art gallery

 taken at the Australian Chinese friendship gardens in Sydney

 taken at the  Australian Chinese friendship gardens 

 taken at the werribee zoo

koala in a tree taken at the Australia Zoo in Brisbane

 taken at the rose gardens in Werribee

  taken at the rose gardens

  taken at the rose gardens

 taken at the rose gardens

  taken at the rose gardens

taken in Brisbane

no place like home

Yesterday morning when the doctors came around, the doctor from Thursday said, "Why is she still here?" The doctor that has been following us all week said he had no reason to keep us any longer.  Which was good, because we were pretty much finished.  I told him we were very comfortable taking her home without the IV boost of calories and that we wanted the picc line out.  He called our surgeon, who was adamant that she stay on it for two weeks until we follow up with him at his clinic.  After he hung up, he told me that it is ultimately our decision, and everyone on the team, (except our main doctor) doctors, nurse practitioner, nurses, and nutritionist all felt like she is doing extremely well and that we are capable of meeting her needs.  So we chose to pull it.  We'll have to face his wrath in a couple of weeks when we follow up if she isn't gaining weight, but she is ready to do what it takes to make it work.  What it takes-meaning eating extremely high calorie foods and being brave enough to try new protein options, as proteins are so important for healing.  All on a soft-food diet.  We've already been given some great options to try, and are hopeful that we can get her where she needs to be to heal quickly and completely.

So at about 3:00 yesterday afternoon, we headed home.  It was a long, hard two hours for Shawnie but she was so happy to be going that she handled it better than I thought she would. She had to lay down and sleep when we made it home, and spent the rest of the evening relaxing in her very own bed.  Last night was the best night's sleep either of us have had in a couple of weeks and today is going to be a beautiful day.  There's just no place like home!

calorie war

Not really much to say today.  Still just hanging out trying to eat way too many calories. The doctors came around on rounds early and were quite impressed with her caloric intake yesterday. We talked about counting calories to wean her off the TPN IV.   They want her consuming 1600 calories a day.  I said, "How about 1000?" The doctor said, "1400-no less." They are pretty firm on her going home with the TPN in the picc line.  In fact, they started training me today to care for it at home. They said maybe tomorrow, maybe Saturday, maybe Monday or Tuesday we can come home, depending on the calorie counting over the next couple of days. We're getting to the point that it's just kind of  "BLAH, BLAH, BLAH" in our ears. Sounds pretty grumpy, huh... The nutritionist came in to talk with me this afternoon and figured out all the weight calculations for what she should weigh and what she does way.  She is 3.5 pounds short.  I was like, "Really? We're doing all of this for that?"

This morning Shawnie ran errands around the hospital with her friend Carole (she works here) just to get out of the room for a while.  She's been pretty tired today, she was down resting almost as much as she was up. She had the whole day off the TPN IV, they switched her this morning to a 12 hour run on it, so she's getting pumped full of it all night, and then has the day "off the leash" as I've been teasing her.  She is feeling really well, barely on Motrin for pain, and just as needed.  She is eating things that she isn't supposed to be eating yet and doing really well.

This afternoon, they surprised us with another round of 'rounds,' where the doctors come around to check on everyone.  The attending physician that did the afternoon rounds came in asking,"Why is she still here?" I explained about the 1600 calories and asked him if he didn't think that might be a little steep.  I LOVED his response, "There is no way this girl needs that many calories! All that's doing is contributing to the national epidemic of obesity!"  My thoughts exactly.  He thought we should leave today, but our doctor has said Saturday at the earliest.  We'll find out tomorrow if this doctor had any kind of pull and changed our outlook.

