Dear Blog...I'm Blah...

Dear Blog...I feel blah...

Actually, that's not exactly what I feel, cause to me blah is just kind of a down -slash- indifferent -slash- slightly bored with the situation -slash- maybe tired feeling...

I feel OVERWHELMED...ya...that's it...

Do you ever stop and think...I WISH I WAS BORED??!!  Today is that day...I wish I were bored.  Just a little.  Don't get me wrong...I still have days that I don't get out of my pj's AT ALL...but it's still filled with...what do I have to do tomorrow, what am I not getting done today, what am I forgetting to do...ETC...

The two younger boys had ENT appts today to see if they needed to have tonsils and adenoids removed.  Oakley already had her appt, and has to have hers out, along with something done with her sinuses, I'm not even sure exactly what it is at this point..some surgical procedure. 

Parker has to have his tonsils and adenoids out...and to top it off, I had been noticing that he asks "what" a lot, and even when I whisper in his ear, he tends to not hear me.  Well, an hour later after doing a thorough hearing test, we found out that he doesn't hear at a certain frequency.  We don't know what has caused this, and his prognosis is to just watch and wait...thankfully...

Blazer doesn't have to have his out...YET.  He has trouble breathing through his nose, and is complaining of his throat hurting a lot, but he is only 3.  The longer we can hold off...the better.  And frankly, the thought of shoving meds down his throat doesn't sound that appealing post surgery...give the guy a couple years...

So in the meantime, since I have NOTHING better to do...Romy still has all of her appts, and will start her constraint therapy soon.  This is where we will cast her good arm to encourage her to use her "bad" arm.  This will consist of six hour a day treatments for two weeks. 

If anyone knows how to do this and the surgeries, and keep my other children entertained, keep up on my businesses, and keep my brain from exploding...the advice would be greatly appreciated.  I am out of ideas.  OH, and suggesting husband helps is out...he works 7 days a week...the poor guy....

WELP...that's a wrap.  If you don't hear from me in a few weeks...or so...please send help STAT....

Where in the World is...US???!!

It reminds me of that show I used to watch as a kid "Where in the world is Carmen Sandiego" (or something like that) 

We really do exist, and I really have WANTED to post on my blog, and kick myself pretty much daily for it, but what I have come to the conclusion is that I am not going to feel bad for not blogging...I will post when I can...it doesn't matter that my daughter's birthday won't be ON (or close) to her birthday...as long as I get things up, I am fine...or something...

On to the REAL story...

What have we been up to...??  Well, our summer has been CRA-ZAY!!!  Our little Romy has had some surgeries.  We finally got into the ENT back in May where we learned that she isn't hearing out of her left ear, and she has some breathing and throat problems...So as of a couple weeks ago today, my little sweets had some surgeries...Tubes put in her ears, Adenoids and Tonsils taken out, she had to have her Cleft Larynx repaired, and then she had a bronchoscopy with biopsies in her lungs, esophagus, stomach, and intestines. 

Before her surgery, we were feeling bad, like we were just going to ruin our happy girl...it was kind of depressing...This was her the night before...

We got to the hospital at 6:30 AM...I am NOT a morning person.  Romy on the other hand was in a delightful mood even though she was STARVING...we had to bring her current meds, and she looked like she was self medicating for her impending doom...don't worry...the lid was ON... ;)

 She ended up having a huge infection in her tonsils and lungs that we weren't expecting to find, so we were thankful the surgery happened when it did...it was rough on her...more so than I was expecting...but really, how do you plan for something like that with a baby??  When she comes out of anesthesia, she is a thrasher...I learned this on her two previous MRI's...well, add a misplaced feeding tube, and four surgical procedures, and you have one UNCOMFORTABLE child.  She was extremely upset for about two hours, when suddenly bright red blood came streaming from her feeding tube.  They Xrayed her to find out that they had put so much tubing in her that it looped right back up into her esophagus to her surgery site...which is PAINFUL...sigh...here is what happened right after they took it out...she was exhausted...

She stayed in the PICU most of the day, and then we went to the regular Peds floor.  She didn't sleep well, and due to the infection in her lungs had to have several treatments throughout the night so that she could breathe...it was really rough.  We really didn't sleep. 

The next day was filled with wagon rides.  It was the only thing (other than Nubane) that would keep her calm, and not crying.  When we'd stop, or go back to the room, she'd fuss...so we spent most of the day walking her, and only went back to rest or plug her IV's back in...She really was just miserable.  I hated seeing her this way. 

We were discharged late that night, and this was one of the worst nights...her first one without the nubane.  She was so uncomfortable.  She screamed for a few hours, and Brian just walked and walked her.  We put her down to bed, and she was up several hours at night in pain, and crying...it was so sad...so exhausting...Her first week, we had to give her 7 different medications, and we were on a three hour schedule...and that included through the night. 

The nice part was having her on a feeding tube...the bad part, was having her on a feeding tube.  We could tell that it bothered her nose, and wasn't comfortable, but it also made giving her meds so easy.  No fighting or holding her down to take them...

By the second week, her spirits were a little more perky.  She was still miserable, but not lifeless and sad...so it was better.  We had one of our babysitters come and stay with us for about 5 days, and she was the BIGGEST help!!!  Brian has been working his tail off...7 days a week...I don't know how I would have survived the second week without help...I barely managed the first week...and it was just Brian, Romy, and I...the kids were with Brian's parents, and with my SUPER AWESOME friend...who took them for a few days...and spoiled them!!!  What would I do without my amazing support system...I have a lot to learn from those around me...!!

Romy is doing okay now.  She still seems to get uncomfortable.  She is HAPPY to report that her feeding tube is out...not before she pulled it out, and I had to put it back in of course...but it is gone for good, and she LOVES her food.  We have to use a product to thicken all of her liquids, but she isn't complaining. :)

As far as her biopsies go...we did get results back.  Her lungs did not show any signs of her reflux damaging them, so we are thankful for that.  This should mean that having her tonsils out, and her cleft fixed, she will not aspirate as much, which will greatly minimize her chances of pneumonia.  We will do some swallow studies to be sure though...

On a lesser note, we got back results from her other biopsies showing that she does have a condition called Eosinophilic Esophagitis...basically what I know is that something is causing these Eosinophil cells which are like white blood cells to form around the base of her esophagus...it can be dangerous, and is what's causing her to have GERD, or her extreme reflux.  It's usually caused by an allergy to something.  I don't know what kind of road we are going to be on trying to fix this condition...for now, she is on yet one more medication...