Getty Owl Foundation

Going “Getty”

From Kate:

I am uploading a video that has been long overdue. Mark and I have developed a term we use for when Getty feels like she has been “wronged”. We call it “going Getty”. Our sweet Getty has yet to throw a tantrum but she sure has developed her own way of letting us know when we are not doing what she wants. So instead of talking about it, I thought it would be easier if you just watched it. Enjoy!

First Home Bipap Successful

From Mark:

We got the Trilogy home bipap breathing machine earlier in the week, but we had to rearrange a few things in the room before we could set it up in the right spot and use it. We put Getty on home night bipap for the first time last night. She fussed for only about 5 or 10 minutes once we put the mask on her. She then settled in and fell into restful sleep for the rest of the night.

She’s her normal cute-as-a-button self today! 🙂

Got bipap!

From Mark:

Kaiser admitted Getty at just after noon. The goal was to keep Getty for one night, maybe two, so she could get used to a bipap breathing machine for home use. The idea is that she will use bipap at night to reduce her work of breathing, giving her more energy during the day and greater lung capacity.

The intensivist came into the room. He knew us from Getty’s G-Tube surgery just a few weeks prior. He politely said hello and simply asked what our home regimen is for Getty. We ran through the details as he took notes and simply confirmed he would write up his orders just as we said. We asked him to take a peek at Getty’s G-tube, and he said it is the cleanest G-tube he’s ever seen. Things were going much more smoothly than our admission for surgery — until we saw Getty’s blood oxygen levels.

A pulse oximeter or “pulse ox” measures heart rate and blood oxygen levels. The probe usually wraps around the toe or foot. Normal blood oxygen saturation (“sat”) is 95-100%. Anything less than 95 is cause for concern. Anything less than 90 means she’s struggling to get oxygen into her system. At the time of Getty’s G-tube surgery three weeks prior, her sats were always 95 to 100.

The nurse applied the probe to Getty’s chubby little foot. We looked up at the monitor and saw Getty’s sats at 91. Kate and I looked at each other with concern, but just waited to see where the sat reading would go. It fluctuated between 88 to 91. The nurse pointed to an inconsistent wave and wrote off the low readings.

Over the next few hours, we were learning about bipap and talking to the nurse and doctors. However, Kate and I kept peeking up at the sats and seeing readings from 88 to 91. We were trying not to jump to conclusions.

A respiratory tech (RT) had finished training us on bipap when she asked if we had any questions. I asked if she was concerned about the sats being so low for three hours.

The RT looked up at the monitor and a sad and concerned look came across her face. She struggled a moment for words and said, “Unfortunately, this is just a part of the disease. She will struggle to breathe as time goes on.”

“But three weeks ago, her numbers were fine,” we replied.

She gently responded with a tone of sorrow, “It is a degenerative disease. If the number goes down to 85, we should give her oxygen.” She left to get an ambu bag.

Kate and I looked at each other quietly, and our hearts sank. Kate said,” When I asked for more time with Getty after the surgery, I was hoping for more than three weeks.” All we could do was stare at little Getty, trying to come to grips with her condition. I felt completely hollow inside. We just sat together quietly for half an hour.

The RT came back and put an ambu bag at Getty’s head. She connected the ambu bag to the oxygen feed.

The regular nurse came in and looked at Getty’s foot. She said she was going to move Getty’s pulse ox probe to her other foot. She fiddled with the probe and we all looked up at the monitor, hoping. Sure enough, her sats popped up at 97 and fluctuated from 95 to 98.

RELIEF!

Four hours of needless agony was over.

It came time to put Getty on bipap. She fussed on bipap for only about 15 minutes, then settled right into it. What a champ! She stayed on for two hours without incident.

That night, they put her back on bipap. She didn’t fuss at all and stayed on it all night long. The only time she fussed during the night was when the RT came into the room, startling her and waking her up. Otherwise, there was no problem.

The following morning, the nurse confirmed we were bipap trained and ready to go home. We got out of there by midday, bipap in hand.

Heading Back

From Kate:

We got the phone call this afternoon, heading back to Kaiser in the morning. Getty’s bi-pap machine is ready to go so they would like to monitor her for hopefully just one night, maybe two. The less the better, sickness freaks me out. So now I am packing and have become a lot smarter about what to pack. Bringing our own formula, catheters, Farrell bags, button pjs, cough assist, suction, and I know I am forgetting something but the night is still young.

Here is a sneak peek of some holiday pictures our friend and photographer Morgan took of Miss Getty. Oh, our little girl is getting so big. How did that happen so quickly?

Our Pulmo Is Catching On To Us

From Mark:

The other day, we went to visit our pulmo post-op just to let him see how Getty was doing after her G-Tube and Nissen surgery. Just before the visit, I had been communicating with the SMA community about emergency protocols. Some had suggested getting a supply of oxygen.

We asked our pulmo for some O2.

“I’m reluctant to prescribe oxygen for home use. Some people … I prescribe it … and they use it when it’s not necessary.”

He gave a pregnant pause.

“But for you … I’ll do it.”

Eight hours later, a truck pulled up in front of our house. The driver came out and delivered two tanks of O2.

Also during our pulmo meeting, when we brought up getting a home bipap machine, he grew visibly frustrated. He explained that he was working diligently on securing the machine, that he was very upset with the supplier for not having it already, and he had been on the phone the past few days yelling at people to get our bipap.

He is learning that when it comes to helping Miss Getty, we are serious and aggressive. When we ask for something, we’ve done our homework, and there’s a good reason for it. Our pulmo is catching onto us and not only being responsive but also doing some advocacy himself.