Amber made it home today! We sat and waited and waited and waited some more today for Amber's TPN to be mixed and ready and delivered....(waited rather impatiently I might ad....) and then after a bit of a snafu with the delivery, we were sent home to meet our home health nurse.

SO, between moving and Amber being in the hospital this week, it has been difficult for me to get online to update.  I apologize for keeping everyone hanging!

Last night was by far one of the worst nights I've ever spent with Amber at the hospital.  I don't believe I've ever seen her in such pain.  The nurses gave her UNGODLY amounts of pain medication and sedatives, but nothing worked.  Amber basically cried all night long.

So I received a call from Brittany yesterday morning, she was concerned about Amber.  Amber had become very lethargic and pale.  Long story short, she ended up at the ER at Meridian Park Hospital, and soon thereafter, transported by ambulance to the PICU at Emanuel with pancreatitis again.  This time her Lipase level was well above 1500, the highest it's ever been.  She's since become more alert, however, with this alertness came an excruciating amount of pain.  (I think I've mentioned before that pancreatitis is one of the MOST painful conditions a person can have.

So, Amber spent all of Sunday back in the hospital.  For about two days prior, she'd been a little extra fussy, and rubbing her tummy.  She also seemed to have discomfort with her feeds and was waking up three times per night.  I was getting increasingly worried about her condition.  Amber always walks a fine line between wellness and sickness....and some days the balance is just "off" so to speak.  I'm always on high alert for things to go south, one never knows with Amber.

You'd think we'd have become more accustomed to being in the hospital by now.  I think the further along we go on this journey, the longer each hospital day becomes.  We were only in for a week this time.  It was exactly two years ago today that Amber was discharged after her "first" episode when she was diagnosed with PVS.  (It was actually her third inpatient hospitalization...the first being when she was born, and the second that week in the NICU for her mysterious seizures.)  I don't think it's something I'll ever become "accustomed" to.&nbsp

We'll start with the good.  Amber has had two good days in a row at the hospital.  Yesterday evening, they restarted her pedialyte feeds and she continued on them overnight.  She seems to be tolerating the fluids well.  She is having diarrhea, but that is not uncommon after a bout of pancreatitis.  We spent yesterday strolling around in a red wagon and reading books.  Amber really loves to look at books and to be read to.  Brittany and I have noticed that she seems to like books that rhyme.  Today I bought her two new books "Llama Llama misses Ma

So Amber made it out of the PICU yesterday.  Unfortunately, the trial of pedialyte feeds was quite unsuccessful.  After only about three hours (and a total of 80ml of pedialyte) Amber began her painful crying again.  She was arching her back and shrieking and there was nothing I could do to console her.  I fought with the doctor on the floor for four straight hours because he was giving her "wussy" doses of fentanyl.  I realize that Amber is a scary kid to take care of, and that they aren't accustomed to having lung transplant kids at the hospital (though,

So, Amber had a rough night dealing with pain.  I was a bit irritated with her nurse last night, but too tired myself to boss her around too much, so we powered through the night.  Amber cried in pain much of the night, and the dose of pain medication was ordered every hour but it seemed as if she needed it every 45 minutes.  The nurse would say "Well, she has another 15 minutes until she can have more fentanyl, how about some versed?"  I wish she had called the doc and told him the dose wasn't quite enough to get her through an hour....it obviously needed to b

So, Amber has been admitted to the PICU at Emanuel Hospital today.  She has pancreatitis again, and I didn't really see it coming.  She has been a little more on the clingy side these past few days (maybe even over the past week) with me in particular.  I thought maybe it was just a phase but I'm thinking now it was her telling me she didn't feel well.