The Good, the Bad, and the What?

Kai went into Primary Childrens for a bronch, and ABR, and an ear cleaning.  They did all three at once because he needed to be sedated for the bronch and the ABR, so they did the ear cleaning at the same time due to wax build-up.  Because Kai's ear canals are very tiny and narrow, wax builds up in his ears so we get them cleaned every couple of months.  The ABR was to retest his hearing to see if there are any changes.  The bronch was to reevaluate his airway.

The Good:

Kai's airway looks great.  There wasn't any fluid in his lungs and everything looked clear.  In fact, they were so impressed with how his airway looked, they are talking about lowering his peep on his ventilator even more!  Possibly to a six or a seven.  That would be fantastic!  He has been doing great on the nine, so I bet he could get away with a lower setting.  One step closer to weaning him off the vent!

The Expected:

The ABR showed that Kai's hearing loss is still in the moderate-severe range.  His hearing hasn't changed much in the last two and a half years.  Bummer.  The audiologist said we should be using Kai's hearing aids more.  Haha.  That's funny.  And...I know. The problem is Kai is hooked up to a feeding pump every three hours for an hour.  During that hour the chance of spit-up is about 60%.  When he spits up, it gets everywhere--especially in his hair and on his ears.  Where do expensive hearing aids sit?  That's right--the target zone for his spit up.  Then there is the 45 minutes or so after his feedings that the chance of spit up is about 30%, so that really leaves a window of just over an h
our in between feedings that wearing the hearing aids is feasible.  Honestly, it is just low on my priority list.  He doesn't act any differently with them on.  We have seen small indications that he can hear better, but overall, he just doesn't care.

The Bad:

Lastly, we have the ear cleaning.  Oh boy.  Here's my rant.  When the doctor came out to let us know that Kai was waking up and to let us know about the results of the bronch, he mentioned that he went in a little deep and Kai's ear bled a little, but nothing to be concerned about.  Okaaaay.  That sounds concerning to me, but you're the doc, right?  So, I let it go.

I was in the waiting room with River while J went in with Kai as he woke up.  I waited, and waited.  Even the receptionist to the waiting room thought it was a long time and she called over to see if everything was okay.  They said Kai had some drainage from his ear and they were waiting to make he was fine.  Drainage?  Was his ear still bleeding?

Sure enough, when Kai and J finally came out, the wait had been because J wanted to make sure his ear was fine before leaving.  However, after having the staff page the doctor several times, and no answer for over forty minutes, the nurse said we could be there for hours before we heard back.  Really?  So, we decided to leave, but as we were waiting for the elevator, Kai's ear was bloody again.  We debated staying (remembering his eye), and River's fussiness made the choice for us.  We left.

His poor ear bled for about 2 days (not a lot, just enough to drain out around his ear).  Grrr.  I know things happen, but he has had multiple ear cleanings while awake and never had this happen.


This was the next day

The What??:

The strangest part of the day came in the form of a statement.  When the doctor came in to talk to me, he mentioned sending the results to Country Life.  Confused, I said Kai isn't part of Country Life--not knowing what it was at the time.  I thought it was an early intervention group or something.  The doc looked at his notes and said, "huh, I thought someone said that he was."  I told him no, and that was that.  It didn't dawn on me until he walked away that it might be a care facility.

Sometime later, when the audiologist came to talk to me, she made a similar comment.  This time I clarified, and sure enough, it is a care facility.  I told her very definitively that Kai is home--that he has always been home with us.  She looked at her notes and crossed out "Country Life," which she had written sometime earlier.

Now, nothing against anyone who for whatever reason or another has a child or family member in a care facility--circumstances and reasons are wide and varied--but that has never even been a consideration for us.  We are more than capable of taking care of our child.  He is a part of our family, and I can't even imagine having someone else take care of him (nurse respite aside).  I am struggling enough with him getting ready to go to preschool next month.

I have to admit that I was a little insulted that they would think Kai was at Country Life.  Why would they think that?  Where did that come from?  Do I not look like I am capable of caring for my child?  That really burns me.  Errr... I am getting riled up again just thinking about it.  For one thing, even though it has been over two years since Kai has been in-patient at Primary Childrens, we are still regulars there.  We go up for appointments all the time.  Secondly, I brought him in by myself; unaccompanied by a nurse or anyone else (J had some things to take care of at work, so he came a bit later with River, and my mom was watching Zuri).  Third, even though the doctor who performed the bronch wasn't Kai's primary pulmonologist (his had a family emergency and we decided not to reschedule), the ENT and the audiologist knew us (again, not Kai's primary ENT and audiologist but we had had interactions with both before).  Fourth, the ridiculousness of the registration process: they send an email where I fill out all Kai's info such as medical and surgical history, address, insurance, etc.  Then we get a follow-up call which goes over all the information that I filled out in the email.  Upon arrival we have to check in at the registration desk, where address and insurance, and sometimes an additional medical form have to be re-verified and/or filled out.  Finally, when we are in and the nurse takes Kai's vitals, all the same information is asked again (although usually insurance and address are left out at that questioning).  Sometimes (if we are really lucky) when the doctor comes in, he/she asks an abbreviated version of everything that I have now given four times.  Seriously.  So, I suppose that it shouldn't be a surprise that since I have now repeated the same information anywhere from three to five times, that they would think that Kai resides at Country Life.  Ugh.

I can tell you, I was not happy leaving Primary Childrens that day.  A part of me questions if they would have been more careful with his ear had they known that he was going home to the care of his parents instead of thinking he was going to a facility.  Another part of me wants to rage at the inadequacy of the healthcare system as a whole.  There has to be more efficient ways for information to be collected--after all, isn't that what computers and tablets are all about these days?  There's a computer in every room, and we have to sign the stupid HIPAA and consent to treat form every single time...  I get verifying information, but come on.

I received some great advice from another special needs parent.  She said that she prints out copies of her child's information and hands it to the doctors/nurses/whoever needs it, and has them refer to the paper instead of reiterating everything time and time again.  I am going to do that!  Now, if I can just find the time...