Getty Owl Foundation

Hospital Update – Getting worse before it gets better

From Mark:

As we went to bed around midnight, I went off to the parent bedroom and Kate stayed with Getty. As Getty would fall asleep, her blood oxygen saturation levels (“sats”) would drop into the 80s (normal being 97-100, less than 95 being cause for concern, and less than 90 being bad news due to inability to breathe and absorb o2). They did quite a bit of work and extra treatments through the night to help keep her sats up.

When we first arrived, we thought an IV would be great to keep her hydrated and would allow easy delivery of meds. However, SMA kids are tough to stick with an IV because the veins are so tiny and the muscles are atrophied. After sticking poor Miss Getty in 7 different places with a needle, they gave up. All that crying for nothing. Poor thing. They tried again last night and got a stick, so that’s good. Now she is getting more hydration as she fights this.

This morning, Getty was still wheezing and moaning as she tried to breathe. She was having problems keeping her sats up, even with higher bipap settings and more O2 bleeding into the bipap line. We were doing more treatments, but we couldn’t do the treatments as well as normal because her sats would drop into the 80s every time we took her off bipap to try to cough her with the cough assist machine. Then she would have to do that much more work through her exhaustion to get herself back up into the mid 90s.

Adding to the complexity is that she is just plain tuckered out. She has not slept well at all since we have been here. We also have to wake her up to do the lung treatments, which probably contributes to wearing her out even more. She needs the lung treatments every 4 hours but she could have respiratory failure from sheer exhaustion. We kicked everyone out and this is mandatory Getty rest time. Kate climbed into the little pediatric bed with Getty and they are snuggling and sleeping together.

The doc came in an explained the patch of fog on her x-ray. The working theory is viral atelectosis (collapse of the lung sacs) as opposed to bacterial pneumonia because the affected area is “roaming” around her lung. If it was a bacterial infection, the bacteria would pretty much stay put on the x-ray.

The worst part of a viral infection is the third and fourth day, which is probably where Getty is now. So we expect today and tomorrow may be pretty rough on her, with some improvement on Friday.

Thanks again for all the love and support. Thanks to Grammy Nola, to Takoa, and to Morgan for stopping by for a visit.

We’re all resting at the Hospital

From Mark:

What a hectic day. Not a lot of change to report except that we are all managing to finally get some rest. I squeezed in a brief nap and Kate is napping now.

Getty’s having a rough go of finding good sleep with all the poking, prodding, and lung treatments every 2 hours. Actually, she just woke up as I write this and she is apparently ready to watch one of her favorite shows on her iPad.

We’re keeping her numbers up with full-time bipap respiratory support with oxygen bleed-in, and she’ stable. They are still not sure if it is a bacterial pneumonia or viral atelectasis (collapse of lung tissue) in the upper right lobe. Either way, there’s no reason to think she can’t be back to her old self in a few days.

Thanks for all the love and support! Hoot hoot!

Well Here We Are

From Kate:

Friday Getty started to have thicker secretions. As I suctioned her I noticed a little tooth popping out. I thought to myself, well now I understand the thicker secretions. Her HR went up that night as well and I chalked that up to pain she may be feeling due to the tooth. I gave her some rounds of Tylonel then Motrin and all seemed pretty good. I massaged her cute little tooth in the hopes that maybe it would stop hurting her and continue on right by her other cute bottom teeth.

So how did we get to the PICU this morning at 12am? Good question. Sunday was rough. HR was still not baseline, but it wasn’t alarming. Secretions were still a little thicker than usual but nothing crazy. We took good precautions to keep her airway clear. Lots of Breathing exercises to keep her lungs clear.

And while we are on the subject of lungs never once did they ever sound rattly. I checked them every hour like I did her temperature. Clear as a whistle. So nothing was really alarming. And then Sunday came.

