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Hello friends and family of the Newton’s,
I never thought my family or I would ever be writing something like this, let alone living it. I am writing this with a heavy heart as Ryan, Kaelynn, Madryn and their 3 other children (Cleimint age 6, Ailis age 4, and Saoirse age 2) are learning to adjust to the news that their lives are changing in ways none of us imagined.
On Friday Afternoon (3/22), baby Madryn was having trouble breathing, so much so that Kaelynn was very concerned and called an ambulance who took them to Long Beach Hospital. Long Beach ran some tests, found that she had Rhinovirus, an elevated heart rate, and elevated blood sugar levels. They decided from there to transfer her up to UCLA where they were admitted to the hospital PICU, on the day she turned 7 months.
On Saturday (3/23), it was found through an ultrasound that her heart muscle function was low, and although she was responding well to medication, she needed to stay in the hospital for additional tests and monitoring until her virus left her system and her heart recovered.
On Sunday (3/24), the doctors were still not fully aware of what was wrong with Madryn, but it was thought that she may have a congenital heart condition and be on meds the rest of her life or potentially need a heart transplant. More tests needed to be run, as well as additional time for monitoring.
At this point, the hope was that after the virus ran through her system, her heart would use the help of the medication to recover and she would eventually be able to go home.
On Monday (3/25), a procedure was done to put a PICC line into her thigh to make it easier to draw labs and give medication. We were told that a PICC line is only placed if it is unlikely that the child will be leaving the hospital anytime soon. No time frame was given, but from what we gathered, Madryn was going to be in the hospital for quite some time.
We were also given the news that Madryn had a condition called Left Ventricular Non-Compaction Cardiomyopathy (LVNC) that has caused Dilated cardiomyopathy. What we were told by the doctors is that part of her heart did not compact its tissue into muscle, and due to this part of her left ventricle thinned and grew way past its normal size to compensate for the lack of muscle. This has caused issues with backflow of blood in that ventricle, and it makes it hard for her heart to pump blood to the rest of her body effectively. (I will include articles at the end if you want to read more on these conditions)
At this point, her resting heart rate hovers between 180 and 220. A normal heart rate for someone her age is anywhere from 90-160 depending on their activity levels.
On Tuesday (3/26), we were given the news that although the virus seems to be significantly improving, her heart has made no positive change. We were told at this time that Madryn would need continuous IV heart medication for the rest of her life, or until they can find her a new heart. We were hopeful that she would be able to slowly transition to oral medications, but as of now the doctors say that it is highly unlikely.
On Wednesday (3/27), the doctors found that her heart was getting slightly worse and so her medications were increased. As of now, she is tolerating them well.
Madryn is now in the process of getting approved for a heart transplant and we have been told that she will not be leaving the PICU until she gets one.
Through all of this, Madryn has been a little trooper. She is eating well, and as she is recovering from her virus, she is now playing more each day and has gotten her smile back. She loves to play with her toys and watch cocomelon when she is not resting, and more than anything she loves being held and comforted.
Kaelynn and Ryan have been managing as best as they can with these circumstances. Kaelynn is unable to leave the PICU except for an occasional walk or shower. Ryan is commuting back and forth from work (in Huntington Beach), home (in Long Beach), and the hospital (at UCLA). They are working together to support each other and their children as they figure out how to adjust to this new normal.
Cleimint, Ailis, and Saoirse are currently living their best lives at their BopBop (grandpa) and GaGaw’s (grandma) farm while they are on their spring break. They miss their parents and “their baby” (what they call Madryn), but are unable to see them until they also recover from the virus that Madryn got. For them, it has been a minor illness.
The extended family, Titi’s, GaGaw’s, BopBop’s, and other loved ones, have been taking turns supporting Kaelynn and Ryan at the hospital and with the other kiddos as much as possible.
First and foremost, Ryan and Kaelynn want to thank everyone for all of the prayers, kind messages, and offers to help as they have been dealing with everything. It means so much more to them than you know. We continue to ask that you keep Madryn, Ryan, Kaelynn, Cleimint, Ailis, and Saoirse in your thoughts, prayers, and intentions as they adjust to their new life circumstances. Specifically, we ask for prayers for healing over Madryn, for her to be as comfortable as possible, and for her to continue to grow. We also ask for prayer for Kaelynn and Ryan to feel support as Kaelynn remains at the hospital and Ryan commutes back and forth, for rest and comfort for them, and for them to be able to spend as much time as they can with their whole family. Please also be praying for the other kiddos. They miss their parents. Pray for comfort for them, and for them to feel loved and cared for by their parents and all of the family that is/ will be helping them with this transition. Although they are having so much fun on their spring break at their grandparents, Cleimint and Ailis will need to return to school on Monday 4/8. Please be praying for their family as we all try to find out logistically how to care for the kids from Long Beach, and Kaelynn and Madryn from UCLA.
A lot of you have reached out and asked how you can help. I have created this GoFundMe as a way to support Ryan and Kaelynn through all of this. Kaelynn is only given 1 free meal voucher a day at the hospital. She is also unable to leave the baby without another family member being present. Ryan is commuting from work and home to the hospital almost every day (which is over an hour drive). Other family members are also commuting from far to come and help in any way that they can. Parking at the hospital is $15/day and $25/overnight. Thankfully, they are right in the hub of amazing food, some of their favorite coffee places, and great grocery stores. But sustaining eating out every day and trying to store whatever food we can into two small coolers is adding up. My hope is that this fund will help them to not have to worry about affording to eat or commute while they are in the hospital indefinitely, as well as any other costs that come up as they need new things for their transition.
Right now, they are on government assisted insurance so they do not have an estimate on how much a heart transplant is going to cost, let alone the hospital stay, continuous IV medication, and eventual anti-rejection medication. From the little research I’ve done, it is estimated that a heart transplant alone in the U.S is upwards of 1 million dollars. Because of this, and because we aren’t fully sure of the cost of everything yet, I have set a tentative goal, but will update you all as we find out more.
If anyone wants to send cards, please feel free to send them to:
43200 Vista Bonita Way, Temecula CA 92590
We so appreciate people reaching out to see how they can help and wanting updates on what is going on. As we continue to adjust to everything, I will be posting here giving everyone updates. If you want email updates, feel free to reach out on here
and I will send you the updates I post here. Thank you for taking the time to show support for Madryn, Ryan, Kaelynn, and the kiddos.
With love,
Titi Num (Autumn Newton)
Info on Dilated Cardiomyopathy
Info on Left Ventricular Non-compaction Cardiomyopathy
https://www.cincinnatichildrens.org/service/c/cardiomyopathy/types/left-ventricular-non-compaction-cardiomyopathy
Organizer and beneficiary
Autumn Newton
Organizer
Temecula, CA
Ryan Newton
Beneficiary