Getty Owl Foundation

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.

Patient Advocacy Help!

From Kate:

Getty continues to do well. We need someone’s help. We have just been told that we are not allowed to give any kind of care to Getty anymore. We cannot suction, we cannot do any of her treatments and I need to know if we have any rights as a family to give her care. No one here knows the nuances of our child and because of two instances from the RT’s here, she might not be here if we had not intervened. Do we have any rights to take care of Getty?????? Please help if you can. Email us at hoot@gettyowl.org . We are in the state of California and we need to know what our rights are.

Slow and Steady

From Kate:

Since being admitted, the mantra for Getty has been slow and steady. When we abruptly try something, Getty’s recovery seems to take a step back. I know how important routine is for Getty and once you start changing her environment she can get a little overwhelmed. Don’t get me wrong, this girl likes adventure, but the fun kind. Take Norman the gull. He didn’t fly in her face and scare her, he just calmly flew near her and hung out. Getty’s closest friends come over to talk to her in a calm voice and she reciprocates with a smile or a soft coo. She doesn’t like abrupt situations, which is not ideal staying several days in a hospital.

A hospital can be a jolt to anyone’s system, let alone a child’s. The alarms, the beeping, strangers coming in and out of the room and the relentless need to poke, monitor and assess Getty has really taken a toll on her. We have been very worried that she hasn’t been getting the rest she needed to bounce back from this sickness. So we found a solution. Operation “Get the Hell Out” commenced yesterday. 🙂

It is our nice way of saying to the staff that she needs absolute silence and rest in between breathing treatments. So the RT and the nurses bundle their care at the same time, which leaves Getty with a good two and half hours of rest. And she uses every second of it. It also gives Mark and I the chance to get in a little nap and have the reassurance that no one will bother any of us.

The staff has been very respectful of our wishes so far and we certainly appreciate it.

So as I write this Mark is passed out on a pull out bed. I have no idea how he is sleeping the way he is only to suggest that pure exhaustion has left him with his body all contorted, yet he is sleeping like a baby. 🙂 Getty is also sound asleep and getting the rest she needs for the next demanding treatment at 8pm.

Sure, we would love to go home right now. It would be amazing to be able to snuggle with her in our bed. I want her to be back in a familiar and safe environment. I know it will take time to get her where she needs to be in order to continue to thrive, but she will get there slow and steady.

I want to thank everyone for your prayers and well wishes. I think there is such power when many people are sending healing wishes. Mark and I read and re-read the comments. After Getty’s health scare, I needed to ground myself with positive words. I turned to comments made by so many of you to help me relax after such an insane few hours yesterday morning. So I thank you all so much. Knowing that people are thinking of Getty touches all of us.

Hospital Update 2 – Getting HORRIBLY Worse Before it Gets Better

From Mark:

Up until now, the Kaiser PICU staff has been great. Then this chump respiratory therapist (“RT”) came into the picture.

Kate and I have been great with all the RTs and nurses during our stay, but there was something odd about this guy. We couldn’t put our finger on it, but something was just not right with this guy. We each felt it in our bones the minute he walked in the door.

Kate went to bed in the parent bedroom, and I did Getty’s midnight respiratory treatment with this RT. I felt nervous the whole time, unlike the nice level of comfort I have had with all the other RTs helping with Getty’s care.

Kate and I take the lead in the treatments because we know our daughter. The RTs follow our lead during Getty’s treatments. Given Getty’s fragility in certain respects, if it goes any other way, we know Getty could be in deep trouble very fast.

We got through the midnight treatment just fine as I lead the treatment and coached the RT. I said good night to the RT with a verbal understanding he would wake me up at 4 a.m. for Getty’s next treatment. I went to sleep in the room with Getty.

The next thing I know, I hear an alarm. The RT failed to wake me up before initiating her 4 a.m. treatment, and he caused her to desat to a blood oxygen level of ZERO. That essentially means Getty cannot breathe at all.

Kate and I knew of this risk, and that is why we always take the lead with her respiratory treatments and we never allow an RT to treat her without our full involvement. We know our daughter and we know how to prevent this very situation because we have had to rescue Getty from this very thing ourselves at home on multiple occasions, although in our hands, her sats have never been all the way down to zero.

We worked Getty back up to normal numbers. The RT explained how he started Getty’s treatments without me. As we started to get into it, Getty’s numbers dropped again. The nurse went to the bedroom to get Kate, and we worked to stabilize Getty. Kate, the nurse, and I literally saved her life from this buffoon RT.

Once Getty was stable, we chewed the RT a new one. We chewed out his supervisor. The head honchos came in later and wanted our side of the story. Apparently, the RT told them he didn’t know he was supposed to wake me up before starting the treatment. I explained that there is no way in hell we would ever allow anyone to treat Getty without our involvement. I also reiterated that I had specifically requested the RT wake me for Getty’s 4 a.m. treatment, and this is the exact reason I asked him to wake me up for the treatment and not half way through the treatment. We don’t know what happened to that RT, but they assured us he would not be back in our room.

When the adrenaline wore off, it was back to business for us. We have a daughter to fix.

I asked our intensivist to call Dr. Mary Schroth at university of Wisconsin, the leading SMA pulmonologist in the US. He generously called her and discussed Getty’s care. Dr. Schroth recommended changing up Getty’s care and treatments. Our intensivist modified his orders according to the input from Dr. Schroth. Thank you, Dr. Schroth!

Our regular pulmonologist came in to visit a little later. When he arrived, he saw that Getty’s treatments had changed. The conversation went something like this:

Pulmo: [befuddled] What are you doing?!

RT: We changed Getty’s treatments.

Pulmo: [defiantly] On whose orders?!

Me: Dr. Schroth.

Pulmo: [defeated] … oh.

🙂

The rest of the day went pretty well, and Getty spent quite a bit of time completely weened off oxygen. She has since been intermittently delivered low oxygen but she’s definitely better than she was a couple of days ago. We tried her completely off bipap, but she could only go 8 minutes.

The rest of the treatments went well and according to Dr. Schroth’s protocols. Today’s x-rays still show problems but improvement.

Getty gets 1.5 hours of full-blown respiratory treatments every 4 hours, as follows:

• 4 sets of 5 coughs on the CoughAssist machine with oral and nasal suctioning after each set
• 15 minutes in a vibrating vest that inflates around her and shakes all the crap around in her lungs
• 4 more sets of 5 coughs with suction
• 15 minutes laying in a decline (head-down) position to allow all the crap in her lungs to drain toward her throat (postural drainage), with medicated nebulizers as needed
• 4 more sets of 5 coughs with suction to remove all the junk that was shaken loose and drained toward her throat

After the 1.5 hour treatment is complete, she gets to sleep for 2.5 hours. Then we wake her up and do it all over again. She likes watching Mickey Mouse during her treatments.

We are glad to be rid of that RT, and he rest of the Kaiser PICU medical team is wonderful. The RT supervisors changed the orders so we get the same RTs every time. No new faces. Our regular daytime RT is wonderful, thoughtful, knowledgeable, and takes very good care of Getty. We’re glad the nightmare is over, Getty is in capable hands, and is on the mend.