Believe in Lily

Believe in Lily This page was created to keep everyone updated on Lily's medical journey. We are about to go down a bumpy road. I will update here.

02/07/2025

Lily's cardioMeMes device has been a big pain in the rear. When doing readings, ALL electronics must be off. Well she is a teenager and has LED lights, a surround sound with her TV, and many other electronics in her room. Well lately all her readings have been showing that her pressures are negative, which you can't have negative numbers in your pulmonary artery, as that would mean you are pulling blood away from the heart, instead of circulating it like normal. We say that Lily loves to throw curve balls, but this isn't one, it thankfully is user error. We'll take the user error over something being wrong EVERYTIME!

Modern technologies have its shortcomings but we are thankful for the device nonetheless. We are awaiting the call from clinic to let us know how her reading looked today. A few weeks back her numbers were high, so here is hoping they are in the normal range!

01/31/2025

Lily’s CardioMeMes device is working. I just got the call her pressure is up in her artery and we may be adjusting her diuretics and depending on how she responds will depend on what they chose to do next. 

01/03/2025

After being released from Rady’s, Lily was given some new meds. Well she just ran out and when calling Banner, they wouldn’t refill it, it had to come from P*P, which I called and said they’d put in for the doctor to call us. I called over to PCH and asked for help with this as she only has 2 left. Banner called back and said the only way to refil them is to bring her in for an echo and a follow up to see if there has been any change since her last one done. Banner is afraid of her, they have never had such a medically complex case as they always refer them out. Seeing we have them collaborating with PCH and Rady’s, I have trust they will do their best and let us know when it is something they can’t do.

So we have an appointment tomorrow since I never heard back from PCH. This is such a ridiculous game that we are having to play!

11/26/2024

Lily is home and has been back to school since Monday. I am only having her go half days as of right now, she is still recovering but is in need of still being in the classroom.

As for medical, well it is in an upheaval as we are trying to get into Banner Cardiology but need PCH to send her records. She is still being followed by the Coumadin Clinic at PCH since it is just me texting her numbers in and they tell me to go up or down.

Her post Cath Check is scheduled for December 24th but has a stress test for December 2nd, all being done at Banner for the time being. I think by the time everything gets worked out with insurance, we will have made new friends from Banner's Cardiac Clinic.

11/20/2024

It is Cath day! Sadly I am a bit frustrated over the decision but I am trying to be at peace with it.
We are looking at a ballooning of her arch and a possible secondary stent; it will be decided once they are in there. My frustration is the fact that they will be checking her pressures but won't place the CardioMeMs, even after checking pressures. If it is decided that she does in fact need it, they will have to take her in for a secondary cath to place it. Hence the frustration!!! Why would we put her under twice, intubate her when we know she doesn't handle it well, and run the risk of her right lung collapse.
Those who know Lily and have been following along with us for years, know that almost every time she is extubated a lung collapses. With that being said, it make sense to just place the device at the same time, yet I am just mom and not a doctor, so I must default and trust they know best at times. If I don't have faith and trust in the team, then why the hell did I just go through sleep deprivation? They are the team I trust, so trust I shall, my voice has been heard and I respect the decision and path in front of us.
Cath is scheduled for 10:30 PST so I will update again at that time.

11/15/2024

Lily's BP meds have been stopped, we are hoping that helps raise her BP. We are here another night, while still trying to work on getting her transferred to PCH for a cath and heart transplant team evaluation. It is aggravating that the only hospital in state that can handle her is denying her. I reached out to Rady's, they are aware that she needs a Cath and to have the CardioMeMs, which is a device that is placed into the pulmonary arteries to monitor the pressure in her heart better. Her heart is squeezing but not relaxing she has Heart Failure with Preserved Ejection Fraction which means spontaneous or provokable increased left ventricular filling pressures. She is currently doing crafts, one of her favorite things to do in the hospital, along with watching Wall-E (we love this movie). We also switched rooms since they are doing construction on the floor, her old room will be worked on tomorrow, I have to say, being able to set our thermostat is a beautiful thing, especially when you have a kid that overheats on a constant.

11/15/2024

We have the charge nurse today. When talking to Dr.R over at PCH he said they needed the most skilled nurse for her since she is a complex case.....hence the charge nurse.
Lilys bp dropped low last night into this morning, we had 63/55 then 77/60, rinse wash and repeat. Those are the moments she feels like she's going to pass out and I don't doubt it.
She has been a bundle of emotions and we have had a lot of tears and "Mom, I just want to go home." I'm with you kid, but sadly until we get your heart situated we are here. Rounds have begun so I will join once they get to our room and see what they have planned out for her today.

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Maricopa, AZ
85138

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