Exposed Wire! Fri 2/22/19 (Post #40)

Today I (Mom) feel like an exposed wire.  I feel on edge.  Like I am sparking with every interaction I have.  I feel like everyone are idiots (or would that be everyone IS idiots?).

I feel like anxiety is such a buzzword.  Everyone says "I have anxiety".  I don't want to just say I am having anxiety because it is "cool" thing to say...but I am definitely feeling anxious today.

So please take everything I say with a grain of salt.  My perception is probably scewed today.  hahaha.  Just know I am trying.  Trying to hold it together.  Trying to be patient.  Trying to hold my tongue.  Trying to breathe.

2:45 PM
She started ampicillin for her UTI.

She is doing a 2nd spontaneous breathing trial right now (still intubated, but letting her breathe on her own).  As far as breathing she looks great.  But she is irritated and sleepy and her HR is higher.

I am pretty sure they will want to extubate today (take out breathing tube).  I am not sure that is a good plan.

I feel like she is not loving the breathing on her own and it is making her sleepy or uncomfortable.

I am not sure I can talk them out of this one...since her breathing looks so good.

I am not sure it's worth the fight either.

I do think she would do fine being extubated and going to bipap.  But I also feel like she is more comfortable being intubated than being on bipap 24 hours a day.  The Dr. insists that this is not true.  I don't know what to say.  Being intubated she is awake and not needing any pain meds or sedation.  She hates the bipap...we have to give her trazodone (a sleeping pill) at night just to tolerate the bipap so she doesn't sit there and shake her head back and forth trying to get it off.

I'm sure part of it is that they need the PICU bedspace.

So we will probably end up extubating and using bipap for a few days.

Infectious Disease came by.  They said that her pseudomonas IS susceptible to these new antibiotics they were looking at.  So we will be switching her to 2 new antibiotics for the pseudomonas.  They are antibiotics I have never heard of.  They are not used in pediatrics normally, but ID feels like it is a better option than the one that she is on now.

 A lung and a tree.  We breathe out what the trees breathe in and the trees breathe out what we breathe in.  God is great!

5:00 PM
She did great on her 2nd breathing trial.

They are going to start the 2 new antibiotics (the ones for the pseudomonas lung infection) today.  One of the drugs is related to the rocephin that sent her into anaphylactic shock.  So they will try 1% of the dose, and watch her for an hour.  Then 10% of the dose and watch her for 2 hours.  Then give her the full dose.

They want to give the first dose of antibiotic while she is still intubated in case she goes into anaphylactic shock again.

They want her off of feeds for 6 hours before extubating, so if they have to re-intubate (use sedation) then her stomach will be empty.

So they will turn off feeds at 2 AM and then they will extubate sometime after 8 AM tomorrow morning.  She will go straight onto her home bipap settings.

You can go to the "floor" (out of ICU) if you are on your home bipap settings.  So she could be on the floor as soon as tomorrow.  I think more likely it will be Sunday.

The saying among special needs families at PCH is "up a floor, closer to the door".  ICU is on floor 2, "the floor" is on floor 3 (usually), so when you move up a floor, you are closer to going home (out the door).

I am feeling worried about extubating her.  I feel like her airway is secure now (being intubated) and it is scary when the airway is unsecure (when she is sick and we are struggling to maintain good sats).  But she is doing really really good.  My worries are unfounded.  But that is still where my brain is settling.  Come on brain...get with the program...pull it together.


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Medical Jokes