Power to the Paperwork

When my mom was going for chemo I was told that bringing my then 4 month old baby into the room was "dangerous" for the baby because of the toxic drugs they were pumping into my mom's body - a policy that seemed to be specific to this hospital.  I "appealed" to the director and she graciously gave me permission to bring him.  She said policies are meant to guide.

But not everywhere.  From what I can tell from the anxiety coursing through my home, nurses are constantly threatened with their license if they don't have exactly the right paperwork for dispensing medications.

For example, once Christian was home the doctor wanted him to be on alternating doses of acetaminophen and ibuprofen following surgery, which is the most standard of drug cocktails.  However, the orders were not written correctly, which was realized sometime in the middle of the night.  Christian did not receive the medication because the order wasn't correct (and some wires were crossed so I didn't know until the next afternoon).

Doctors seem to think nurses are OCD on this point and brush them off.  Nurses seem to think doctors are laissez faire.  But I'd like to point out who suffers.

Immediately after surgery Christian was in more pain that his paperwork could handle.  The nurse did not have the authorization to administer the medication he needed and had to insist that the doctor come bedside to witness his writhing, which took five hours.

I also can't help but wonder why a parent is considered capable of administering medications in their home, but not in a hospital.  When Matthew was sick we had gobs of narcotics I was trustworthy enough to not sell for a little extra income, but I can't give my child the most basic of medications in a hospital.

Which is all to say that Christian has suffered quite a lot at the hands of paperwork.  I wonder if maybe it's time we give a little power back to parents.

Spit Happens

MPS affects everything and one of the first things Christian lost, after talking, was the ability to swallow. When he got his g-tube I was pregnant with Caleb, which was just about 6 years ago. 

Everyone swallows 1-2 liters of saliva every day, so you can imagine what that looks like when you can't swallow. It's messy, and cough-y.

Christian has been coughing a lot and seeming uncomfortable. We decided to go ahead with a procedure called salivary gland ligation, which permanently renders the four saliva glands as non-functioning. You still produce saliva in other glands, but those are the big ones. We're hoping that this helps him be more comfortable.

While he was sedated, our dentist was supposed to have been schedule to work on his teeth but was not.  He happened to have a cancellation and raced across town to yank out 11 baby teeth, all on the verge of coming out and falling down his trachea. The poor kid...

He spent the night at Strong Hospital and was loved on by a rotation of family members and nurses while being neglected by doctors. He was pretty miserable for about 5 hours while his nurse paged the doctor three times for morphine. Apparently the doctors thought that ibuprofen would be enough??? He also had to be on oxygen for a while the narcotics wore off.

After that he was calm and Jason spent the morning at the hospital tapping his toes. Getting a person discharged can be a lot like leaving the earth's atmosphere. Or removing super glue.  Or getting a two year old to say "yes."

He came home around 1 pm today which makes Jason an official rock star.  Our nurses are taking care of him overnight tonight and he'll be home for the rest of the week recuperating.

We will also be recuperating among the piles of laundry, dirty bathrooms and stacks of mail.