Getty Owl Foundation

A Special Day

From Kate:

It seems as though slow and steady has allowed Getty to “win” this race so far. We are going at her pace, we are being guided by her cues, and even though this is a relatively long stay, we know that with every passing day, Getty is getting better.

Since yesterday Getty has been breathing on room air while on bi-pap. This is a big deal on the road to recovery. While on room air she has been able to hold her sats around 94. We did not try Getty off  bi-pap today. We had a really special day today and I think after all of the festivities, she was one tired little owl.

This morning brought the clearest x-ray to date. We couldn’t be more elated with today’s results. Since she is doing so well the doctor has recommended that her bi-pap settings go from 19/4 to 18/4. She is doing great on her new settings.

After her noon breathing treatment Getty got her first bath since being here. The nurse laid out several towels and we all took part in giving her a sponge bath and she loved it! We were joking that she was really going to get used to all of this special care and expect it when we get home. Sounds good to me. 🙂 It was rewarding to wash her arms and hands and upper body. She cooed the entire time.

After a good wash and dry we put on a new diaper and arranged a way to have Getty lay on my lap. After careful lifting of not only her but all of her tubes, cords, and IV, Getty and I were reunited once again.

It has been so hard for me to adore her from the sideline. I touch her all the time and talk to her. I massage her and nibble on her, but there is something so precious about being able to cuddle and it has been killing me internally knowing I had to wait until we got home.

Our nurse was so great about initiating that I get a chance to hold her today. After careful planning and execution, Getty and I got to hang out and physically catch up. It was fantastic to feel her wait on my lap. It was awesome to hold her whole body. It was equally terrific that Mark and I got to share this special time with her today.

I want to thank Angie for coming by today to bring us food and to visit with Getty. She also captured some very special pictures of our time together. Thanks Ang!

Since we adopted Dr. Schroth’s acute care treatments last week, Getty has been getting treatments every 4 hours. Even in the middle of night our little pumpkin has to be awoken so we can clear out her lungs and help make them stronger. As of tonight in collaboration with the doctor, we will only be doing one treatment in the middle of the night. So instead of being woken up twice, Getty will be able to get in a good 6 hours before her next treatment. It is very exciting to get to this point and I know she will appreciate the extended nap.

Here are a few pictures of our special day.

Quick Hospital Update

From Mark:

Things are going much better all around. As of this writing, at 9 p.m. Pacific Time, Getty has been breathing on room air (no oxygen support) for 9 hours with bipap support. Her bipap support settings have been reduced gradually over the past few days from 20/6 to 19/4, which is approaching her baseline of 16/4.

She was off bipap today, on room air, for 35 minutes. I guess the lingo around here is a “sprint” when referring to a test off bipap. Yesterday, she sprinted for 30 minutes on 1 liter of oxygen, so today’s sprint was much better, making us all happy.

We also had a big meeting with the hospital brass regarding Getty’s major desat event, the lack of communication between RT shifts, and the RT manager’s attempt to bar us from providing hands-on care to Getty. We regained control of Getty’s hands-on care a couple of days ago and her treatments are much better as a result. The major points of the whole ordeal are as follows:

• Getty’s care will be improved during this admission as a result of our ability to provide hands-on care;
• Getty’s home care will be improved based upon things we learned surrounding this acute care issue, because we are providing hands-on care in the hospital;
• Getty will get notes in her file to remind Kaiser of her special needs during acute care when she is admitted to PICU in the future;
• One of the nice Kaiser RTs has volunteered to personally do a presentation to the entire Kaiser RT staff to educate them on the differences between standard RT respiratory protocols and SMA respiratory protocols;
• Kaiser will be better prepared for any other SMA family coming into PICU;
• Kaiser committed to us that it will work to improve its collaborative family-centered care in general to avoid this kind of situation in the future with all PICU patients;
• We have been receiving apologies throughout the day from many different Kaiser managers about this entire incident, including an apology from the RT manager who screwed up Getty’s collaborative care in the first place.

We also managed to get some rest. All things considered, it was a good day.

