Sunday, February 10, 2013

New frustrating hospital experience

Well....let's start this from Thursday night (2/7).  This is over a week now from Connor's palate surgery.  Quite honestly, he's healed nicely. I rarely had those no-no's on him and just said the actual words "no" to him repeatedly. many know since Saturday (2/2), Connor had horrible diarrhea and diapers that were not wet.  For the first time in forever, Mikey and I felt like we were becoming a sort of hypochondriac type parent.  But seriously, one entire week of 10+ diarrhea diapers!  We were either talking to a doctor or seeing one daily.  Wednesday night a doctor had finally checked Connor's electrolytes and said he was good but did get us a nice diaper rash ointment because by this time Connor's bum looked like it was on fire and the rash was extremely red and irritated.  If your baby EVER gets a rash this bad, go get that prescription.  It is now forever dubbed the magic butt paste.  There is a numbing agent along with a few other goodies that the pharmacist mixes and man, Connor loved that stuff.  His horrible rash was nearly gone in 12 hours.  Magic.    ........anywho, Thursday rolled around and the diarrhea sort of stopped by the morning but Connor's diaper continued to stay dry.  Around 6 or so, Connor started puking a greenish yellow color.  I called Mikey (hate doing that if he's at work but sometimes, it is neccessary).  He came home.  I called the pediatrician's office and they suggested to call Primary Children's.  I did and then we were off to the emergency room.  .......once there, with discharge paperwork from his surgery, notes from prior surgeries, meds, etc. and my personal notes of input/output, Connor had bloodwork drawn and ended up getting two bags worth of fluids.  5 hours later, he finally had a pee diaper.  Connor went 17 hours without peeing.  Crazy and mind boggling.   ......with his history and weight having dropped, it was decided he needed to be admitted.   ...being down this road before, I had luckily packed us bags having a feeling we'd have a bit of a stay over.
Since being admitted, we've been fortunate to have the very same doctor each day.  This can be somewhat unheard of so we're feeling more than blessed about this.  She will even be here today though tomorrow she'll be getting her much deserved day or so off.    .....Thursday night and all day Friday was about fluids and keeping him hydrated.  Around 9am on Friday, Connor started to be fed by g tube.  They started slow with 10ml an hour (this is a 1/3 of an ounce) and worked their way up to 40 ml an hour (1 and 1/3 ounce), with a goal of 50ml an hour (1 and 2/3 ounce).  .......Nice goal but something that I shook my head about.  Connor has never handled more than 35ml an hour.  More than that and he's puking the stuff out.  ....well, they ignored me.  Let me rephrase.  I wasn't ignored but they need to see things themselves.  I could have ranted and raved and got my way but that helps noone.  Connor is not hurt if he pukes yet again and proves that mom knows a few things.  .....That night, while sleeping, the nurses were proud to report they slowly went from 40 to 45ml an hour.  And the Connor woke up.  We estimated that he puked atleast 200ml within 5 minutes.  .......hmm, do I say "I told you so" or just realize that this really sucks because Connor will not go home until he keeps the equivalent of 50ml an hour down of 20 calorie formula., they up his formula up to 22 calories.  He's been as high as 26 calorie formula but it apparently has to be a slow process adding calories to formula (which is just adding more scoops to the regular amount you would.    .........Connor did end up drinking 3 bottles yesterday on his own.  That is a bit of a frustrating process itself.  Sometimes he wants it, sometimes not.  He's fairly stubborn and you can't force it or you'll create an oral aversion.
..........this will have to be it this morning.   I want to be there when Connor wakes up.   ......I hope I've somewhat shown what's going on.  We're not sure how long we'll be here.  It will be until he takes the calories he needs to atleast maintain his weight.  He's lost lbs now and this isn't so good at 10 months old.  .....they did discover that his system is not emptying his stomach contents as fast as they should and this is part of the reason he's not able to handle more formula.  They took some blood and will most likely be running a few more tests in the next day or two.  A GI doctor is now on his team and frankly, it's about time he was really looked at here.  The problem has been though that he's had so many other things going on that this was all sort of swept to the side since he was gaining weight.   ........c'est la vie.  We're here now.  It's frustrating and not easy but he'll be in good hands.

He's somewhat sickly because we're not here for fun...but all in all, he's himself and just a bit more tired than normal.

This was our view.  We've since been moved to another room because we were in a room that was equipped to take care of a child with a trach (I can't even begin to spell the word here).  Those little guys need a bit more care so we gladly moved on.  His new room is actually much bigger, away from any flu/rsv kiddos and still great nurses. 

Crib play.

This shows a bit of some weight loss in his neck.  No worries though, he still magically looks quite chunky.

I miss this one BIG TIME.  I will see him today by trading off with Mikey (him coming here, me going home) or us just getting a room tonight nearby.

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