Getty Owl Foundation

Tell 5!

From Kate:

I woke up this morning like most mornings with a desire to end SMA. For most of my day I am functioning as regular Kate, Getty’s mommy, and I think I also have a alter-ego that is constantly plotting how to end SMA. I am still working on the alter-ego name, but for now the plotting continues.

The Getty Owl Foundation has a few amazing events coming up that I will talk about next week. They are more local and I know will have a big impact on our Sacramento region. But today’s plotting took on a worldwide level. I found myself doing the cartoon villain wringing of the hands. 🙂

I am calling it “Tell 5!” Which means I challenge and encourage anyone to tell 5 people about SMA. With August being National SMA Awareness Month, I thought it was only fitting to ask everyone now and see who is up for the challenge.

Okay so how can you help? Easy-peezy!

I will send this package out to ANYONE that is interested. It is FREE!

Enclosed: (5) What is SMA postcards and (5)Getty Owl Foundation Bracelets

If you are interested in receiving one of our Tell 5! packages, just email us at hoot@gettyowl.org. It is that simple!I don’t care where you live, if you are up for the challenge I will send it. 🙂

Now I want to take Tell 5! a step further. I want to do a GIVEAWAY!!!!!!!!

For all who receive a Tell 5! package, take a picture of yourself and the person you are giving the SMA Awareness stuff to, with a little write up of the experience and you can be entered into a drawing for:

-$50 Visa Gift Card

&

-CD of Sweet Water Child, Lullabies for Getty

So you really have 5 changes to be entered! Email all pictures and write-ups to hoot@gettyowl.org. We thank you in advance for your commitment and support to end SMA.

Deadline for Tell 5! Package inquires is August 17th.

Deadline for picture and write up submission is August 31st.

HOOT! HOOT!

Out Walkin’

From Kate:

Sacramento’s weather has sure been funny this year. Days that should be toasty just aren’t and then we had so much rain that you would think we were in Oregon, which by the way is not a dig at Oregon. Mark and I love Oregon for many reason, one of which is we were married there. 🙂

But the weather has been a bit unstable. Now I am trying to figure why I was talking about weather in the first place? Ah yes, walks.

Getty is slowly getting back to her baseline numbers since being sick. Her usual oxygen is around 97-99. She will hit 100, but it won’t stay long. Her usual HR wake is around 120-130’s. Lately Getty’s HR has been a bit higher and so we are carefully watching that. Nothing alarming, just a bit higher since her illness. She is doing great while we are sprinting her off bi-pap. Two to three hours off bi-pap is working for her. Our hope and goal is to get Getty back to being off bi-pap during the day and only using bi-pap for sleeping. But we are going by her rules and she will let us know when she is ready.We are so proud of her recovery.

So lately the weather has been nicer. We have been waiting until later in the evening to take our walks. It is such a joy to be able to resume walks as a family. Since Getty is still a bit unstable, we put her on bi-pap for our walks.

Her medical stroller is simply awesome. It holds all of her necessary items for our journey. In no particular order: Cough Assist, Pulse Oximeter, Bi-pap, Suction machine, and Portable battery. All of which plus the stroller is very heavy to lift up and down a few steps from our front door, so we will be getting a ramp to make that process a little less wearing on our backs. 🙂

It has been a lot of fun watching Getty while we walk. She is very serious and she seems to observe here surroundings very carefully. If we stop the stroller she will do one of two things: Getty will fuss, letting us know to keep moving, or she will give you a non-verbal look of “why the heck did you just stop?” So we have to be very careful when we decide to stop. We have learned in the past that if we stop for a long period of time, she will cry, she will pool secretions, and then she will desat, so needless to say it is a bit more complicated and we choose not to go down that route. 🙂

She seemed to observe all the trees, the cars driving by, animals that walked near her path and then there were times in which she just seemed to be in the moment. So very content being outside and content with life it seemed. How can an almost 16 month old be so soulful, but she is and we are always so in awe of her power.

Our usual loop is around the neighborhood and through the park. It gives Cooper a change to run around with Mark and the park is usually full of people, which is also fun for Getty. Our walks usually last a good hour.

We try to go on walks every night depending on the weather. We have been very lucky that this entire week has been nice enough to go out and not too hot. Last night we walked by some neighbors that we haven’t seen since Getty’s diagnosis. It was nice to see them and to chat. We talked briefly about how Getty was doing and they came down to meet her. Again she was very serious but did give a slight smirk when they showered her sweet compliments. As we were leaving she starting in with all kinds of coos. She was so shy up until that point. It was cute to hear her chatty as we walked away. I am not sure if she wanted to still talk to them or if she was telling us all the things she would have said if not for the shyness or what. But the timing was very cute.

Here are some pictures of one of our walks.

Getty’s loyal steed, Cooper!

