New Dr.

Monday morning 4/17/17... day 14

It is so hard when the hospitalist (inpatient pediatrician) changes.

We got a new one today.  He seems really nice.  And seems committed to " figuring this out".  That sounds good.  But with each new Dr.  there are different ideas.

New ideas can be good if you want a second opinion, or are looking for new ideas.

But when you had a plan that was good, you don't really need any new ideas.

He said her lungs "sound stiff".  And wants to send in the rehab Dr's to possibly adjust her meds or add some meds.

Rehab Dr's deal with tight and loose muscles.  They are also known as physiatrists ( But no one calls them that).

Yes, she's tight.  She has Cerebral Palsy which is different for everyone, but for her it means loose neck and torso and tight arms and legs.

Cerebral Palsy means that your brain cannot communicate to your body how to move properly. 

Sometimes Cp is a speech impediment, sometimes it is a limp, sometimes it means tightness (spasticity or spastic) and sometimes it means looseness. 

It is not a muscle problem, it is a brain problem. 

It is much harder (if not impossible) to fix a brain problem.

I figured her lungs were tight, but they haven't been expanded for 18 months, since we stopped doing bipap (because of increasing recurring pneumonia).

I figured that is part of why this is taking so long on this hospital stay.  We are rehabbing her lungs.  Stretching them.  Reinflating them.

I don't know that increasing her meds (oral baclofen) or adding in more meds is the solution.  I think time is the solution.  It takes times to stretch out lungs that have been deflated...I would think.  I don't know...but I would imagine.

It's fine.  I am happy to talk to rehab.  They are the best Dr's at Primary Children's (if they send comprehensive care...not just rehab). 

Comprehensive Care Dr.'s deal with medically complicated kids, which we fit the bill.  The Dr.'s are all great.  They know how to listen to and talk with complicated parents.  They truly " get it".

Her blood gas this morning was still bad.  The new Dr was not happy with that.  We still need to do the chest xray.

She has had good ( normal) blood gas' in past years (not this hospital stay) so I think that's what they are aiming for.

I think her blood gas will improve as her lungs improve.  Totally Mikael guessing.

I said, "can't people with chronic lung problems gave higher blood gas ' all the time.  They just used to it."  He said, "yes, but then if you get any illness you get really sick."

OK, good to know.   We don't want that.  So yes, we do want to reach good blood gas.

No desats last night, love that!

Secretions with suctioning seem to be improving ( decreasing).  Could be increased pressures opening up lungs or virus finally dying down.

She seems more alert.  Once again, could be increased pressures or virus dying down.

I thought she was looking awesome.  And was thinking we just needed to increade tome off bipap.  But now the new Dr and her blood gas have burst my bubble. 

I still think she is doing well and will improve with time.

Vitals look amazing this morning.  (Picture is on bipap).