Reminders...

I have been reminded of many things and taught some things over the course of the last few weeks with Ava... I am writing them down so I can always remember the good that God brings from the bad...

I was reminded that Jesus likes to show up and show off and I LOVE that about Him!!

My daughter taught me that she is even more amazing than I already thought she was and I love her even more than I knew I could.

I learned that no matter how old you are, you never outgrow the feeling you get when your mom sits and rubs your feet. It is a feeling of peace and comfort that is hard to describe.

Janet Douglas taught me that Ava's name means "fullness of life" and "fullness of joy".. and man is she ever full of both!

I was reminded that there is nothing more powerful than the body of Christ coming together in prayer.

I learned that when Greg Davis walks into a room it fills me with hope.

Facebook taught me that the majority of those names on your friends list aren't just there for show... and regardless of when you talked to them last...when it counts they are there for you. Facebook just might be the best prayer chain ever.

I was reminded that it is possible to physically feel yourself being covered in prayer.

I learned that God tears down walls in the midst of storms.

I was reminded that when I can't find anymore strength... God finds it for me...and he has a never ending supply.

I was reminded of how wonderful it his to have Pat Johnson pray over us and our kids and feel the power in his words, and how much I miss hearing him preach every Sunday.

I've always known how much love my kids have for eachother, but I learned the true depth of it...and it blows me away. They are bonded beyond bonded. That warms my heart more than anything else in this world.

I was reminded that no matter how much I fail God He will never fail me.

I learned how to sum up exactly what I was feeling when Stephanie Powell told me "your ulitmate faith is tested with your children...when we realize we are not in control." That is so true. I tend to be a control freak, and I am so thankful that through experiences like this He reminds us that He is all over it, and we need not fear. All we need to do is let go and let God.

I learned that true strength can come in small packages... and a 34 pound five year old can be stronger than the biggest men I know.

Ava has a long road ahead, but this morning I am full of peace about it all.
Psalm 46... "God is our refuge and strength, always ready to help in times of trouble. So we will not fear..."

Home sweet home...

I call this the torture device. Sits mockingly up on the wall and constantly reminds you how long your ordeal is lasting. I kidded Ethan and Austin that we had to get out of there before it hit 100 hours or the room might implode. Missed it by 5minutes :)

SO... most of labs much better...no fever for 24 hours...eating and drinking fairly well... so we are HOME! I can't tell you what a relief it is.

She has four labs still way off... ESR, CK, CRP, and PT/INR. The first three are related to inflammation and the last to blood clotting. That part of the puzzle is still a mystery. She will have those labs repeated in one week. Unless they are down considerably, we will assume some kind of autoimmune disease and probe further.

Unless the fever returns, we will see the doctor next week and go from there. The EE doc and allergy appointments will also be coming up soon. So thankful to be moving in a positive direction. We have known for a very long time things were not right with this little girl.

So once again... thank you all for your prayers and please continue to pray for us to find the all the help and answers we need to make her well. I will post progress as it happens.

Ava asked me to type this for her... "thanks for praying for me and helping me get better. I love you." <3

In Jasper...

Riley. So sick...

Coming around...

Ready to go home...

The latest...

Well the good news is we think we have the answer... the bad news is they "LOST" her blood from this morning... How in the heck to you "LOSE" someone's blood?? I had already promised her no more sticks today. But without that bloodwork we can't finalize it all.

If labs are trending towards normal, the official diagnosis for the acute issues will be severe Adenovirus. That would be responsible for the high fever and her being so so sick and labs being so crazy... They tell me it can take up to 2 yrs to shed the virus completely but it shouldn't affect her like this again and she won't be contagious.

It does not, however, explain her ongoing belly pain. They are still thinking that is from the Eosinophilic Esophagitis and possibly some other undiagnosed problems of that nature. The amazing thing is that one of the nations leading EE specialist is here at Riley and has offered to take her! He has a team that will deal with every facet of the disease.. allergy testing and all. He is going to schedule us with all of them the same day asap so we dont have to make separate trips. He has been so good to us through all this. He is the one that kept looking me in the eye and assuring me they would figure it all out. Just so happens he was here when she came in Friday. ;)

Sooo, IF if the labs are good...and IF the fever stays down.. and IF she is eating and drinking well...we will get to go home tomorrow! I know that is a lot of if's but we are remaining hopeful. This has been a horrible and absolutely terrifying ordeal but we are thankful for every single minute of it because it is getting her the help we have been searching for for over 2 years. I'm sure it was all part of the grand design...everything from the mis-read to that particular Dr. being here for her. Radiologist don't "mis-read" CT scans that badly everyday. Most definately happened for a reason.

There is a big red digital clock up on the wall behind her that started keeping time when we got here and will stop when we leave. Right now it reads 79 hours and 3 minutes. That's not even counting the 16 hours from when she was admitted to Jasper to when we got in the room here. So all totaled it has been about a 95 hour roller coaster ride for us and 95 hours of agony for her. We are so ready for this ride to be over.