Favorite story of the day: Shawnie's picc line has been bleeding bad, through the dressing, the last two days. The dressing is only supposed to have to be changed once a week, it's a big process where we have to wear face masks, and keep the whole area sterile. Because it has bled through, it's had to be changed both days.  She is getting really frustrated with it.  Tonight, just after they put her back on the drip, she started moaning and whining that it was painful and hurting so bad.  I went and got the nurse to check it.  She checked it out thoroughly and felt like it looked really good. She brought a hot pack to put it on it and at that point, Shawnie finally admitted that she had hoped that the nurse would feel sorry for her and take it out. I never knew she had it in her...

strength

I've been thinking a lot about strength this last little bit.  Shawnie's spine surgery recovery was one of the hardest things that she and our little family have ever survived.  But we did.  When we found out about this procedure, I told myself, "The Lord knows what we've been through.  He knows how exhausted we are.  He knows the pain and fatigue and frustration that Shawnie has felt through all this. Our faith will carry us through this next procedure and He will answer our prayers by making it easy and simple and our testimonies will be strengthened and she will be well." 

Well, I'm here to tell you that a great lesson has been learned this last week.  It has not been easy at all. It has been the most complicated situation we have ever faced. And Shawnie is far from well. But we are learning a profound lesson. We are stronger than we think.  Daily I keep thinking that we've reached our breaking point and then we reach deep down inside and find more strength.  I have felt on several occasions throughout this experience a very strong connection to my Heavenly Father and I know He is pleased to see the strength that we continue to discover inside ourselves.  I've recognized that same understanding in Shawnie's attitude as day after day, things just don't seem to go her way.  She just keeps digging deeper and finds that brave spirit that fights with strength to win, and she is winning, slowly but definitely surely.

Today our doctor stopped in to visit.  He said maybe Saturday we'll be ready to go home.  Probably on the pic line with TPN feedings or with an NJ tube to supplement her inability to consume the needed nourishment.  He wants to see where she gets in the next couple of days before he makes any decisions.  As soon as she heard NJ tube this morning she said, "ok, ok, I'll eat!!"  And eat she has.  She ate at least triple what she was able to get through yesterday.  Tonight her tummy was so big and tight from all that she stuffed in, but she is so ready to ditch the IV and go home and she absolutely refuses to consider the NJ tube. What she made it through was only a third of what she is supposed to consume, but it is definitely a start. And tomorrow they'll probably just tell us that we won't be going home until next week.  And we'll once again reach way down deep in there and recognize that we are even stronger still.

gilligan's island

We didn't know what to do with ourselves this morning without having to go down to x-ray. But the surgery team came bright and early with the slamming news.  Friday is the new "maybe" plan for discharge.  They said, "You're the nice kind of people we like to keep around as long as we can!"  My honest response was, "We stopped being nice yesterday..."
They have some pretty unrealistic expectations of what she has to be intaking by way of calories and hydration.  I told them if that's what they're expecting, we'll be moving in for good.  (I did smile when I said it...) I'm hoping as the days go by they'll just get sick of us and tell us to leave.  There is no way with her tummy recovering from what it's recovering from that she will be able to drink 48 ounces of water plus the calories they want at any point this week.  Especially on the full liquid diet.  (The liquid diet doesn't count as the water, either, it's in addition!)  She is feeling great today, she's been teasing everyone and cruising around the hospital halls giggling all day.  You should see us chasing after her with the IV pole, trying not to rip her line out as we try to keep up! She just has a hard time eating, it's still making her tummy hurt pretty bad.

Carole came by to visit us again this morning and brought some fun card-making supplies to keep her busy.  She said, "This has been kind of a Gilligan's Island visit. You're thinking that it'll be a short trip, and then you never seem to be able to escape the island!"  That's how we're feeling today.  But Shawnie said this morning, "This is a great place to be."  She is feeling loved and well taken care of, and has been pretty content all day.  In fact, I'm wondering if her refusal to eat is because she WANTS to stay!!
Tonight she is in the craft room syringe painting.  Keith figures we haven't used enough syringes yet and might as well use a few more.  She ate a whole dish of strawberry ice-cream for dinner tonight, without too much effort, so I'm crossing my fingers that from here we're going to pick up the pace.

