As a quick update.  We made it home.  We have a few more doctors visits in the next few days, to continue to check on grace, and most importantly to make sure that her medicine levels are all under control.  But, we are no longer residents of the hospital, for now.  

I guess that the terrible spiral that we got into that led us to the hospital is that grace will start to feel sick and won't eat as much and get dehydrated, and this means that her medicine will be more potent which makes her kidney function drop way down, and her imune system to turn off even more, and makes her sicker, and less willing to eat, and so pretty soon she can be in a pretty bad shape.  She is all re-hydrated, and nourished now, and on a reduced dose of imune-suppresents.  Hopefully now she will get much better, and we will soon have our happy little grace back

As a quick story:  Just before going home today, grace was in a better mood and finally wanted to get down and explore her room.  She was still hooked to an i.v. however, so we would wheel the i.v. stand out into the middle of the room and let her walk around a little.  She soon descovered that the i.v. stand was on wheels, and a great thing to push around as she went, so we had our little tiny grace, in her hospital shirt, with i.v.s and tape and bandages all over,  holding on to this giant I.V. stand, walking around, it was quite a pitiful/cute/funny little thing to see.  At one point she even grabbed her little bag of treats and thew it on to the i.v. stand to wheel around with her, she was pretty cute.

It is good to be home.  Thank you for your love and support everyone!

Hospital Nostalgia

We got back from our 11 day Road Trip to Oregon about a week and a half ago.  Aside from beautiful pictures, some souvenirs and lots of mosquito bites we also came home sick.  I with my cold and cough, Topher with a cold, (now has turned into a sore throat as well) and Grace with a variety of stuff.  Starting with our first day home, Grace just had a cold.  The next day it was a fever of 102.  The next, a fever of 103.  The 4th and 5th  days fever of 104.  Let me just input here that when I say fever I don't mean one fever that lasts until the Tylenol kicks in and it breaks leaving us a happier baby.  Im talking a fever of 104 for nearly a straight 48 hours.  We gave little Grace tylenol around the clock for about 4 days.  Her fever would never "break".  But just come down a degree, maybe two, after THREE hours.  In another hour, the Tylenol would wear off and she'd be back to 104.

On the 3rd and 4th days of her being sick we went to the little IHC Instacare down the street from us to have her looked at.  The first time by the Family Doctor, the second time by the Pediatrician.  Each time we did tests for Strep, for Ear Infections, for Bladder Infections, and the second day we did a Viral Respiratory panel.  SO fun.  Lemme tell you.  It involves Topher holding Grace's head down, me holding her arms and legs down, and the nurse spraying a load of saline up Grace's nose and then using those brain suckers to suck out as much snot as possible.  Let me just say Grace was so angry her face was purple and she was barely breathing by the time they were done.  ugh.
So, each time we went in to the Instacares, the immediate results of all the tests was negative.  There was nothing they could give her, we were to just tough it out with the Tylenol.  It can probably be understood that Topher and I did not really sleep for those 4 or 5 nights.  But were more like zombies, trying to keep Grace comfortable, trying to break her fever with Essential Oils and wash cloths, refilling the Humidifier, rocking her, singing to her, trying to keep her hydrated.
Anyway by Sunday her fever had started to go away, she was at a low grade 99 or so and we were starting to think she was going to turn around and get better now.  But alas, we were wrong.  The fever traded places with a cough.  A really nasty cough.  And a stuffy nose.  And a bloody noses.  And eyes so puffy and pus encrusted she sometimes couldn't open them.
Tuesday morning Grace's cardiologist called to see how she was doing, we said she had pretty much turned the corner with the Fever but now had a bad cough.
They worried it might be Pneumonia or Influenza, or possibly even that she had the Swine Flu, even though the test came back negative.  
So Tuesday I woke Grace up and took her to the E.R. We waited in a room in the E.R. from 11:30 to 5:00.  Being seen every half hour or so by someone different wanting to check this or that.  Grace screaming every time one of them came in the room. 
Anyway, long story a little less long, it was determined she was massively dehydrated, had a virus they couldn't identify, and because of the dehydration, her immunosuppressant was having free reign, affecting her kidneys at three times the desired level, and so her kidneys were down to half function.
It's now Thursday, and we're in the Hospital for our third morning now.  Grace just doesn't seem to want to get better.  The cough is still there, the crusty eyes, and the cold is still there.  She is fully hydrated now after 2 1/2 days of I.V. fluids.  But she has no desire to eat whatsoever.  Grace! Who LOVES eating at home, and who is constantly saying she is hungry, and who if we let her would eat all day long, junk and more junk!
Maybe I should rephrase...she won't take any fluids...and won't eat anything that would actually have nutritious value for her.  She won't drink anything...we've tried Gatorade, Pedialyte, Milk, apple juice, chocolate milk, grape juice, water...
And all she'll eat is nibbles of cheese, and yogurt melts. 
At this rate we're never going to get to go home. :(
So, coming back to the title of my blog however.  I will say that when we first came to the hospital and got admitted, I actually had a few moments of nostalgia.  I actually missed being here.  I realized I had missed the hospital smell, and being up with her all night snuggling, and I definitely missed the food.  Cheap and oh so very tasty. 
Anyway, hospital nostalgia aside, we are ready to go home.  We have proven time and time again that Grace always does better at home.  She sleeps better, eats better and recovers more quickly.  So, please, pray for Grace to eat something beneficial so we'll get the green flag to head out.  That would be so wonderful.  Especially since on Tuesday, when we originally drove here, it was with the intention of coming home that very evening.  Haha.  How I had forgotten Hospital procedure.  
Anyway.  Sorry the post has been so long.  Just wanted to update.
Thanks for you thoughts, concerns, and prayers, please keep them coming!
Love Alysia, Topher and Gracelyn