Hello everyone! My name is Jade and I am the mother of a now 5 month old Heterotaxy, Pediatric Asplenia, HIE, and Multiple Complex Heart Disorders patient named Waylon Chaos Hartman who from the time he was born until he is between 2 and 4 years old will require 3 open heart surgeries with the last 2 being on the more complicated and risky side. Due to Waylon's medical needs I am currently unable to return to work as he needs constant care and watching. I have received a letter from his cardiology doctor stating he does require a in home, home health aid for 10 hours a day, 5 days a week where he has named me to be Waylon's aid but I am facing difficulties finding a Home Health Agencies that take our Medicaid Insurance (Geisinger Health Plan Family) and accepts pediatric patients under their company. So, until then I am living off of $644 a month which is Waylon's disability check that pays for any of his medical or caretaking needs and also gas to and from all his appointments and anything else I may need for him.

Some Backstory: I was induced at the Hospital of the University of Pennsylvania (HUP) on October 1st and at 8:06am on October 2nd 2024, I delivered Waylon via a complicated c-section & tubal ligation combination procedure where I had to be put under for them to deliver Waylon and then immediately transfer him via the tunnels to the Children's Hospital of Philadelphia (CHOP) to the CICU where they had to wet blanket him and place him on monitors and oxygen to keep him stabilized. Due to having to be induced Waylon had suffered from a small brain bleed and Hypoxic-Ischemic Encephalopathy (HIE) that had to be monitored...after about a week they had removed him from the wet blanket and reduced his oxygen but at 2 weeks old on October 16th 2024 he had to undergo his first open heart surgery where they cracked his breast bone to be able to place a Pulmonary band around his Pulmonary Artery to slow the blood flow to his lungs and slow his breathing down. During my delivery both he and I had cardiac issues and I had lost 2.7 liters of blood that required me having to have 4 blood transfusions but after a week inpatient at HUP I was finally released to remain at the Ronald McDonald House in Philadelphia (RMHP) until we could take our little boy home. During our stay there we had to reach out for help with food, clothing, hygiene products, and transportation funds due to neither of us really being prepared to stay in philly for a month and 10 days total.

Currently: Waylon is 5 months old and is developing very well but still requires his feeding tube in his nose into his stomach for all of his feeds and medications to be given to him. He is a little over 2 foot in length and a little over 14lbs now and is monitored closely by Cardiology with CHOP, Geisinger Pediatricians, Geisinger Gastroenterology, and soon Geisingers Pediatric Feed Team. Monthly we attend at least 5 or more appointments for just his own care and about 4 appointments of my own. I currently live with my parents but since I am 33 years old i do provide them with rent money for letting us live with them. I pay for all of the gas that our trips to Philadelphia, Allentown, Pottsville, and Danville requires for my father to drive me to and from Waylons appointments and then mainly to Pottsville for mine. I am also trying to save money for Waylons future, pay for a life insurance policy for him just incase something horrible were to happen and I needed to be able to pay for a funeral (It's not fun to have to even think about such a thing for your baby), some of his medications that were being paid by his insurance I have had to pay out of pocket to have refilled early due to the doctors adjusting his meds in the middle of a medication not due for refill, and any supplies for his hygiene or toys or activity items that help him reach his milestones I all have bought to this point. When I first had him I opened a GoFundMe and had a little bit of help but over the next month or 2 I will be heading back to Philadelphia for his second open heart surgery that I was informed he would need between 4 and 6 months and I am beyond grateful that it is closer to his 6 months milestone than the 4 months one but it is becoming stressful and nerve-wracking for me as I know I will be head back to the RMHP for at least a 2 week to another month and 2 weeks stay in Philadelphia but this time it being solely just myself and my little man since his father is currently in jail at SCP. I'm not one to really like to ask for help but I know I will need and could use all the help I can get so let me explain to you about his next procedure which is called the Bidirectional Glenn Procedure.