a new woman

Well we headed back down to xray for our now daily radiation party this morning to do a swallow study to see if the tube was ready to come out.  Shawnie was a great sport about drinking the barium, probably because she had reached the point of delirious hunger pains that she could imagine it was just about anything.  It wouldn't go through the new part of the esophagus, it would just pool right above it unless she was lying on her left side, then it would trickle through, which was really weird. The radiologist was freaking out about it saying that she did not feel like the tube was ready to come out and that it looked extremely abnormal.  I about passed out on the floor from disappointment right there.  Shawnie was completely fighting back tears, but kept herself together as we headed back upstairs.  The doctors had been so positive that it was going to be fine, that we had let ourselves be hopeful as well.  About 45 minutes later, our surgeon called and all the nurses and techs came running in to tell us that they were going to let us take the tube out.  I talked to the doctor on the phone and he said the xrays looked beautiful.  I told him about the radiologist freaking out and he said she freaks out about everything.  He said we could start her on clear liquids today, so the nurses had a cherry slushie (at her personal request) waiting for her right after they pulled it out. She only made it through a few bites, though, and then had to take a break.  She's just been sipping small bits here and there all day and it's making her tummy feel pretty sick as it's trying to start working in its new form.  I have a feeling it's going to be pretty slow progress from here.  She tried to eat jello tonight and felt like it was stuck for a really long time afterwards.
They will not send her home like this because she is so frail and thin and is not getting her nutritional and caloric needs.  We'll have to either stay until she is at the point that she can intake what she needs, or there is talk of us taking home the TPN feedings with the pic line for a while. 
She was up a lot of the day today and we had more fun visitors that really helped to lift our spirits and pass the time.  She went on a couple of walks through the halls and kept running into people that she knows from all over the place, old nurses, summer camp friends...some of which, she didn't even know, they just remember her!  She is still really tired, but she has been like a new woman since they pulled out the tube.  Her spunky little soul is seeping back through her fatigue.  It's fun to see how she is so loved by everyone who gets the opportunity to work with her.  I love to see the influence that she has and the light that she shares with everyone around her, usually without even recognizing it.

hoping for a happy ending...

Today started with another trip down for another chest xray to make sure everything was really ok.  Only today, she made it all the way down and back up in her wheelchair! YAY!  She was back to bed the second we got back to our room, but within 30 minutes wanted back in her chair again.  Her body is so tired of being in bed, it's cramping up and she is feeling it.  We spent some time this morning fixing up her hair really cute (that always makes a girl feel better...) and by 10:00 Keith and Sari arrived to spend the day. My sister and her husband stopped by, and since Shawnie was feeling up to it, we all went together to the sacrament meeting held here at the hospital for families.  Shawnie had to sit in the front center and Keith was so embarrassed because her IV pole with all her stuff on it, was right in front of the speaker. We weren't sure she would make it through the 30 minute meeting, but by the time they got through all of the songs and the sacrament, there was only time for a 5 minute speaker and then it was over and she had made it just fine! By this afternoon, she was up for over an hour making pom-pom creatures that her friend Carole brought by.  This evening some of our favorite friends surprised us with a visit all the way from home and before we knew it, the day that she was sure she'd never make it through was over!!  The doctor that came by this morning allowed us to turn off the suction that was pulling everything out of her stomach to see if her body could tolerate it.  After a couple of hours she had to go back on for 30 minutes to empty it, but then has been off of it the rest of the day and has been feeling fine!  This means that her bowels are waking up and things are starting to move through.  Our prayers tonight are that the swallow study they do tomorrow morning will have a happy ending.  They are going to put barium down her nose tube into her stomach to make sure that it's not leaking where they cut it open.  If everything is sealed up, she can start clear liquids tomorrow (WAHOO!).  If it's not, it could be up to another week (boohoo). She didn't think she could make it another day, I cannot imagine having to tell her she's got another week... I asked her today what she wanted me to post on the blog and she said, "I'm hungry. I'm hungry. I'm hungry." She is obsessed with eating and was even excited tonight when they decided to pour medicine down the tube into her tummy instead of the other not very fun way...
Keith did sneak her several ice chips tonight (naughty) and she ended up with the hiccups.