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?