Getty Owl Foundation

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.

Working This Out 2 – A Few More Details

From Mark:

This all began out of the blue today when the RT supervisor came in and told us we can’t do hands on care. The reasons offered are (1) liability; and (2) I am a lawyer and I intimidate the staff by taking control of her care. What utter crap! I guess all concerned lawyer parents at Kaiser can’t get quality care because we intimidate medical PROFESSIONALS.

This RT supervisor was standing there when I gave Getty a suction. He tried to prove his case that his staff was better than me by telling me I was suctioning Getty incorrectly. I quickly reminded him that it was HIS RT STAFF who taught me how to suction. So if I’m doing it wrong, it doesn’t speak very highly of his RTs. I also reminded him that it was his RT that caused Getty to desat the other day, not me. It was another one of his RTs who come into the room this morning and almost caused another dump by turning Getty’s head without suctioning first. We saw what he was about to do and stopped him.

He gave me his phone number and generously asked me to call him, even at 2 a.m., if I had any problem. I think I want to call him at 2 a.m. each day over this holiday weekend just for some giggles because I’m up anyway.

He also said he needs to swap out all of our home equipment with “hospital grade” equipment that’s been inspected and calibrated according to standards. Oh … you mean this home equipment we’ve been using in the PICU for a week already isn’t good enough? Oh, and Kaiser doesn’t even have a cough assist machine of its own to swap out with our home equipment. They have to order one, and it’s a holiday weekend. By the time it arrives, Getty may be discharged.

Kaiser did bring in its own Trilogy bipap. However, they don’t have a humidifier, so the Kaiser bipap is just sitting in the corner while they order a humidifier, too. Maybe it will come in the same box as the new cough assist.

Anyway, we figured out how to be hands on for part of Getty’s treatments. The doc’s order says that the staff has to do the “acute care” treatment, but we parents can do our own “intermittent care” cough or suction in between the acute care treatments. The acute care treatments are every 4 hours and begin with 4 sets of 5 coughs on the cough assist machine followed by the percussive vest.

So, a couple of minutes before the scheduled acute care treatment begins, Kate and I do our own “intermittent” cough and suction with 4 sets of 5 coughs. Then the staff can begin their acute care treatment immediately after our intermittent cough and suction is done, but they can skip the first 4 sets of 5 “acute care” coughs and go straight to the vest because Kate and I just gave Getty 4 sets of 5 “intermittent care” coughs. This works for now because we know by the time the staff gets their hands on Getty, she will already be cleared of any secretions that might cause a saliva dump into her throat.