I have loved sharing our experiences with all of our family and friends and the thoughts of what I wanted to say were never hard to find.  But, after I posted the news of Abbey's setback I just haven't had the heart to give an update. 

Sorry. 

Friday we were supposed to do our regular home health care visit with lab draw and then head for wonderful home.  At our clinic visit on Wednesday Abbey had the pic line in her arm removed the LAST thing standing in her way of a shower with nothing covered in plastic to protect from the water.  We were all excited, especially Abb.  She was nervous because now all of her lab draws would be a poke.  We have a routine every morning so that we can have her eat breakfast before the labs and her medicine which has to be taken right at 8 am and 8 pm.  So when she woke up around 5 and said her stomach hurt as I talked to her we decided she was probably a little hungry and nervous and that was what she was feeling.  I gave her a small bowl of cereal and then the nurse was at the door.  As she sat in the chair she said I just don't feel good and the bucket was ready and she threw up.  We called the clinic and they said to try and have her take her rejection medicine and hopefully keep it down for 30 minutes which she was able to do before she threw up again.  She asked to go to the bathroom and as we made it to the bathroom her legs just buckled and she fainted.  The clinic said to quickly bring her in and said it should be by ambulance.  As we arrived at Primary's ER they quickly assessed her and she then threw up again, but it was blood this time.  She was having trouble maintaining her blood pressure and so they quickly put in 2 IV's and it was determined that she would need a blood transfusion.  Her liver numbers went crazy.  The two numbers they track had gone from in the 40's to over 500.  They ordered an ultrasound to try and see if they could locate any source of the blood. I just can't even describe the horrible pit in my stomach, could this really be happening she was doing so well and feeling great.  Had we missed a sign, did we not do something, was we starting all over again?  Complete anguish is the only way to describe it.  And as time went on there was only more questions as to what was going on and what had gone on than there were answers. 

As she rested and we waited for her vital signs to stabilize to move to the intensive care the child life specialist at the hospital asked if there was anything Abb would like and she said is music therapy available and soon Rebecca appeared.  She was the same person who had been there the day we left the hospital and sang Taylor Swift songs to Abb.  She remembered Abbey and started to softly sing all of the Taylor Swift songs she knew.  She even followed us up to the CICU (Cardiac Intensive Care Unit) and continued to sing to Abb for a few more minutes while she got settled there.  The PICU (Primary Intensive Care Unit) was so full of RSV and flu that they thought with Abbey's compromised immune system she would be safer there.  It was determined that Abb would need an endoscopy and also a liver biopsy to help in determining what was going on.  As this day went on I realized that one thing that was different was that Abb was very aware of everything that was going on and we were sharing in her pain and worry.  When we had been waiting for the liver transplant because of the extent of her diseased liver she suffered from encephalopathy which makes it so your mind is kind of in a fog.  Wait and worry is what we did...and continue to do.  The results of the endoscopy showed some irritation in the bile duct and that it could be the source of the bleeding which cannot be fixed by surgery.  This was not a common thing and they really couldn't tell us anything more then.  Because of the biopsy Abb had to spend the night on her side (which was not facing the TV) next to a baby who was recovering from spinal meningitis with only a curtain dividing us so it was a very long restless night. 

Saturday was just a day of waiting.....for test results, to be able to finally eat, and to be moved to the 4th floor ICS (Immunocompromised Services Unit) and her own room.  The results from the biopsy showed no rejection as initially thought, but an infection.  Her numbers had improved but they were not sure if it was the high dose of steroids or the antibiotics that had helped.  Randy had blown up a purple hospital glove and we were playing with it to pass the time.  Abb had 3 IV's now and they were placed so she couldn't move either arm so she was getting pretty good at using her long legs to keep it in the air.  We were finally moved around 7:00 pm that night and as I watched the news at 10:00 I wondered if our delay was to give Justin Bieber time to visit Millie whose room was just around the corner from Abbey's.  I noticed a cute paper on her door that said please don't ask Millie about her kiss with JB, Millie doesn't kiss and tell!!

We fasted for Abb on Sunday and just waited for any news of what was the next step.  We learned that she would need to have a pic line put back in :( and also they wanted to do an MRI on Monday to watch the flow of blood in the arteries around her liver.  

Monday morning they told her at 4 am that she couldn't eat or drink anything and that she could only take small sips to take her medicines. This was so she could have sedation as the pic line was placed. But we were never given a time and the day just kept dragging on and on. We played BS a card game and tried to make the time go by. They did remove 2 of the IV's so she was able to itch her own nose! They finally came to have her transferred to imaging at 3:00 for the MRI. They had given her the option of sedation for this but then told her she could only have it for one procedure and she felt like she could lay still for 30 minutes.  She watched a movie on MRI and felt she could do it and then they changed to a CT with the injection so they could track the blood flow. After this the pic was placed and I knew that the sedation was going to be at the minimal amount possible and she was so brave. They said do you want to know what we are doing and she said yes. Right after her transplant one of the first days that the doctors did rounds and came to her room they asked her if they should just speak to her parents outside of her room and she quickly said no I want you to tell me I want to understand. So each conversation about her she has been involved and ask questions and she often corrects us on things that have been said! So they talked her through each step of the pic line and as she squeezed my hand and closed her eyes I just thought how amazing. So the pic line was in and we ordered her dinner which arrived just as our social worker Barb came in for a visit.  I have mentioned her previously in the blog and Abb was so happy to see her and excited for the flip flops she had brought for her from Hawaii.  We said Abb just eat while you visit and she said no that is bad manners so she just waited until the visit was over at about 7:00 to eat!!

Tuesday we were told that there are two possible aneurysms at the connection site on the hepatic artery.  They are waiting to further discuss this with the transplant surgeon and the radiologist to determine what if anything needs to be done.  Each day her liver numbers have improved and gone down which is very encouraging.  We were discharged back to the Ronald McDonald house as soon as possible because of the risk of Abb catching anything that could hinder her progress. 

Each place we were at the ER, CICU, and ICS everyone remembered Abbey.  They would stop by to say hi and wish her well and she was so gracious as they would say you probably don't remember me but she would say thanks for helping me get better.  As Abb would look for people she remembered she said isn't it weird how important people become to you that you have only know for a short amount of time.  I said that is the same for you Abbey you have made such an impression on so many people here with your sweet spirit, courage and no one will be able to forget your beautiful hair and smile!

We don't have any future plans for now except a clinic visit tomorrow which will probably give us a clearer picture.  We want to again thank everyone for your love and concern, meals and prayers!

Love,
The Owen's