Welcome to Paisley Long's page!
Thank you for visiting our fierce heart warriors page. For those of you who don't know Paisley was born 09/25/18 with a rare heart defect called "Scimitar Syndrome" (which is characterized by anomalous venous return from the right lung (to the systemic venous drainage, rather than directly to the left atrium) This anomalous pulmonary venous return can be either partial or total). This is accompanied with a a small right lung and in Paisley's case her right lung is very hypoplastic only accounting for 2% of blood flow. She also suffers from sever pulmonary hypertension (high pressures in her left lung cause her right ventricle to work to hard and start to fail. She is in a long term heart failure state. She spent nearly 7 months of her first year of life impatient with several hospital stays.
Paisley was also born with several other diagnosis'. She has bilateral colobomas (her eyes never fully developed), she had some fused ribs and vertebrate. Bronchomalacia on her left side causing her to be trach and vent dependent. She received her Tracheostomy when she was 5 months old due to aspiration, tachypnea, having trouble gaining weight.
Paisley has had multiple cardiac caths and on 11/05/2019 where a stent was placed into her left pulmonary artery in hopes to help her lung pressures. The stent did help and slightly lower her pressures and thing were going good for a while after that.
Just within the last few months Paisley was experiencing worsening symptoms. She was have oxygen desaturations, higher heart rates, not tolerating feeds, vomiting and restless. She was started on oxygen at night and changed her feeds to something more broken down for her to tolerate. Paisley had a GJ tube. She hasn't eaten in her stomach since she was 5 months old, she is fed into her intestines (jejunum) and takes very little by mouth. She is doing much better with wanting to try more and taking sips of water from a sippy cup.
She just went in for another cath on 8/14/2020 and they ballooned her stent and also tried to balloon some of her surroundings vessels to see if the overall pressures will go down but that wasn't very successful. Overall her pressures are about the same as where they were last year and they are starting to run out of options on what to try next. Her team is having conversations on surgeries or other procedures that could help. The longer we wait the more damage to her heart and ultimately her pulmonary hypertension will fail her heart. Transplants are a possible option in the future but she would require a Heart/Lung transplant.
As long as Paisley continues to thrive a home and be the happiest little girl we will always advocate and fight for her. She is walking and learning to talk above her trach while vented, learning sign language and loves her family. We are very hopeful with more funding for research they will be more options for when we need them to help give our girl the longest life possible.
Paisley more recently has been coming off the vent and is off all waking hours and doing great! She is currently weaning down on the vent at night and is such a rockstar! We love watching her grow and get stronger everyday! She is continuing to prove everyone wrong!
Thank you for visiting her fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me.
In the last year Paisley has successfully come off the vent and has been fully capped, while working towards decannulation! This is so exciting for her and we cannot wait to take that trach out forever even though its been her life line for so many years now. We are still working on keeping her heart and lung pressures down with yearly cath procedures. She continues to amaze us daily and we appreciate all the love and support for our amazing warrior!
Since being off the vent for 8 months and doing really well we are reminded how quick thing can change when you have a life threating disease. Paisley caught "The Common Cold" something you and I just brush off and think it no big deal, that put her in the ICU for 4 days and back on a vent in a matter of 12 hours...
With her only having one good lung when she gets even the slightest bit sick it takes her down really fast. She was able to recover and get back to capping her trach within 5 days but we are in no hurry to decannulate at this time. We want to make sure she has all the support she can get through flu and rsv season. A friendly reminder to still wear your mask if you are sick and make sure you and your kids are washing your hands. Helping stop spread germs can save kids like Paisley from being admitted and also keep them home and healthy.
At this time she is scheduled for a capped sleep study the end of this month and will see what her airway is showing and also see how her ENT feels about decannulation in the spring!
Thank you for all your support !!!
Please help us to fund CHD research by making a donation to her personal fundraising page. Together we can make a life-saving difference!
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