Will keep you all updated as we find out more. Thanks to every single person who has prayed for her.. even if only for a minute. It made ALL the difference. Thanks in advance for continued prayers and please... keep praying us home. <3

This is about 5 minutes after the 2nd blood draw... absolutely did her in. :(

Ava...

For those who don't know... Ava has been fighting sickness for a month now...actually much longer than that. We hadn't been able to get a definitive diagnosis despite many trips to the doctor. Last Tuesday she was running yet another fever, but this time it didn't go away.

By Thursday I knew it was time to go back to the doctor. Did blood work and told us to come back Friday. By that time her temp was 104 and nothing was bringing it down so he admitted her at Jasper around 4 in the afternoon. They did several tests... one of them being a CT scan to check for appendicitis. The radiologist that read the report said that possibly there was a perforation in Ava's colon behind her liver and there may be free air and infection gathering there. Since that is an emergency situation our doctor decided quickly to transfer her to Riley to be seen by a GI team and a surgical team.

Now I don't know if any of you have ever ridden any distance at all in an ambulance, but I can tell you there is really no other mode of transportation I can compare it to. Never been in anything that rides that rough. Couldn't possibly be a healthy way to transport someone who is sick. Throws you around worse than any wooden roller coaster at Holiday World. Longest two and a half hours of my life! Not to mention my baby girl was strapped on a gurny fastened to the floor.

We were suppose to be a direct admission but we got hung up in the ER. Were there from 230 in the morning until 6 in the morning. It was such a long night. When they finally got us to a room we where so ready to collapse and sleep or at least stop to cry but unfortunately that was not an option.

The doctors here read the CT scan and determined it was a mis-read. No free air, no infection and no perforation. At first, in our exhausted state, we were furious. Thought we had been put through that ordeal for nothing... But I am telling you, God is so in control it's crazy. Didnt take long for us to realize that it was no coincidence there was a mis-read. Had there not been, we would not have been sent to Riley when we were and it scares me to even think what might have happened otherwise.

Alot has happened between then and now but here is the just of it....

She is stable. Alternating tylenol with coedine and motrin every four hours. Takes the fever to around 100 for about 3 hrs before it spikes back up. Last night her temp was 104.7. That was the highest one so far. The coedine is controlling her belly pain pretty well.

Her labs are still all funky. Her pt/inr is high. (that is blood clotting time for you non medical people) Starting her on Vitamin K for that. Her muscle enzymes are highly elevated. Her sed rate is in the high 50's (indicates inflammation) Her white count is 24,000. (indicates infection) Liver function is off. And a bunch of other obscure ones are either too high or too low. Thankfully all four blood cultures have been negative.

She still has the ongoing mid abdominal pain. Always present but definately worse when the fever spikes. Despite that, the GI team thinks this is not a GI issue and that the pain is associated with the Eosinophillic Esophagits that was diagnosed with biopsies she had during an EGD. (scope down the throat) It's basically eczema of the esophagus. Her food allergies are now attacking her GI tract in the same way they have attacked her skin her whole life.

Added to the list this morning was the diagnosis of Adenovirus. So the infectious disease team has been added to the list of docs that are seeing her. This virus attacks respiratory linings, GI linings, causes fever, diarrhea (which she now has) vomiting (which she has done sporadically last few days) conjuctivis (her eyes are starting to get red) and several other things. It gets dangerous if it causes pneumonia so they are watching closely for that but so far her lungs have been clear on xray. Infection Control docs said there are 50 different types of the virus ranging from mild to severe. If she has a severe type it could possibly be the source we have been looking for. Waiting on more tests results to know for sure. That would be amazing.

She is holding up pretty well. As tiny as she is...she is one of the strongest people I know. Bless her little heart. Needle sticks have become a problem though. As soon as someone other than her nurse comes in the door she starts to go into hysterics. Took four to hold her down last night. No sticks today though. More tomorrow morning :( Still entertaining the thought of autoimmune diseases and have yet to really address the esophagus issue. But praise the lord... we have moved beyond the possiblity of anything potentially life threatening.

Thats where we stand at this point. I have to say, this place is as amazing as I have always heard it was. They are all over it. We have had a steady stream of doctors from all specialties in all day long everyday. Everytime the main one comes in he looks me in the eye and assure me that they will figure it out. Right now I am very thankful for being a nurse and for being able to comprehend and sort through the unbelievable amount of everchanging info that is being thrown at us at any given moment. I feel for all the parents here with no medical background. Must be so overwhelming. I can't even imagine.

I am completely blown away at the outpouring of love and support we have received and the amount of prayer we all have been covered with. We feel each and every one and I have no doubt it has given us the strength to endure these last four days and has helped all the doctors to sort through everything and start piecing it together quickly. Please keep praying... for Ava's ability to endure, for clarity for the doctors, for Aaron and I to be able to hold up, and for the boys at home who miss us and need us back there. <3