Getty Owl Foundation

Hospital Update 2 – Getting HORRIBLY Worse Before it Gets Better

From Mark:

Up until now, the Kaiser PICU staff has been great. Then this chump respiratory therapist (“RT”) came into the picture.

Kate and I have been great with all the RTs and nurses during our stay, but there was something odd about this guy. We couldn’t put our finger on it, but something was just not right with this guy. We each felt it in our bones the minute he walked in the door.

Kate went to bed in the parent bedroom, and I did Getty’s midnight respiratory treatment with this RT. I felt nervous the whole time, unlike the nice level of comfort I have had with all the other RTs helping with Getty’s care.

Kate and I take the lead in the treatments because we know our daughter. The RTs follow our lead during Getty’s treatments. Given Getty’s fragility in certain respects, if it goes any other way, we know Getty could be in deep trouble very fast.

We got through the midnight treatment just fine as I lead the treatment and coached the RT. I said good night to the RT with a verbal understanding he would wake me up at 4 a.m. for Getty’s next treatment. I went to sleep in the room with Getty.

The next thing I know, I hear an alarm. The RT failed to wake me up before initiating her 4 a.m. treatment, and he caused her to desat to a blood oxygen level of ZERO. That essentially means Getty cannot breathe at all.

Kate and I knew of this risk, and that is why we always take the lead with her respiratory treatments and we never allow an RT to treat her without our full involvement. We know our daughter and we know how to prevent this very situation because we have had to rescue Getty from this very thing ourselves at home on multiple occasions, although in our hands, her sats have never been all the way down to zero.

We worked Getty back up to normal numbers. The RT explained how he started Getty’s treatments without me. As we started to get into it, Getty’s numbers dropped again. The nurse went to the bedroom to get Kate, and we worked to stabilize Getty. Kate, the nurse, and I literally saved her life from this buffoon RT.

Once Getty was stable, we chewed the RT a new one. We chewed out his supervisor. The head honchos came in later and wanted our side of the story. Apparently, the RT told them he didn’t know he was supposed to wake me up before starting the treatment. I explained that there is no way in hell we would ever allow anyone to treat Getty without our involvement. I also reiterated that I had specifically requested the RT wake me for Getty’s 4 a.m. treatment, and this is the exact reason I asked him to wake me up for the treatment and not half way through the treatment. We don’t know what happened to that RT, but they assured us he would not be back in our room.

When the adrenaline wore off, it was back to business for us. We have a daughter to fix.

I asked our intensivist to call Dr. Mary Schroth at university of Wisconsin, the leading SMA pulmonologist in the US. He generously called her and discussed Getty’s care. Dr. Schroth recommended changing up Getty’s care and treatments. Our intensivist modified his orders according to the input from Dr. Schroth. Thank you, Dr. Schroth!

Our regular pulmonologist came in to visit a little later. When he arrived, he saw that Getty’s treatments had changed. The conversation went something like this:

Pulmo: [befuddled] What are you doing?!

RT: We changed Getty’s treatments.

Pulmo: [defiantly] On whose orders?!

Me: Dr. Schroth.

Pulmo: [defeated] … oh.

🙂

The rest of the day went pretty well, and Getty spent quite a bit of time completely weened off oxygen. She has since been intermittently delivered low oxygen but she’s definitely better than she was a couple of days ago. We tried her completely off bipap, but she could only go 8 minutes.

The rest of the treatments went well and according to Dr. Schroth’s protocols. Today’s x-rays still show problems but improvement.

Getty gets 1.5 hours of full-blown respiratory treatments every 4 hours, as follows:

• 4 sets of 5 coughs on the CoughAssist machine with oral and nasal suctioning after each set
• 15 minutes in a vibrating vest that inflates around her and shakes all the crap around in her lungs
• 4 more sets of 5 coughs with suction
• 15 minutes laying in a decline (head-down) position to allow all the crap in her lungs to drain toward her throat (postural drainage), with medicated nebulizers as needed
• 4 more sets of 5 coughs with suction to remove all the junk that was shaken loose and drained toward her throat

After the 1.5 hour treatment is complete, she gets to sleep for 2.5 hours. Then we wake her up and do it all over again. She likes watching Mickey Mouse during her treatments.

We are glad to be rid of that RT, and he rest of the Kaiser PICU medical team is wonderful. The RT supervisors changed the orders so we get the same RTs every time. No new faces. Our regular daytime RT is wonderful, thoughtful, knowledgeable, and takes very good care of Getty. We’re glad the nightmare is over, Getty is in capable hands, and is on the mend.