We have had a steady week of improvements in Abbey's health.

 Her diet was advanced from clear liquid to full liquid to mechanical soft (we didn't know there was such a thing either) to a regular diet.  This transition was done to give her digestive system time to adjust to how the small intestine was connected to the liver to act as the bile duct during her last surgery. 

Monday, January 21st, Abb started to really complain of back pain. We tried warm packs, massages, changing positions in the bed, moving to sit in the chair and up walking as much as she could handle.  But there was little relief, so this affected her ability to sleep and relax.  It was also a sad day because Liss had to go back home to work on Tuesday.  She had been there since last Wednesday.  It made everyone cry when she left.  Randy and I finally talked Abb into trying to sleep sitting in the rocking chair they have in the room.  We moved it over by the door because Abb was still connected to a pole for her IV's.  I had somehow got myself trapped by the bed and wall and Randy was sitting on the bed with his foot holding the chair back in a reclined position so it wouldn't rock.  Neither one of us dared to move for fear we would wake her up and it had taken us quite a while to convince her to try it and she was now asleep.  So for a little while I just sat on the floor and then after about an hour I did the army crawl under the sink and behind her chair so that I could move over to the bed.  Randy was still in a half sit-up on the bed holding her chair.  The nurse came in at midnight to do vitals and the door bumped the chair and woke Abb up so it was back to the bed.

Tuesday Abb had an IV in each arm that started to really bother her and had to be removed.  The nurses said that sometimes the veins just get tired from all of the medicines that are pushed through them.  She had to have one of those removed and placed in a different position on her arm.  Abb mentioned today that this week was the start of our 8th week away from home and her and I have only spent 2 nights at home during that time.  I didn't want to say, but I had been thinking the same thing but we just try and say we are one day closer to going home now.  

Sunday my parents, Ty and Zac came down for a visit and we were glad that they were able to briefly see a special family that was our neighbors across the hall, the Reynold Family (Team Kenton).  Sunday was a great day because Kenton was finally able to go home and so many of us lined the halls of the hospital and clapped and cheered and cried as he and his sweet family was able to leave the hospital.  We had been following their story on Facebook and knew the circumstances that he was leaving under, but we were hopeful and excited for the time he would be able to be home.  Today we learned that he had passed away.  Our hearts were so sad and each time we walk out of our room we see his door and think of him.  As you walk around the hospital and look in each room you can't help but realize you are not the only one going through trials.  Every door, every room, every parent you pass in the hall is going through something they didn't think they could handle or should have to do.  Thanks Reynolds Family for touching our lives.

Wednesday we had bothered enough people about Abb's back that they brought in an air pump that would add a support system in the bed.  We also requested physical therapy and they came and was able to give her some exercises to do.  We feel like we are starting to definitely know enough about things to be dangerous.  We question the nurses and ask for a lot of clarifications from the doctors on what is the plan for Abb.  Our only focus no matter what toes we may step on is getting Abb the best care.  The staff has been terrific from those that clean the room to those who deliver her meals.  But we always are a little nervous at nurse change which is 7 in the morning and at night.   The pain pump went away today and now Abb would be on oral pain killers.  This was probably the hardest night, she was crying in pain with no relief.  I climbed in bed with her and Randy propped up pillows against me so that she could lay more comfortably.  Except for my snoring, which I will deny everyone was finally able to get a few hours of sleep.  Abb said she would even move her arm and Dad would jump up and be right over by her wondering if he could do anything.  Today Dr. Meyers who was the surgeon who removed Abbey's liver came by at the request of the surgeon who had done her latest surgery to check on the drains.  It was good to see her, we have not seen her since the transplant and a flood of emotions and feelings came back.  I just kept wiping my eyes.  She removed both of the drains which are just tubes with a ball on the end that any excess fluid or blood from the surgery goes into these.  It is a great step to have those removed.  Barbie, our social worker was also in the room and after Dr. Meyers posed for a picture with Abb we all noticed as she hugged her that she had a tear in her eye.  She said what a journey you have had Abb and I'm glad I was a part of it. 