Getty’s Big Girl Room

From Kate:

Since Getty’s diagnosis, she has slept by my side in our bed. I didn’t want her anywhere else. It gave me comfort and it also was the best decision to make at the time. Getty is hooked up to a pulse oximeter 24 hours a day, but that in itself is not enough security. Things can still happen even when the alarm has not sounded in certain circumstances. So having her right next to me, getting to snuggle her every night, and hearing her sleep was a huge comfort.

When I was pregnant with Getty, I spent a lot of time designing her nursery. Figuring out the perfect color, the perfect theme, the perfect everything. I think we put her whole room together while I was about 6 months pregnant. I just couldn’t wait to transform our spare bedroom into her new environment. After diagnosis, her room remained the same but now took on another function: supply closet. It housed all of her supplies, diapers, stroller, clothes, crib, changing table, etc. I think I would spend just enough time in it to get what I needed and then I would leave.

I grew to hate that room. I hated how cheery it was , I hated how much time I spent on making it just right, I hated how the crib sat empty only to now become a catch-all for stuff. But you would think that I would be motivated to then change it, but I was paralyzed to do anything to it. It was a double-edged sword. Part of me was still grieving that Getty was not healthy and part of me wanted to give her the room she deserved. Both were canceling themselves out and I did nothing. So many months went by. The sleeping arrangement in our queen bed, from left to right, was Mark, Cooper, me, and Getty, in that order. Cooper, our beloved whippet, had a way of stretching out his lanky limbs and dictating how much room everyone else got, to the point where Mark volunteered to sleep on the couch.

So every night for the past four months, Mark would sleep on the couch, Getty and I would sleep in the bed and then Cooper would split up his night between the two sleeping areas. I think he wanted to make sure each of us got enough time with him. 🙂 Very sweet.

It was not an ideal situation, but it worked. Everyone got the sleep they needed, some a little more bumpy than others. It never even occurred to me that we should maybe change things up. What was the alternative? I am not going in that room.

It is funny what a hospital stay will do to change your mind. Getty has been doing incredible since she has been home from the hospital. She is taking big 2 hour sprints off her bi-pap a few times a day. We are still doing 3 full acute care treatments a day, and it is doing the trick. The vibrating vest is amazing and we are so glad to have that now. It is definitely allowing the junk to get out of her lungs while also shaking her whole body to allow for other things to come out on their own, if you know what I am talking about. We no longer have to give her Miralax. 🙂

I also got the courage to change my attitude about Getty’s nursery. Instead of my own issues with that room, I needed to think what was best for Getty. Mark and I live by that motto with Getty’s care, so why couldn’t I do that about a silly room? Well I finally was able to “go there” and now I am so happy I did because Getty has a new rockin’ big girl room and she loves it.

We pretty much left the existing furniture and artwork, but added a few bookshelves and an awesome new twin bed! We have been saving up for a special kind of bed. Getty has not developed pressure sores, but we knew that they could come at anytime and we wanted to make sure we could combat them as best as possible. She tells me when we are sleeping when she needs to be repositioned. Usually it is in the sound of a slight whimper. That tells me that she needs to try something different. Maybe needs to be on her back or she wants to be on her other side. But she has always been good about telling me. Last night was the first night she slept in her new memory foam bed and she only asked to be repositioned once, instead of the usual 5 times. Now I do not know if it is because of the memory foam, but I can’t help but believe that makes for a much more comfortable slumber.

So I took some pictures of her new room. Now there is a place for her books, a wall for all of her clippies, a place for all of her stuffed animal friends, and a ceiling for her mobiles. Her new big girl room is inviting, it is a place where we all hang out and a place where Getty and mommy still sleep at night together, but now daddy can sleep in a real bed himself. 🙂 And last night Cooper still divided his time between both rooms, I think he likes the memory foam too, he spent a lot more time with the girls last night then with daddy.

I think this room is a good expression of who Getty is. It is cheerful, it is full of life, and it has just the right amount of sophistication  that we have come to love about her. And this mom has definitely learned a good lesson about holding onto things. Nothing is more dear than your loved ones. I disassembled that crib in about ten minutes, and to know I allowed it to hold me captive for over 10 months simply was not right. Live and learn.

Settling In At Home

From Kate:

Getty got discharged yesterday afternoon. Before leaving the hospital we received training on her vest that will now be a part of her daily breathing routine. The training was quick, we thanked the PICU staff who was attending and we were out of there!

On the car ride home, Getty watched a few Dr. Seuss shows and Mark and I talked about how we literally have not been outside for the past two weeks. It was weird driving in a car, it was weird to see traffic, it was weird to be going home. Very excited and nervous at the same time.

