Home!

What a very long day.  Its Wednesday (well technically Thursday morning) - a day earlier than Dr. Sajan expected us to leave as of this past weekend.  I was gone all day Tuesday and Dr. Nater actually wanted to discharge us then.  We appealed for one more night - mainly so I could be there to help get her ready and everything packed up, but also because we are both still a little unsure about her oxygen saturation levels.

She is still on 1Lpm of oxygen, which really isn't much, but without it she drops pretty low - into the 70s.  The target according to Dr. Sajan is 85%.  So we went home with an oxygen tank.  On arrival we found that the oxygen company had delivered a whole room full of tanks and a large machine that somehow produces close to 100% oxygen flow from air, with a 50 foot nylon (?) tube.  I'm dying to understand how that works.

We are also squeamish about her weight.  When we arrived a month ago she weighed close to 10Kg.  On checkout she weighed 8.2Kg.  Close to a 20% weight loss!  Wouldn't mind that myself, but on her it makes her look like skin and bones.  We know she is on heavy diuertics, and we can blame most of it on water loss, but also that she hasn't been eating well.  Then the vomiting of her meds and anything she did manage to eat.  We were assured that all of these things would suddenly, magically, appear to resolve themselves when we get her out of the hospital atmosphere.

I'm happy to say that it already seems to be the case.  I made some of her favorite (fat, vitamin K, and egg free) pasta and tomato sauce, and she ate like a horse tonight.  She crawled around on the floor after her sisters - tethered by the 50ft tubing - and seemed to be in a state of shock that she was home.  Megan's phone is still trying to upload the pics - perhaps will be online sometime tonight or tomorrow.

I'm off to bed, but will post more tomorrow about our insurance nightmare.  Should serve as a warning to any Fontan candidate parents following our story.  I'll include her medication schedule which we have to manage.

VERY happy to be home, and can report that Muriel is sleeping soundly in her own bed.  She still has a pulse oximeter tied to her toe, a nasal cannulus for the oxygen, and an Ng tube for meds, but compared to the multitude of things hanging off of her in the past few weeks, she must be relieved.