Discouraged

I’m having an overwhelmed day.  How can a little girl that is this cute cause any kind of stress?….

 
Becca was a farmer for Halloween and her siblings were her farm animals.

Well, it started with a cold.  A cold that got passed through each of our children, but when it got to Becca it was quite a different experience for her.  Then, after a week of being sick she had a seizure, threw up, and aspirated (after she went to bed).  We were really close to taking her in to the hospital that night because her breathing was really labored.  I ran to the store to by a pulse ox while Brian woke her up to see if we could get her breathing better.  After a blessing from her Daddy we took turns sleeping next to her to make sure she was breathing ok.

The next day I took her in for a chest x-ray which showed a small amount of aspiration which they ended up diagnosing as aspirated pneumonia.  The next morning she had a fever and another episode of very labored breathing that almost landed her in the hospital.  Suctioning wasn’t helping.  It was scary.  I even packed a bag and called my mother-in-law to head over. Then she got a little better after we turned on Mickey Mouse.  We did this for the next couple days…

Notice suctioning behind Daddy, pulse ox in front along with oxygen which she was on 24/7 for the next week.  I’m so grateful that Brian was able to stay home most of the week to help.  I wouldn’t have been able to do it on my own (she would have ended up in the hospital).

It’s a scary thing to see your child struggle to clear their congestion…very scary.  It’s frustrating to sit there wishing I could cough for her and just hope that she’s getting enough oxygen.  The cheap ($50) pulse ox that we got wasn’t very accurate but we tried our best to monitor her O2 levels. 

 
Here she is after being on her strong antibiotic for a day.  It really made all the difference.

Now here’s the kicker.  After taking her in for a second chest x-ray we found out that it was very mild aspiration.  Her second x-ray was quite clear and the radiologist said it wasn’t clear pneumonia on the first x-ray.  Wow.  If this is what happens when she gets a mild virus with mild aspiration what will happen when she gets a bad virus with lots of fluid in her lungs.  Well, I know what would happen.  She would be in the hospital fighting for her life.  I hate Rett syndrome.  I mean hate.  I’ve never been one to hate, but I HATE Rett syndrome. Our sweet angel Becca is so fragile and I hate it. 

I’m a little teary today.  Becca has had a hard time being back at school.  A dumb cold has completely changed her school experience.  I get notes from school every day saying that she coughed a lot. No longer am I getting happy reports.  Her bus drivers are scared to drive her because they say she has so much congestion they’re worried she’s going aspirate at any moment.  I am super sensitive about Becca.  Today the bus driver said as we packed her on the bus that “he didn’t know if I would send her today because it’s swimming day and with all her congestion/mucous she has…”  I said as politely as I could muster, “Well, unfortunately this is her lot in life.  She’ll likely be this way for the rest of the winter.  I have no idea what to do.”  And then the afternoon bus driver had to bring her home first even though it was way out of order because she was “about to aspirate”.  It makes me feel like a horrible parent.  I know they’re just being nice and trying to help out but it feels like they’re wondering why I send her when she’s congested/coughing and at such a high risk to aspirate. 

Becca’s chest x-ray shows chronic aspiration.  I don’t know what to do about that.  Becca lost 2 pounds since March and 3 since last summer (she weighs 34lbs).  I don’t know what to do about that.  She hasn’t been to physical therapy in months and her joints are stiffening.  I sure feel like I’m failing.  I know that’s dramatic but it’s the way I feel today.  I’m going to go cuddle with my Becca now.  She makes me feel better, it’s that dang Rett syndrome that nags at me.