Anne-Marie: Sounds like you had fun with your flu adventures over there...you were not alone.

On Tuesday March 6th at around 6am, my daughter Emily came to tell my wife and I that she thought Claire had vomited.  We looked at her clothes and it seemed as though she did but she’s also teething now and chews on her fingers alot, sometimes gagging herself, so we decided to try and doubled-dose her Cortef in a bottle just in case she really wasn’t sick.  Ten minutes later there was no mistake...she threw up her bottle all over the place.  The wife, naturally, instantly becomes hysterical and gives her the shot.

Off to the ER we go.  The folks at the ER set her up with an IV after several attempts to "find" a vein.  If I can go off on a tangent here for a second, what’s this crap about not being able to find a vein???  It makes me so crazy that I have to leave for fear I might find it neccessary to punch someone in their head!  My wife defends them telling me how small the baby is and how it can be difficult, but to that I say BULL (or another explitive I shouldn’t type here).  It seems to me that setting up an IV is a pretty major part of an ER nurse’s job.  If they aren’t capable of doing it, they should work in another profession.  Would the folks at McDonald’s keep someone who constantly burns all the burgers??  Well, after four attempts, a baby who is so completely hysterical she can barely breath, and one more than "upset" father, they call a nurse down from the NICU who is so good that she not only gets it on her first attempt, she doesn’t even wake the baby up in doing it!  Argh!!

Anyway, several hours and a couple more vomiting sessions later, Claire finally gets a room and is admitted.  She is in the hospital for two days and is released Thursday afternoon.

Jump ahead to Friday evening and here we go again.  Claire vomits again, she gets the shot, and we’re off to the ER again.  She’s admitted again though she doesn’t seem quite as sick as she was earlier in the week but still, she vomited again in the middle of the night while in the hospital.  This time the vomiting isn’t as much of the problem as is the diarrhea...it’s the worst I have ever seen (with three other kids) and it’s at least once an hour.  And the stink...I think they evacuated the hospital floor each time.  :)

The thing that I noticed (as well as the doctors of course) is her blood pressure seems off the charts to me.  The first systolic reading I noticed was 159 whereas a five month old baby should be around 70-100.  I figured the injection could have caused a jump, which the endo confirmed, and the sodium chloride she was getting in her IV may also have elevated her blood pressure.  The IV she’s getting at this point has very little sodium because of her blood pressure, but still, it seems to take forever to come down.

In the meantime, it’s determined that she has "rotovirus" (no idea on the spelling of that one) which is apparently some derivative of the flu that causes severe diarrhea and vomiting.  All three of my other girls as well as my wife and myself kind of feel a little queesy, but none of us get anywhere near as sick as Claire did.  Our opinion is that since this is the first virus Claire has ever had, combined with her age/size, it hit her pretty hard.

She’s finally sent home late Sunday night.  She still has the diarrhea and her systolic bp reading is still high at around 120 yet the doctor feels since she’s no longer vomiting, she’d be better off at home which I agreed with.  The endo comes to the obvious conclusion that we should discontinue the salt supplement and takes it one step further and decides we should also discontinue the Florinef for the time being to see how her blood pressure reacts.  I’m not so sure about the Florinef decision, but we do as we’re told and an appointment for a blood test is setup for Tuesday.

Tuesday comes around and we go in for the blood test.  The endo puts a rush on it because she wants the results right away and we get a call from her after a couple of hours.  She seems kind of concerned and is talking about admitting her to the hospital again!  Apparently the blood work came back with low salt levels and electrolytes all out of whack.  She’s asking if Claire seems sick or is clammy or anything of that sort.  "Not at all" we tell her...the only thing we had noticed that was strange since she was released from the hospital is that she has been sweating alot - profusely.  I mean drenched in sweat while she was sleeping.  So much so that we decided to call the endo the day before and ask her if it was something we should be concerned about.    She puts two and two together and decides that the sweating probably has something to do with the low salt and electrolyte levels and decides we need to start the Flornief and salt supplements again.  She puts her back on her regular dose of Florinef and about 1/3 the amount of salt she was getting before this all started.

We’re up to today now and we’re going back in for another blood test this afternoon.  What a mess this has been!  I’ll tell you though...it kind of goes back to the whole salt vs no salt discussion that’s been had here many times by myself and others.  If the Florinef corrects the body’s salt retaining capacity to essentially that of a baby who has no salt-losing problem, why do we need a salt supplement at all?  It seems our endo is starting to understand why we’ve been asking that question for five months now.  A blood pressure reading that is double what a normal kid her age is not acceptible and must be corrected asap.

My "mission" since the day my daughter was born with CAH has been to treat her as any other "normal" kid.  Without losing sight of the fact that there can be more problems to deal with than there might be in a kid who doesn’t have CAH, I do my best to keep the CAH in the back of my mind 98% of the time and essentially forget about it.  I may quietly do some reading in the backround and ask questions here and elsewhere, but for the most part, I just forget about it until the time comes when I need to remember she has CAH.  During times like this...it gets damn hard to do though.

Sorry this got so long but this is the whole ten-day story in a nutshell.  The flu is going around and it’s pretty nasty...be advised.

Sean