Getty’s HR was still higher, her temp still fine, but her oxygen levels started to slowly drop. We increased her breathing exercises but still her O2 was lower. She had been on bi-pap 24/7 since Friday and so we were really surprised with the decrease. It got so low that we bled oxygen in to give her a break.

By lunchtime Mark and I decided that if she couldn’t hold 95% O2 levels with oxygen then we would bring her in. So we waited and waited until Sunday night. Getty was so incredibly tired. Her nap was not good and we were hoping that a good night sleep would give her some rest and give us some time to scramble and make plans if we had to bring her in.

11pm Sunday night it was time. We originally thought we should just call the ambulance, but the more we thought about it, we knew she could handle the trip and too be honest we know our little lady. We didn’t want some strangers getting their hands on her if it wasn’t necessary. Now if it were a complete emergency and Getty’s care was completely beyond our scope of care, then yes at some point relinquishing control may have to happen a bit, but not this.

We made the trip to Kaiser Roseville, got to the ER and let them evaluate her for a bit until we were taken to the PICU. Ironically enough we walked the same hallways as we did when Getty got her surgery for her g-tube and Nissen. It felt a little different. Then I knew what she was being treated for but this time we had no idea and that was very scary.

We go to the room and we made ourselves comfortable. The idea at first was to give her an IV. Give her some nutrients and then make some decisions. Getty had a chest x-ray around the same time. We meet all of the nurses and all was good. Then one of the nurses came in to inform us that the doctor on call looked at the x-ray and thought it was pneumonia in her right lung. My entire body felt a current of electricity. I thought I was going to pass out and I also felt sick to my stomach.

The nurse left and then we just kind of sat there. Okay so now what? What does that mean exactly? It was just very quiet for awhile.

Intensiveist came on call and told us what he thought. Basically what he thinks is happening is that the right lung has slight collapse. He didn’t seem overly concerned about it. When I hear collapse I think of men that stick dynamite under a building and the whole thing comes down. So I thought of Getty’s entire lung collapsing. He explained that a medicated nebulizer should open the airway and essentially pop it back open. She will also be prescribed a steroid to combat the inflammation. Getty will also be using a vibrating vest that will help knock loose all of the yuckies. Lots of breathing exercises which include cough assist, suction, nebulizer and percuss.  So we are going to try that and see what happens. He didn’t totally rule out pneumonia, so they have started her on an antibiotic to treat it if it actually is pneumonia. She was swabbed for twice and should hear back to see if she is viral.  So stay tuned, we will be constantly updating.

While Getty’s parents were calmly freaking out. She was her usual spunky self. She was very tired, but she was still in good spirits and always a constant teacher to Mark and I. When I asked the doctor how could we have known earlier that this was what was going on? I was waiting for a temperature increase for my signal. He said, “well I think you can only do the best you can, and I think you guys did great.” that felt good.

Let me also say for the record, there is a phrase that EVERYBODY so far has used since we have gotten here. And it is music to our ears. “You guys know her best, let us learn from you.” Wow really? Awesome.

That certainly was not the case last time, so I am not going question it, just say thank you. 🙂

So here are. Getty is sleeping soundly. A belly full of food and some powerful antibiotics. A round of breathing treatments will be coming in an hour.

I know many people have been saying prayer send sending good vibes. Please keep them coming. We so appreciate it and need it, thank you. And before I go I wanted to show you a picture we took of Getty right after she fell asleep in the PICU. Mark left briefly because we had forgotten a couple of things.  He opened the bag and I was so touched that he remembered Getty’s pink comb. I can’t wait until she wakes up to see her friend by her side and she can say thank you daddy! 🙂

Write more later.

Your Tiny Grip

My dear little Getty,

I gaze into your eyes and I see wisdom there. A smile washes across your rosy bright face, you give a soft hoot, and you let me know that, despite all my hardships, my other failings, my stumblings, and burdens, I am doing right by you. I slip my finger into your little hand, and you comfort me with the slightest motion: your tiny grip. Your fingers draw softly and close against mine like the petals of the most beautiful flower on a still and silent evening. The warmth of your gentle touch radiates like the sun piercing an autumn chill.