The bidirectional Glenn procedure is a surgical intervention used to palliate (improve symptoms) in patients with congenital heart defects that result in a single functioning ventricle.

Purpose:

• To improve blood flow to the lungs and reduce the workload on the single ventricle.
• To prepare the patient for a future Fontan procedure, which is a definitive surgical repair for these conditions.

Procedure:

• The superior vena cava (SVC), the large vein that carries blood from the upper body to the heart, is disconnected from the right atrium.
• The SVC is then connected to the right pulmonary artery, allowing blood from the upper body to flow directly to the lungs.
• The inferior vena cava (IVC), the large vein that carries blood from the lower body to the heart, is also disconnected from the right atrium.
• The IVC is then connected to the left pulmonary artery, allowing blood from the lower body to flow directly to the lungs.

Benefits:

• Improves oxygenation by sending blood directly to the lungs.
• Reduces pressure on the single ventricle.
• Provides a temporary solution until the Fontan procedure can be performed.

Risks:

• Infection, Bleeding, Stroke, and Pulmonary hypertension (high blood pressure in the lungs).

Candidates:

The bidirectional Glenn procedure is typically performed in infants or young children with conditions such as:

hypoplastic left heart syndrome, tricuspid atresia, and double outlet right ventricle.

Follow-up Care:

After the bidirectional Glenn procedure, patients will need regular follow-up care to monitor their heart function and blood pressure. They may also need additional surgeries, such as the Fontan procedure, as they grow older.



So as I journey down to Philly to another one of our procedure adventures for our little Biggie Boy I ask you all to keep both him and I and even his father who probably will not be able to go with us in your prayers.

If you can donate anything to this fundraiser, the money will be used for:

• lodging expenses at RMHP they ask us to donate $25/night if we can and I try to at least pay for some of our nights because it's a wonderful place for a good cause
• Any transportation expenses to and from the hospital and the RMHP or to my doctors appointments to keep up with my drug and alcohol therapy and mental health therapy while I am away down there
• Food and Drinks while at the Hospital and while at the RMHP as they provide sandwiches and one hot meal at night
• Any prescription costs I may need to cover
• Any emergency costs I may run into
• Gas money and transportation to Philly and then back home when he is discharged
• Diapers, Wipes, etc that is needed while we are staying down there
• Gas money to be able to return back to the skook to visit my daughter at least once a week or once every 2 weeks or bring her down to me and then back home
• Any hygiene product I may need while down there (shampoo, conditioner, pads/tampons, body wash, etc.)
• Ability to pay my monthly bills (cellphone, life insurance, rent to my parents, credit card, fines/restitution, etc.)
• Money to place on the phone to be able to keep his dad updated and even get a video visit in here and there for him to see his dad and his dad to see him

These are all just costs I know I have ran into while our first stay down there was happening, but one also just never knows. The money donated will remain on this GoFundMe page up until maybe a week before his scheduled surgery date and then I will withdraw and most like close the fundraiser again as I did the last one.

Thank you so much for checking up on us and all your prayers and help. Also, if anyone has any Home Health Agencies they could recommend to me please contact me or comment.

ANY REMAINING FUNDS WILL BE SPLIT AND PLACED INTO MY EMERGENCY FUND SAVINGS AND WAYLONS FUTURE SAVINGS.

Waylon’s Journey Update

In February, during a cardiology appointment, doctors discovered a blood clot in Waylon’s pulmonary artery. Because of this, he was admitted to the hospital for four days so they could start him on blood thinner injections. He has continued those shots every day since then.

Today, we will be returning to cardiology for another appointment. Over the past weeks, we’ve noticed that Waylon’s breathing has become more difficult, especially with activity. This is something we will be discussing in detail with his care team, along with what this may mean moving forward and when his next surgery may be needed.

We are so grateful for the continued care and support surrounding Waylon, and we appreciate everyone who keeps him in their thoughts and prayers as we navigate the next steps in his journey.