(Updated timeline at the bottom.)
Hello, my name is Sarah, and this is my son DJ. He is 5 years old. He recently was diagnosed with Noonan Syndrome this past summer of 2017. Since Mid-November of 2017, he has been dealing with severe Ascites (the accumulation of fluid in the peritoneal cavity) that causes abdominal swelling. He has now been through 4 paracentesis already , taking out over 7 liters of fluids within the past 4 weeks!!
After weeks in the hospital and many tests, the doctors have ruled out any underlying issues that could cause the Ascites. His liver and kidneys look good and they took a bone marrow sample to test for cancer. Even though he has some weird results on the bone marrow and blood tests, they’re ruling out cancer as a cause for the severe Ascites.
The doctors have determined that the fluids in the abdomen cavity are Chyle Fluids (milky bodily fluid consisting of lymph and emulsified fats). They’re assuming that DJ’s Lymphatic system is leaking into the cavity of his abdomen. I was told that this is such a rare medical case, that the insurance couldn’t find any lymphatic specialists on the West Coast, and we need to get DJ to CHOP (Children's Hospital of Philadelphia) or Boston.
The GI specialists in Vegas have told me that even the lymphatic specialists that specialize in these types of cases have only encountered about 20 cases over the past 20+ years.
Since Mid-November, he’s been to so many doctors and specialists here in Las Vegas. Mid-November the Ascites became so severe that our pediatrician sent DJ to the E.R. We went to UMC Children’s Hospital Emergency Room (3) times. He was admitted to the Pediatric floor for 7 days where they performed two paracentesis (the piercing of the body’s cavity with a hollow needle to remove fluid or gas). On the first instance, they did an emergency intervention as he could no longer go pee or poo , and they were worried that the pressure from the fluids against his organs would start causing organ failures. DJ was placed in Pediatrics ICU where 6 nurses had to hold him down for the first paracentesis as they could not use anesthesia since he had eaten some food. They gave him local numbing in order to drain fluid from his abdomen. At that time, they took 1 liter of fluids out of his abdomen.
On the second paracentesis, they placed him under full anesthesia. They were able to get a little over 2 liters of fluids out if his abdomen.
The hospital has run CT scans, many x-rays, ultrasounds and have taken many blood draws for labs. The UMC Hospital staff no longer knew how to treat him. I was told by the GI specialist at UMC, that she is baffled. Typically, babies that have Noonan Syndrome with this type of severe lymph leak generally “self-terminate” during pregnancy. However, DJ was discharged from UMC in his current condition and sent home again two more E.R. visits after discharge because they did not know how to help him.
After not receiving the necessary help at UMC, DJ’s heart specialist suggested we try Sunrise Children’s Hospital to get a second opinion. We have been at Sunrise Children’s Hospital since December 5th. They’re continuing to run more tests and have done two more paracentesis already. They took another 4 liters of fluids from his abdomen. He has now had a total of over 7+ liters of fluids taken from his abdomen within the past four weeks. They also took a bone marrow sample to test for cancer at the same time they did the third paracentesis.
God has other plans for him as he continues to fight against all odds! He has a plan and purpose for my son’s life.
We are currently still at Sunrise Children’s Hospital waiting to get transferred to CHOP (Philadelphia). Since DJ’s veins keep collapsing from the IVs , they placed a PICC Line in him on Friday , yesterday they found a clot in his line and had to remove the PICC line! Today they placed a Broviac with double lumen in his chest.
He’s been traumatized in fear from all the things people are doing to try and help him. He’s only five years old and does not understand everything that is going on. He only knows it’s all hurting and he cannot eat. Every time someone walks in the room he immediately says, “What are you going to do to me?!” Crying...
At this point, we are waiting for the transfer to Philadelphia.
As a single mom of two, I will need to leave my 6 year old son Jerimayah with friends in order for DJ to be seen in Philadelphia Children’s Hospital for further medical observations and care. DJ has been through so much but God wants him to continue to fight in his own tenacious and tough way!
I have no idea how much more medical help DJ will need or how much it will cost. At this point I am asking for help. As a single mom, I’ve missed a lot of work being at my son’s bedside. We don’t want to lose our basic necessities such as keeping our apartment, food on the table or the basic necessities my kids need. All my family and friends can do is believe & pray with me that we get answers soon with the right treatment. We are all praying for a miracle! Anything is possible with our big God!
If you can please help in any way, even pennies help to contribute to DJ’s treatment and care.
If you are not able to donate or financially help during our journey, I sincerely appreciate all the prayers and words of encouragement!!! They are needed!
We can’t help everyone, but everyone can help someone. There is no measure to the value of each breath a person takes, so please help me maintain my son’s gift of life.
Sincerely - THANK YOU - for taking the time to read about DJ and his story!
God Bless You! xo
#toughDJ #prayforDJ #againstallodds
•Nov 20 - Sent to E.R. by pediatrician Shoo, admitted @UMC.
•Nov 22 : 1st Paracentesis was down with DJ awake in PICU being held down by 6 nurses!! They took out - 1 Liter of fluids @UMC.
•Nov 25 : 2nd Paracentesis under full anesthesia with surgeon Dr. Jones, removed - 2.2 Liters @UMC.
•Nov 27 : GI specialists decided to continue outpatient care from their office; gave DJ a 30 day dosage shot of Octreotide in the butt right before releasing him. @UMC.
