earned her the title of leader at times.

We also took a day trip to Omaha to see our friends the Proctors and Seastedts. The car ride home from Omaha which started at 8:30pm was A LOT quieter than the trip there at 8:00am. Ava and Reese had lots of fun playing with their friends Paige, Luci, and Evie!  You know what they say...play hard, sleep hard!

Reese talked on the phone to pass time in the car!

Luci helped Ava and Reese (below) eat their yogurt.

The girls playing...unfortunately Paige is missing in the pics!

Exciting Game Plan

A game plan is what I'm calling it.  We've had game plans before that have needed to be revised so we are well-prepared if that needs to happen but the thought of being "trach-free" is an amazing one!  Yes, "trach-free"!  Ava had a doctor's appointment yesterday and has been off of the ventilator completely for close to two months now.  They like to wait at least roughly three months before removing a trach tube so at the end of August we will have another appointment to check-in and assuming all is still going well we will have another bronchoscopy at the beginning of September.  During this bronchoscopy procedure Ava will be put under and they will put a scope down her airway to look around and will remove any scar tissue that has developed since the last bronchoscopy.  If everything still looks good they will remove the trach tube during this same overnight stay.  The plan is to keep the feeding tube (G-tube) a while longer (from my understanding maybe a month or two?) to make sure she adjusts well and eats well after the procedure.  We have dreamed of the day with no trach cares/changes, not having to hold Ava's arm during her bath, and allowing her to get into a swimming pool deeper than her waist.  We are patient and willing to wait as long as Ava needs but we have to admit we are pretty excited! 

In the meantime we are enjoying every minute...

Riding our zebra at home.

Going to Deana Rose with mommy, daddy, uncle Sean, and aunt Heidi.

Silly sun hats with daddy!