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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.


Working This Out

From Kate:

It has been an intense 12 hours to say the least. As I write, Mark is orchestrating Getty’s care from the foot of her crib as others give her care. You know as if this diagnosis is not devastating enough and if fighting for her care isn’t horrible enough, but now our healthcare provider is telling us that we can’t use the machines they trained us on for the care of our daughter. I can’t tell you how exhausting this is for Mark and I, it is simply insane.

But let me say this before I go into what we learned and what we will be doing tomorrow. Getty is doing awesome. Because of the consistent care she has been getting from her parents and her nurses she on the road to recovery. Because of the gracious advice from Dr. Schroth, Getty is getting the treatments she needs to make a full recovery.

What I think Mark and I have come up against is a system that does not understand specialized care. Getty’s care is so incredibly nuanced. A slight turn of the head could spell disaster. Not enough suction in certain places if unnoticed can also compromise her health. Positioning her needs to be delicate and supportive. She coughs a certain way, her gurgles mean different things, her grunts and coos can mean I am hurting while that same coo can mean I need a break or hello.

This system has unfortunately lumped my child in with every other child and assumed she fit the mold. Well here’s the deal, she doesn’t and she deserves to be supported by a system that will HELP HER THRIVE.

So tomorrow we will be meeting with a few people who will be helping us figure out next steps. We have been allowed to suction and use cough assist on Getty intermittently between  treatments, with OUR equipment. Oh didn’t I tell you……Kaiser doesn’t have a bi-pap machine nor a cough assist machine for her upon admittance. Since Monday morning they have continued to depend on ours. The same one’s we are not allowed to use.

I am sick that I even had to waste my time writing this post. It is disgusting that a family has to even be put in this situation. More updates to come.

I want to thank everyone who called and emailed us and left comments. I was talking to absolute strangers that just wanted to help. I am so humbled by how much you care for our Getty. I was nervous soliciting help, but oh my goodness the feedback we received was so helpful and you led us in the right direction. Thank you for helping us advocate. It definitely takes a village.