Officially three weeks in the hospital

Three weeks ago today we drove Muriel to the hospital at Dr. Shetty's orders.  It seems more like three months.  But we are nearing the end.

High fashion

Yesterday her left chest tube was taken out, and the x-ray this morning showed no fluid.  Thank goodness!  Today the IV in her right arm was taken out, so she has use of both hands again.  Her nitric oxide (a mix in her oxygen to keep her blood vessels dilated) has been slowly weened over the past 24 hours, and sometime tonight should be gone.  A giant machine is involved in the NO mix, which has kept her from being able to take any more wagon rides.  She has been on milrinone since Tuesday for the same reason - to dilate blood vessels - which has kept her from going downstairs to the main floor (not sure why they don't want you to be on the main floor on this drug, but that is my understanding).  We have been slowly weening the milrinone as well, and expect to be off of it by tomorrow.

She has been getting IV heparin to anti-coagulate her blood (to avoid the blood clot issue we discovered in her artificial fontan vessel).  That will be replaced by cumadin, which we will be going home on, presumably for life (or until they can find something better).  She got her second dose of cumadin today and have been weening off the heparin.  Expect to be off heparin tomorrow.

She still has the arterial line in her leg and the double access line in her left arm, and the Ng tube for giving oral meds (that has made a world of difference in her vomiting, and as a result her sodium levels are now normal).  Oral meds are still fairly plentiful - some diuretics (which will continue at home for a few months), some to protect her stomach and intestines (saw some blood in her vomit, and suspect she is having stomach troubles), various electrolyte supplements.  All are needed less and less though, as we get closer to getting out of here.

Sleeping on mommy's lap

As for her clinical state, she is almost back to the little girl we brought in here three weeks ago.  She gives the doctors dirty looks, throws her toys off the bed, and is able to point and yell for the things she wants.  She *really* wants out of the bed, and was even standing for a few minutes last night (a bit shaky though).

Its starting to look like Tuesday could be the day we get discharged, which is good and bad.  As Megan mentioned my grandfather passed away this week, and the funeral is Tuesday.  I have family flying in today and tomorrow - will be a very busy week.  Megan may have to get packed up without me here, though either her mother or sister will likely be able to help.

We should know more tomorrow as meds stop and we see how she does.  It is just as likely that they will want to keep her a day or so more.  We want to desperately avoid having to bring her back here, which I understand is common for children completing the Fontan.  Hoping our "return" visit was built into this extended stay already.

Will keep posting even after we get home, as I am hoping this will serve as a log for before, during, and after our Fontan experience, such that other parents going through this know what they might expect to go through.