Nervous because I think I got used to and started to depend on the fact that if Getty needed any kind of medical help, nurses or doctors were within an arms reach. Now we were bringing her home and we wouldn’t be able to get a daily x-ray, where her lungs going to remain clear? I started to freak out. What if she gets sick again? Will we be in the hospital again for that long or longer? Way too many things jumbling around in my head, my adrenaline was still pumping after spending almost two weeks on high alert. I took a deep breath and instead of continuing this madness, I talked to Getty on the way home. She had been so chatty all morning, we just knew she was ready to get home too. I focused on her the rest of the trip and that seemed to keep my emotions at bay.

Grammy was home waiting for us. The house smelled awesome. She makes the best spaghetti sauce and once we opened the door, I was immediately comforted. The house was clean and we just so happy to be home.

We brought Getty in and took her immediately to our room. We laid her sweet head on her side of the bed and she fell right to sleep. It was like the moment she knew she was back in the safety of our home she too felt that sense of comfort. As we unloaded the van, I could hear her little sounds of snoring coming form the room. It was such a sweet noise.

It has now been a full day since we have been home and Mark and I are feeling very similarly. We are down right pooped. We were just discussing how we think our bodies are just now starting to relax. Both have literally been on such high alert for the past 12 days that we think our organs have also taken a beating. So lots of sleep, water, and food for the next few days to get back our strength.

It was such a treat to sleep next to Getty last night. I have been waiting for what seemed like an eternity to snuggle her. It was nice to know that neither of us had forgotten how to do it, we instantly gave each other some squeezes as we laid next to each other.

Getty’s breathing exercises are down to Q6, every six hours. In the days to follow to we will figure out our new routine. Lots of mail to sort through. Lots of phone calls to return, and lots of thank you cards to send out. Busy week, but we will take this one slow and not rush into anything just quite yet.

Getty’s health is doing great. She didn’t sleep at all this morning. I think she is just so happy to be home. Yet this afternoon’s nap was absolutely taken advantage of. Now we are hanging out watching her beloved Mickey Mouse.

So happy to be home. So incredibly happy to be home. Thank you so much to the wonderful Kaiser doctors, nurses, and RTs who did a wonderful job helping Miss Getty, and thank you to the Kaiser managers and administrators who stood in our corner when we needed you.

Thank you to Grammy that came everyday. Thank you to Takoa, Mama Raney, Stacey, Morgan, Angie, Marlene, and Patti who brought us comfort and good food. 🙂 Thank you all for being so kind and looking out for us. Thank you Jill for fighting for Getty and giving us the ability to care for her again in the hospital. We literally had nothing left to fight with and you came and took care of business and we can’t thank you enough. And thank you to everyone who left such encouraging comments on the blog and fb. Daily comments were so comforting to read.

We are home, we are safe and we are together. Good night.

The Sweet Sound of the Word Discharge

From Kate:

So here we are, it is Friday afternoon and we are now seeing the light at the end of the tunnel. Getty is doing fantastically. Yesterday she completed two successful attempts off bi-pap. For 45 minutes each, Getty was off bi-pap and holding strong. It was so wonderful to see her beautiful face free of a breathing apparatus. She smiled, cooed, and just kind of took everything in.

It was decided Wednesday that for Getty’s night treatment, she would go to Q6, or every 6 hours instead of every 4. That would be a good test to see what her lungs sounded like after the 6 hours. So this morning when the Intensivist listened to her breathing, he was very impressed. He was under the impression that she had already received her morning treatments, and when we told him that we were just about to get started he was even more excited. The nurse, RT, and I just smiled and celebrated. 6 hours without wheezing or crackling coming from her lungs is a huge step in the right direction. I know that giving Getty the full 6 hours in between to sleep has also made a difference as well. This girl sure loves her sleep.

Then the discussion went to “well then let’s get this little lady out of here.” I couldn’t agree more.

The plan is to continue to monitor Getty on her baseline bi-pap settings of 16/4. We will be doing another blood gas test today to see if she is at the right ventilation levels. Then next steps is to see if she is ready to be, dare I say it…….discharged. Oh that felt good to say. 🙂

So if all goes well we may be getting home this weekend. There is one technicality that might have us stay until Monday. Getty will be getting her own vest for her CPT treatments. She has been getting them with each treatment in the hospital and now we will be able to have the same system for home use. We are very excited to have this added element to Getty’s routine. The vest does an amazing job of knocking around all kinds of mucus that might ordinarily stick to her lungs. If we cannot get the needed training from the manufacturer tomorrow morning, we will need to stay in the hospital until Monday when they can do the training then. we should know more very soon.

Getty’s progress has been remarkable. Every day she has shown progress and every day she has fought like the little superhero she is. We are so proud of her and we simply can’t wait until we can bring her home so we can establish Getty’s new routine. We also cannot wait to get home quick, just so we can slow down and get back to being a family without all of the interruptions, the x-rays, the blood tests, and the baby crib. 🙂 Mommy and Getty naps need to resume asap.