Thursday Dr. Molly came by who is on call from the liver team and gave us the great news that Abb would be able to be discharged Friday back to Ronald McDonald's.  We were thrilled.  Liss had brought some fleece down to make blankets on Wednesday but Abb just didn't feel good.  She wanted to make one for a girl we had met who had a liver transplant the same night that Abb had her second surgery.  So we worked on this and a card to give her before we were to leave.  She is always trying to think of things she can do for others that are there even though I know her back is still in pain.  All IV's were removed so all she has is her pic line and she was thrilled to be able to put on a shirt with her pajama pants.  I went out and asked our nurse to contact Music Therapy because this has been such a wonderful thing for Abb.  Rebecca who has been there for us each time was able to come up and sing for her.  Friday would be the last day of her internship at PCMC and Abb's last day at the hospital so she said it was a perfect way for her to end her assignment.  She laughed when she saw the life size Taylor Swift in the room and we thought she would have loved to hear us all (Randy) included singing her songs.  I think Randy and I got a little carried away on one song with him on the African drums and me with the shakers......  GREAT DAY!!!

Friday Dr. Molly said to Abb, you are such a brave girl! Now we just had to get the antiobiotics arranged, home health care called to set up lab draws and then we could leave.  The infectious disease team at PCMC had been in contact with us and had cultured the bile duct that was removed and felt like Abb needed to be on an additional antiobiotic.  I am thankful for all the medicine that is available, but it is heartbreaking to see her take so many. It was about 4:00 when we were finally given the go ahead to leave.  And yes as you may imagine we were given some second glances as we carried Taylor back to the car.  We bought a massager, icy hot and used the heating pad but it was still a long night but we have more options for making her comfortable here at Ronald McDonald's.

Saturday there was still more pain so Randy reached out to our neighbor Sharik Peck. We were not able to find the massager he suggested so he offered to come down and help.  What a blessing! I know that the weather was very foggy and this took time away from his family but we appreciated seeing him and Cheryl.  It made us all more homesick to see their familiar faces.  Sharik worked with Abb on some techniques for about an hour.  He is so caring and calming that we all felt better (he even helped Liss with her headache) after his visit.  He was able to help Randy give Abb a priesthood blessing to ask our Heavenly Father to ease her pain and help in her healing.  Thanks Peck's we appreciate your friendship and concern for Abb.

Sunday was a pretty uneventful day.  Randy and I have been overly anxious to put it lightly with Abb.   Each time she even acts like she may not feel well we are asking her.  Well she told us that she promises to tell us if she is not feeling well but we just can't keep staring at her and asking her questions all day long.  We will try........ One mountain we had to climb was Abb's hair.  She had it in a pony tail that was braided the whole hospital visit.  From her moving her head around it had made the biggest rats nest that Liss and I could hardly dare even look at it.  We started the washing process and Liss said that it took her over 2 hours to comb out her hair.  She really thought she would have to call our hairdresser about cutting it out.  I think I know how dreadlocks start.  She looked so good after her hair was fixed.  Liss did a pedicure and manicure on her and just spent time talking with Abb and I know that is the best therapy around.  They sure love each other and Liss has been here through it all.  Randy has mentioned on several occasions, thank goodness for Liss.  We have tried to think of how one of us could leave and go back to work but this has really been something neither one of us could have handled alone.  I am so grateful that we have been able to go through this together. 

Clinic visit on Monday went great.  All of our favorite people were there Dr. Jensen, Sharon and Barbie.  Labs were drawn that morning and everything was going steadily down which is just what they want to happen.  We have an ultrasound scheduled for tomorrow (last one) to compare to the one 2 weeks ago after her surgery.  She will also be getting out the 28 staples, she said it will be a lot better last time there were 42.

We have labs Thursday morning and if everything is fine we will be able to come home for the weekend and return on Sunday.  I hate to even get excited yet, it seems like I do everything with guarded optimism.

Abb is in great spirits and it constantly making lists of the things she can't wait to do when she is back home.  I can't wait to be there to check each thing off with her.

I want to thank the great people that I work with at USDA-ARS.  Many of my responsibilities are being handled by great employees who already have a full load without this added assignment.  They always send their concern and love and it has been comforting to not have this additional worry.  Thanks again!!