Thank you to all who offered us help with the administrative battle, all who have come to visit, all who have brought us food, all who have done our laundry, Grammy and Papa Mathany for taking care of Cooper and the kitties, all who have offered prayers and well wishes, and all who have sent nice little gifts for Ms. Getty!

We hope to go home in 3 to 5 days.

Sweet Kisses

Happy 4th of July

Nurses Rock & Teeth

From Kate:

Getty’s recovery is continuing to move in a positive direction. Her morning x-ray showed far more clarity than in past x-rays. After Getty’s afternoon treatment she was tested off bi-pap. She did an amazing job and was able to hold her sats for about three minutes. We are so proud of her progress and we know that with time, Getty will just continue to get better.

When Getty’s symptoms were first present was last Friday. Her secretions were thicker and I chalked that up to teething. Now I know what teething looks like. The effects of teething is massive amounts of watery secretions. All day today Getty’s mouth has been a reservoir. What a good lesson to learn, so when there is a next time I will be able to act quicker if Getty is getting sick and take preventative measures at home to knock out the mucus in her lungs.

Getty’s teeth have historically not been the most motivated to emerge. It seems as though her two front teeth have been swollen for the past few months causing a lot of discomfort. But guess what we saw today??????? Those two front teeth have almost emerged along with a bottom tooth. They are ALL so cute and Getty is starting to become a little lady right in front of our eyes.

We have had the pleasure of working with the PICU nurses for the past week. Most of them also provided care for Getty back in November when she got her g-tube & Nissen surgery. They are ALL amazing individuals who clearly have a passion for children and a love of their craft. Mark and I have been so impressed by their love for Getty and their thoroughness of care. Their shifts end up being long enough to assist us with three of Getty’s treatments and it has been a pleasure working with each and every one of them. We were joking tonight about how when a nurse tells us they will be leaving for the day or night Mark and I get sad because it is like a friend leaving. And then when they say they will see Getty and us the next day we get all giddy to know that they will bring even more happiness to our little girl. We enjoy getting to know them and to share stories about parenting and just life in general. They work so hard and take on so many responsibilities that I would assume at the end of a workday they are all very exhausted. But you wouldn’t know it by their professionalism and passion to care for kids. I am bias because I know they just adore Getty. I love listening to them talk to her and when she responds with a sweet coo, it is like putting her seal of approval on a nurse. It is so cute.

So tomorrow is another day. Getty’s oxygen levels are becoming a lot more stable than in days past. They will continue to ween her off oxygen and will try again to see how long she can go without bi-pap. No idea and no hurry on discharge.

Happy 4th of July to everyone. If you participate, could you light a firework for Getty? Thank you.

Exhausted and Thankful

From Kate:

Before I pass out of exhaustion, I wanted to update on where we are at in the Kaiser drama. As of 4pm today, Mark and I are allowed to suction, use the cough assist, and complete Getty’s treatment. We will be able to continue to give her the consistent care she deserves throughout our stay. We had an absolute angel come see us today who helped facilitate for us and to advocate for us. Jill, I am not sure how to thank you. I hope you don’t mind that I am thanking you in front of many people, but you need to be recognized for your willingness to fight for us. Bless you my friend and thank you.

Being in a hospital for so many days and then on top of that administering Getty’s care around the clock with treatments every 4 hours and then to be told that you can no longer care for Getty. Well I will be honest I seriously think I have aged about twenty years. I would love to say that I am fatigued, but that would be putting it lightly. You know when you get so tired that if you stopped you would just faint. Yep, that is how I would describe it. So as I write Mark is going on 3 hours into a nap. After he wakes and is up an at ‘um, it is my turn next.

Getty is doing better every day. Her lungs are slowly doing better and better. I know her treatments are making a difference and in time we will be going home, no question about it. Not sure when and I don’t really care. We are going at her pace. We tried Getty off bi-pap today and she held her sats for about two minutes. We were so proud of her. We try again tomorrow and then the next day and then the next. She is certainly in better spirits. I got a couple of smiles. She flirted with one of the RTs. She enjoyed watching Yo Gabba Gabba. And i think overall she is just happy to feel good enough to enjoy our company. There were a few days early on that I think cooing to us hurt and that broke my heart. But she was certainly chatty today.