•Nov 28 : allergic reaction to Octreotide shot, back at UMC E.R., but doctors didn’t know how to help, so they sent DJ home with antibiotics and still severe Ascites.
•Nov 29 : appointment with GI specialist @ UNLV Medicine - she did not have answers on how to help yet. “Researching” further but meanwhile again sent DJ home with severe Ascites and pain.
•Dec 1 : followup appointment with pediatrician Dr. Shoo, sent DJ immediately back to the E.R. @UMC. Unfortunately the E.R. sent DJ home again as they did not know how to further help him (AGAIN!).
•Dec 5 : Enough is enough. Called DJ’s Regular heart specialist and he suggested to go to Sunrise Children’s Hospital. Took DJ to the E.R. @Sunrise and he was immediately admitted to the Pediatrics floor.
•Dec 8 : 3rd Paracentesis; performed by Dr. Jones who took off - 2 Liters , and they took a sample of his Bone Marrow for testing @Sunrise
•Dec 15 : 4th Paracentesis , took off - 2 Liters @Sunrise. And they placed a PICC Line in DJ’s left arm.
•Dec 17 : DJ was throwing up all day and complaining about pain in his left shoulder.
•Dec 19 : Ultrasound of left arm/shoulder found a clot in the PICC line and it had to be removed.
•Dec 20 : 5th Surgery a Broviac with double Lumen was placed on the right side of DJ’s chest. @Sunrise
•Dec 22 : 6th surgery (5th Paracentesis) took off - 2 Liters of fluids @Sunrise.
•Dec 26 : after a long hard battle with doctors & insurance we were medically transferred to CHOP! ✈️
•Dec 27 : 7th Surgery time, the Broviac had to be re-wired, (6th Paracentesis) they took off 1 Liter of fluids, and placed a semi-perm drain with bag @CHOP.
Nurses started emptying/draining bag 250ml every 4 hours.
•Dec 28 - drained 250ml every 4 hours
•Dec 29 - drained 250ml every 6 hours
•Dec 30 - drained 250ml every 6 hours
•Dec 31 - drained 250ml every 6 hours
•Jan 1 - drained 250ml every 6 hours
•Jan 2 - drained 250ml every 6 hours
•Jan-3-2018 : Lymphangiogram with Dr. Dori & Team @CHOP . 8th Surgery that lasted 7 hours.
•Jan 3 to 4 : stayed in PICU for observation.
•Jan 4 : evening moved back down to regular Pediatrics floor (4 South). Drained 350ml every 4 hours from bag.
•Jan 5 : Drained 350ml every 6 hours from bag.
•Jan 6 : drained 350ml when possible every 6 hours. One drain time could not get anything out.
•Jan 7 : drained only 166ml in 24 hours.
•Jan 8 : drained only 49ml over 24 hours!
•Jan 9 : DJ started the FAT Challenge, and his drain was clamped. He is now being observed if belly will grow big again or if his body will process foods normal now...
•Jan 10: Ultrasound of stomach.
•Jan 11: Drain removed from abdomen!
•Jan 13: Procedure #9 Broviac removed from chest under sedation (he had a horrible time waking up but he’s okay now).
•Jan 14: RELEASED TYJ!
Feb. 1, 2018 - Thursday was DJ’s first day back at school. What a little miracle boy! I’m so grateful for the breath of life in him! When doctors on the West Coast said they cannot help him and have no cure (with a 50% mortality rate, this was not what any parent wants to hear).. But Momma does not accept NO for an answer. We fight. We do not quit. “Someone is going to cave & give in, and it’s not going to be me..!” Just one of the many conversations I had with the health insurance company... when you finally find that one specialist in this world that can help your son, YOU FIGHT! You fight on your knees, praying for a miracle! And you fight with the humans that let paperwork stand between life and death of your child! If only I could tell every person I meet of this life changing experience we’ve had. The people we’ve met along the way. Just WoW! DJ pioneered the way! God opened doors that have never been opened in the history of children’s medical transfers... Thank you God for opening doors that needed to be opened! For giving those specialists the wisdom and knowledge how to help DJ’s rare medical problem! And thank you God for giving DJ a miraculously quick recovery! Leaving all nurses and doctors astonished <3
It’s one of those , ‘if you didn’t see it you wouldn’t have believed it’ experiences ;) I am so grateful for everyone around my boys and I ! <3 Friends that stepped up and stepped in when we needed help!
DJ still has a journey ahead of him, but we are grateful for the “little things” in life , such as being HOME and being able to go to school and back to work! #thankful #grateful #wow #twomonths
When you’re in despair and have cried your eyes raw , don’t quit... while your down , on your knees, look to Him and hold on to your faith , He will make a way! #dontquit #movemountains #faith #stepbystep #wedonttakenoforananswer #powerinHisname
Feb. 9, 2018 - DJ had a follow-up appointment with the Hematologist, because some levels were still off when he left Philadelphia, PA (CHOP). We received a call a week later that all results looked okay now! Woohoo ... DJ goes back in 6 months to check again.
Feb. 26, 2018 - DJ had a follow-up appointment with his heart specialist. The ASD (hole in heart) has not gotten bigger or smaller, so the doctor wants to wait a year to give DJ's body time to recover before doing the procedure on his heart to close the hole.
** After a few people mentioned this , I wanted to leave a note :
Please note when making a donation, you will see a “tip” drop down bar. This is optional. The tip goes to GoFundMe, not towards DJ’s help. If you wish to not leave a tip, click “other” and type in “0.00”. **
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