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