While, by this time, we had hoped and dreamed you would roll and sit and play and eat, we must accept that nature has robbed you of your strength.  You cannot explore your universe, so I gladly and willingly expend every effort that you cannot, and I exhaust all the strength I can muster to deliver the universe to you. I am aware that your grasp on my hand is as fragile as your grasp on this life, but just keep hanging on to me for as long as you like because my work has only just begun.

Many will never know or appreciate the full value of such a simple gesture; and I may very well have been one of them had you not been you. Today I know better than to overlook it. I know the effort you expend to extend your tiny grip, and I will never take that for granted. Your meek clasp gives me strength I never knew I possessed and, from what I can tell, our chugging through on your behalf has helped inspire many others to discover untapped strength and generosity of their own.

The labor of your tiny grip tells me you intend to convey meaning exceeding your abilities to communicate. Through your tiny grip, you tell me I have helped make you happy. Through your tiny grip, you tell me you are warm, fed, and comfortable. Through your tiny grip, you tell me I have performed well today as your father.  Through your tiny grip, you tell me you are proud of me. Through your tiny grip, you confide in me your trust. Through your tiny grip, you tell me you would hug me, if you could. Through your tiny grip, you tell me, “Thank you. I love you, Daddy.”

As I return the caress of your delicate hand, I know you understand me, “My pleasure, little owl. Daddy loves you, too.”

Monterey in Pictures

From Kate:

We just got home after a magical three days in Monterey.  It was the most relaxed Mark and I have been since before the diagnosis. Instead of telling you about the trip, I’ll let you see some of our pictures to tell the story. A couple of things to mention before is The Clement is amazing in more ways than one. We literally couldn’t afford it, but it was one of those things that you either go all in and make the trip memorable or you regret not staying at a place like this. And since we are all about not regretting, well we spoiled ourselves rotten. :)Spacious, accommodating, and the view was remarkable.

Once we got to the room we opened up every window and every sliding door to get the coast air in. We strollered Getty right next to the sliding door and she was just mesmerized by the sound and the activity of the waves of the ocean. It was a beautiful sight. As Mark and I unpacked we heard her giggling and wouldn’t you know it she had met a feathered friend within 5 minutes of our stay. We named him Norman.

California Gulls have a distinct red dot at the end of their beak, but I swear it was the same gull that greeted us everyday. On the first day we got here he hung out with Getty for a good couple of hours. What a great host.

I’ll let you decide what she is trying to tell me. 🙂 She certainly is a sassy pants.

On the second day we ventured to the Monterey Bay Aquarium. I don’t know if it is Getty’s age right now, but it seems as though it takes her a little bit to get acclimated to a new environment. When we first got there we took her to see the kelp tanks and she didn’t want anything to do with it. In fact when we would stop to look at things she went “Getty” on us. And I captured it. 🙂

This folks is the look of, “you stopped moving the stroller and I am mad at you”. We were starting to think that maybe the trip was going to be a quick in and out. That was before we went to see the jellyfish. Oh man did she looooooove the jellyfish.

The moment she locked eyes on the big jellyfish exhibit she was smitten. Her stroller was still, in fact when we moved it she got upset. So we stood there for a long time watching the majestic jellyfish dance.

Getty’s view of the jellyfish.

She was so quiet. Oh how I wish I knew what she was thinking. I do know she was contend and very happy.

After the jellyfish daddy and Getty got a quick picture together.

Getty and Mommy

This was the last picture we took before leaving the aquarium. It is a magical place and it was so special to be there are as a family.

The last day ended the way it began. Norman came by to say goodbye. We were sad to go but so thankful to have been able to have this trip together. We hope to go again. The ocean air was good for all of us. No doctor phones calls, no emails, no forms to fill out, just family time and the sound of the ocean. Thank you Monterey!