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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.

27
Jun
2011

19 Comments

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.”

19
Jun
2011

22 Comments

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!

16
Jun
2011

8 Comments

8 Months Since

From Kate:

I got up yesterday very early. Getty was sound asleep and I peeled myself away from her with the slowest of movements. She is a pretty light sleeper and I knew that if the bed moved in such a way, those blue eyes would have popped out and then there was no way I could leave her side.

Luckily I was able to escape. It was very hard to leave her this morning because I knew that I would be leaving her for the better part of the day. She would stay and hang out with daddy and I would be gone to focus on something outside of the house. This doesn’t happen very often, and every time I do leave, it is very difficult.

This morning was the 2nd Annual GETty Crafty. Over 90 vendors were coming, the weather was perfect, and it was bound to be a huge success like last year’s, so why was I such a wreck? While I was getting ready for the day I couldn’t help but reflect on the 1st GETty Crafty over 8 months ago.

Getty was 7 months old. She was swallowing her food, she was verbal, she could sit in a car seat comfortably, she was not hooked up to a pulse oximeter 24/7, and in some respects Mark and I could continue to kind of live in oblivion because the disease really had not set in yet.

We were just starting to get to know the SMA community. We were making connections with people around the world. We were educating ourselves about this disease and we were in a way waiting for the next shoe to drop so we could spring into action. This disease is so very unpredictable. By all accounts at 7 months, Getty was doing great. We had not been tested by the time the craft fair came around.

The outpouring of support that day was amazing. Hugs and well wishes were plentiful and it was such a comfort to see so many great people offer their love for our child and for our situation. That day will always be dear to me and I hope I never forget the sound of laughter, the conversations, and the beauty of that day.

8 months since that day, well things are just different. Good or bad, Mark and I are just in a different place I think. This disease has changed us considerably as human beings. Getty’s health has been altered in the last 8 months. We have experienced things so far with this disease that no parent should have to ever experience with their child.

As I got ready for the day I cried a lot. I think most of the crying was coming from how I was mourning what used to be and how things have changed so much. You know you get the diagnosis and then when you don’t see lots of changes, you kind of get comfortable in the hope that nothing will change. And then slowly over time those changes tend to paralyze you. I think at that moment I was taking an inventory of all the ways in which SMA was changing my little girl and I was so angry and sad.

As you can imagine after my precise inventory my face looked like shit. So I jumped in the shower for a second time to start over. Note to self, a second shower sure does the trick. I felt like I gave myself a redo and as I went through the routine again of getting ready, I felt a lot better.

So this time around, as I dried my hair I thought about all the things that are great since 8 months ago. I thought about how Getty is verbally communicating with us. I thought about all of the fun memories we are making as a family. Getty has her own iPad, she has been to the zoo twice, she celebrated her 1st birthday, she can operate her switch toys, she is in love with DJ Lance Rock, her eyes light up when she sees Mickey Mouse, she has already been to a baseball game, and she is now almost 15 months, weighs 23 pounds and is 34 inches and full of sass.

I thought about how more and more people are reading Getty’s story and in turn learning about SMA. I thought about all the incredible connections we are making in the community and how incredibly encouraging that feels to keep fighting. We are making headway with our doctors, albeit a bit slower than we hoped but it is happening. The last thought put me in a frenzy of butterflies. We run a non-profit to help fight SMA. You know it hadn’t dawned on me yet what that means until that moment. We have begun a fight and we are literally helping to make change. Those thoughts that consumed me when Getty was diagnosed are now becoming a reality. I didn’t cry when Getty was diagnosed in that neurologist’s office almost a year ago. Three things went through my head as he told us what SMA was and what the prognosis was. “No parent should ever have to endure this.” “We can’t sit back and let this disease determine Getty’s fate.” And “SMA messed with the wrong family.”

So yes it has been 8 months, and yes things have changed. I recognize that and I live with it everyday but at the end of the day it is a choice push ahead or dwell. Standing behind our booth that says, Getty Owl Foundation felt empowering. Having people stop by and ask, “What is SMA?” felt amazing because every time I told a new person about this horrible disease, I felt like I was educating another person and in turn SMA can’t hide to devastate another family.

We gave out about 200 “Facts About SMA” yesterday and that feels great. And even though Getty wasn’t by my side, she still really was. People came by all the time to ask how she was doing, they told me that they have been following our journey for many months, and that they know so much more about SMA. Amazing.

I want to thank some people who helped make yesterday such great event.

Stacey I thank you for being such a selfless friend. You have taken what I would consider a true gift of event coordination and used it for the betterment for our foundation and message. Thank you for your time and your hard work. It was another successful event and I am your humble servant! Looking forward to the next one.

I want to thank my family for coming to help. Mom, Dad, Aunt Colleen, and Cousin Shelley. I love you guys and I thank you for stepping up the plate and helping ALL day.

Thank you to our board members that came to support the event. Stacey, Takoa and Morgan thank you for your kind support and I know you guys would agree that passing out info about our foundation felt both empowering and motivating. Let’s keep this up!!!!!!

Thank you to Angie for helping all day and buying some of my pillows! 🙂

Thank you to Sarita, where did you come from our little angel? You are so gracious with support and love. I am so glad we finally got to meet and I hope this is the first of many events you can help us with.

Thank you to many SMA mommies and warriors, who literally sent me your wonderful items so I could share them with the west coast. Ladies you are awesome!

Lastly, I already know this is cliche, but this event could not have happened without our sponsors and vendors. I got a chance to walk up and down the aisles this time and I was so overwhelmed by the support for my daughter. I had a couple moments of pure emotion when I told a few vendors that I was Getty’s mommy, their eyes swelled up with tears and they were so sweet with kind support. I thank you all for coming and I know that you came to not only sell your wares but to support a cause and that is just simply breathtaking. I do apologize for not totally introducing myself to many of you, I started doing that and then it got too overwhelming, so I gave many of you the cliff note version, “hi, thank you so much for coming.” 🙂

Without fail the day was beautiful , the weather was perfect and we were able to raise a lot of money for the gene therapy program to help find a cure. Thank you to everyone who attended!

The van got packed, I bulleted home to be reunited with my little owl. Holding her last night as we watched Yo Gabba Gabba was awesome! I felt whole again.