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

Better late than never...

February 4th...which seems like only yesterday even though it was over two weeks ago...Austin turned 16...the big 1-6...SIXTEEN. I say it over and over to myself but it still doesn't seem possible. I don't know where the time goes. I only know that the older I get the faster it goes by.

I had to work 12 hours on his actual birthday so we celebrated the day before and the day after. As usual, per Austin's style, it was a low key event. Date with the gf and a dinner with all his favorites. Doesn't take much to make that boy happy.

I think this is probably the third or fourth birthday post I have written for him since I started blogging a few years ago. Each time I sit down to write it my mind goes back to that place in time. Austin was...well let's just call it like it is... a surprise. :) I remember vividly strapping Ethan into his carseat the day before his first birthday and driving to walmart in the rain. I made just one purchase that day. A pregnancy test.

All the way home I wondered what if... I had one in diapers, how could I handle another? How would Ethan react to no longer being the baby and the center of our world? We were at a big transition point in our lives. Building a house, new jobs, moving, etc... How could another child possibly enter the picture at this point?

I remember placing that test on the bathroom sink and walking to the kitchen to set the timer. I held Ethan on my hip and paced back and forth alone through the house. Half hoping, half dreading. It was possibly the longest three minutes of my life.

Before I even got all the way through the bathroom door I could see the big red plus sign. I fell to my knees and held on to Ethan and cried tears of joy. Even in the uncertainty of the times I wanted him at that moment more than I could have ever imagined.

Seven months later and 5 weeks ahead of schedule, I remember the 12 below zero weather, the ridiculously long labor, and the words "he's all yours," that the doctor said to me as she placed him in my arms for the first time.

That tiny little 7 pound orange-headed surprise is now an almost 6 foot orange-headed wonder. He amazes me with his many talents, his awesome sense of humor, his sensitivity, his empathy, his intellegence, and his pure-heartedness. He has grown into a person of great faith and conviction and I love that about him.

When I finally did get home from work on his actual birthday, we all watched videos of his first couple of years. He and Ethan laughed and laughed at the way they interacted with eachother. It made me so thankful to see that the bond they have shared from the day Austin came home has grown that much stronger over the years. They truly love, take care of and watch out for eachother. What more could a mother ask for.

God knows what He is doing. Our "surprise" was all part of His perfect plan. Happy 16th Bub. You are one of a kind and I love you. :)

Moments like these...

Been a long time since I sat down to post. Busy busy as usual. Holidays a blur. January almost over. Gotta soak it all in more. Enjoy the song and pics.

Finding Himself at 50...

B. Kent Burns, aka my big brother, woke up to find himself at 50 today. Over the course of the past week I have found myself really thinking about it. I have spent a couple of late nights going down memory lane. Looking at old pictures of the two of us. It just seems a bit unreal to me.

I realized that out of those 50 years, we only actually lived together for 13. He was 5 when I was born and went away to college at IU when he was 18. Thirteen years barely seems like a drop in the bucket in the grand scheme of things. In fact, we built the house I live in now 16 years ago this month. So I have lived here longer than I ever lived with my brother. Somehow though, it feels like we spent a lifetime together in that house on the hill in the woods. And some of the greatest memories I have come from that short period in time.

We had the typical brother/sister love/hate relationship in the early years. And to this day we rarely speak without calling eachother "queer" or "maggot." But to us, those are the terms of highest endearment. There has never been a single day of my life that I have not looked up to, respected, been proud of and loved him beyond measure. He always has been and always will be my hero.

Happy Birthday Queer <3

Christmas morning in Loogootee

Our house in the woods

With our new baby brother

Christmas at Mom's about 9 years ago

Florida 2011

50th Bday Party

Moments....

You know when you have those moments of clarity in the middle of an event, or a situation, or a conversation when you stop a minute and you know you will remember that moment forever. When the rest of the world goes still and the reality of that instant is being ingrained in your soul for all time. I had a couple of those yesterday.

I had an appt. with my surgeon yesterday morning to schedule my gallbladder surgery. Isn't that lovely. Three surgeries in one year. I asked him to take my appendix as well so there won't be anything left to remove... unfortunately I couldn't get him to go for that. :) Any way, every time I go to the Medical Arts Bldg. in Jasper I pass the big cemetery...it's the cemetery the hospital uses for the babies that die in early pregnancy. I have had a baby in that cemetery for 9 years now... but I have never visited. I must've driven by hundreds of times over the years and there hasn't been a single time I didn't think of the baby there. But I have never been able to turn into that drive. Until yesterday.

I had been told where the stone was. You can sort of see it from the road. As I got closer I could see all the little angels lined up around it. Angels put there by other moms like me. The front of the stone says simply "In memory of the unborn children." The back comes from Jeremiah 1:5 "Before I formed you in the womb, I knew you." I sat in the van. I wanted to get out but I didn't. The sun was streaming down and I thought about the excitement I felt when I learned I was pregnant, and the elation I felt when I heard the heartbeat for the first time, and the devastation I experienced when that flicker was no longer on the screen. I stared at the little porcelain angels and read the verse over and over. And through the tears I had a moment of great peace. One of those moments when you just know God is all over it. I felt healing in that moment. It was a long time coming.

Then last night around 10:30 I was in the kitchen. Still thinking of the events of the morning. I had all 4 of the kids school pictures lined up on the counter. I was admiring them and feeling thankful for having four beautiful, healthy children when Ethan walked into the room. I told him again what a great picture he had taken with that famous Ethan smile, and then without even realizing what I was saying I said... "Ethan, the next time you get your picture taken it will be for Senior pictures." As soon as the words left my mouth my chin hit the floor and... so did his. We stood there, alone in the kitchen, mouths wide open, with the same look of disbelief and shock on both our faces. Right now it seems like we stared at each other forever as we both tried to get our heads around that. Then he smiled and put his arms around me and his chin on the top of my head. He hugged me tight and said chuckling "mom, it's ok." We laughed it off and he headed off to bed and I stood there and knew I would never forget that moment.

There is a new song by Selah that I absolutely love. I can't find it on playlist yet, but I will end this blog with my favorite part because it is so fitting in my life... "It makes me smile, but it makes me sad. To know I can't get these moments back. So I'm down on my knees. Help me soak it all in. I want all of this life, that you let me live. And when time flies by, oh remind me to breathe. Cause my heaven on earth, are moments like these."