Day 8

Tues Apr 11...Day 8

Yesterday during the day several people commented that her lungs sound better.
I do not listen to her lungs at home.  It stresses me out.  If I hear any crackles or wheezing I freak out and think she is getting really sick.  Then I can't sleep and am stressed and snap at everyone.  It is not pretty.  So it is better for me to go by heartrate, sats and physical symptoms rather than listening to her all of the time.  I have her school nurses report to me how her lungs sound.  This is the balance that I have reached.

During both of her 4 hour trials yesterday she got tired.  She maintained her sats, but I think she was worn out.  When she got tired on the 2nd trial we did a blood gas to see if she was retaining CO2 (the stuff you are supposed to breathe out).  If you retain CO2 it can make you sleepy.  I have not gotten a clear answer on wheat that poke revealed.  I will pin down the team today when they round.

Also after her 2nd trial the RT (Respiratory Therapist) said that her breathe sounds diminished.  And he had previously taken care of her.

So I'm thinking we were just pushing her too hard, too fast.

She is still doing well, I just don't think she was ready for 4 hours straight.

I'm sure they will try again today.

We have a new resident in charge of us today...it is hard when someone hasn't seen how far she has improved.  Hopefully the attending Dr. is the same.  I will have to see.  I don't like change.  \

Sometimes it can be good to get a 2nd opinion and new ideas, but usually it involves a lot of repeating the same information you have just been telling the previous team for the last week.  Grrrrrr... 

For example, she comes in and says so I hear her trial went well yesterday.  No, she got sleepy and had diminished breath sounds.  Then she says OK, I think I'll call your Pulmonologist. 

Seriously, leave the lady (her pulmonologist) alone.  Ellie is fine.  She just wasn't quite ready for 4 hours.  It takes time to heal.

Happy thoughts...Happy Thoughts...Happy thoughts...  trying not to be frustrated today.  I'm sure it's me.  Feeling frustrated with nurse, RT and resident.  So obviously it is a personal problem (officially known as Grumpy Mom Syndrome).  Probably just not enough fresh air and sunshine.  And maybe not enough chocolate!  Ha ha!

Ellie is improving a little each day. 

I think I am just going a little stir crazy.

Today (and every Tuesday) they have a luncheon for inpatient parents of kids who belong to Rainbow Kids (in simple terms it means kids who will have a shortened lifespan).  So hopefully that will help to talk with other parents and vent.

Last night Ellie had a really great night.  No alarms, no desats.  Go Ellie!

For anyone who I ramble on about my low carb diet (I mean WAY OF LIVING...not DIET...right?!?!?!?) to...I have been doing good while inpatient.  I have had a few cheats.  But my stomach is doing really well.  Usually I am downing pepto and prevacid by the bottle because of stress and bad eating while inpatient.  But my stomach has been the picture of perfection.  So that is good.