2020 Never Stop Expecting A Miracle 2020

Heroes come in ALL sizes

The end of 2019 had brought many days of missed school and the longest "episode" to date of pancreatitis for Jay.  He now has a team of doctors at Children's Hospital: Pediatric Pancreatitis doc, Pain doc, and Psychologist.

From May 2019 to October 2019, his elastase test results have dropped (measures the function of the pancreas), categorizing him as an EPI patient.  EPI is short for Exocrine Pancreatic Insufficiency.  EPI is a condition characterized by deficiency of the exocrine pancreatic enzymes, resulting in the inability to digest food properly, or maldigestion. This is caused by a progressive destruction of the pancreas and it's tissue. Here is a link better describing EPI... https://pancreasfoundation.org/patient-information/ailments-pancreas/exocrine-pancreatic-insufficiency-epi/

This means that his disease is still progressing. In order for him not to become malnourished, he needs to take more medicine to help break down the food every time he eats. Three pills for every meal, and two for every snack. 

Here's just a glimpse of a normal day full of pills...  3 viokace with breakfast, 2 with snack, 3 with lunch, 2 with a snack, and 3 with dinner. Then before bed: 1-2 vitamins (right now selenium, vit C, D, or E), 3 gabapentin, and 4 other supplemental gummies (fiber and vit B).  He gags and almost always has to be reminded to take his medicine, but I guess if I had to take that many, I'd avoid it as well.

Oh and on bad days, add a few more pain relievers and the newest --migraine nasal spray.

Jaylen is trying to keep up with everyone, even though we can tell his body is worn out some days. Basketball and weight training keep him active for this season. He asked me this year if he has a disease. It was extremely hard to explain chronic pancreatitis to our 14 year old without scaring him or crying.

H.O.P.E.
HOLD ON PAIN ENDS

https://pancreasfoundation.org/patient-information/childrenpediatric-pancreatitis/chronic-pancreatitis-in-children/

July 2019 Update

Yoga Study

Paying close attention to instructions

Favorite eats after Milwaukee trips

Coloring it purple for pancreas disease awareness month--JULY

Jaylen had a follow up appointment at the end of May with Children's Hospital of WI. Dr. Goday had mentioned that he thought Jaylen has become chronic because of the episodes being so close together and less intense now. This is a normal path for chronic pancreatitis.  I didn't really want to face that his acute recurrent has now become chronic, but I guess we don't have a choice in the matter. Doc ordered a follow up elastase test, MRCP (MRI with contrast), and wanted him to start relaxation techniques to try to help manage pain. Jay also got to participate in a yoga study. This study, from what I gathered, was going to measure the level of inflammation before and after yoga poses. It will be interesting to see results, but I'm sure the study will have many participants and take a lot of time. His doctor and I discussed starting him on the drug gabapentin, a nerve blocker, to try to keep his small flares from keeping him out of school. We had reviewed amitriptyline, but Jay's heart showed borderline QT, preventing him from starting that one. The script was filled and Jay started the meds after school let out the beginning of June. Anything to help at this point would be lovely.

Fast forward to July 2nd- MRCP and relaxation techniques. He did awesome in the MRCP machine, laying still so they didn't have to do anything twice.  He also learned so much from the psychology/pain management department on how to relax his body during an episode. We came home with a lot of information.

Results came back for elastase test-- the test showed 342 ug so his pancreas is still at a normal range when it isn't in a flare. This just means that aside from malfunctioning with pancreatitis, it still does its job outside of an episode.

MRCP shows more narrowing of some parts of the pancreatic duct, which is consistent with chronic pancreatitis.

Vitamin levels are good, liver, gallbladder, spleen, adrenal glands, kidneys, ureters, bowel, lymph nodes, abdominal wall, and bone imaging appear all normal.

Jay continues to have small episodes about every other week where we control pain from home. We use the tools given to us along with tylenol and ibuprofen. Couple weekends in July have brought more severe episodes, but he always perseveres! Warrior child! Still praying for healing and strength for our JJ.

Pancreatitis sucks...



 

Quick visit to the hospital

Jaylen's pancreas decided to act up Friday night. Pain got so bad that Jaylen knew it was time for us to go to the hospital. Jeff carried him down the stairs and to the car, which isn't easy any more because he is over 100lbs. Driving to the hospital is always stressful. Hearing your child  screaming in pain is not fun. The puking began as well. *Helpless to this. The emergency department had a lot of people in it when we arrived. This always scares me. Not only am I worried that people will be taken back before JJ, but also the amount of germs that he may pick up while we are waiting. When Jaylen catches something, it seems to inflame his pancreas. *Ahhh! When Jay was curled in the wheelchair, he looks me in the eye and screams that he "Can't do it- Get them mom, get them." *Helpless to this. He crawled out of the wheelchair because being in the fetal position on the floor seemed like it eased pain just a little. I went back to the check in area to ask about when Jay would get triaged, to inform them things are extremely bad, and that he was now on the floor. Luckily, they sent someone out to come get him. *Prayers answered there. The triage nurse put him high priority and I couldn't have been more happy about that. Got him back to a room, started IV right away with pain meds, anti-nausea, and fluids. His lipase levels were at 8885 and amylase 1117 confirming pancreatitis. JJ got minimal sleep but maximum relief in the ER. Admittance to pediatric department happened around 3:15am Saturday morning.  We were also informed that he would be part of the historic transfer of pediatric patients to the new Javon Bea Hospital later in the morning. By the time the transfer took place, Jay was feeling SO much better. Pain scale 2-3 out of 10. He even had breakfast. It amazes me how his body bounces back. Jay ended up being the last pediatric patient transferred to the new hospital. This was scary and also pretty cool. Jay got to ride in an ambulance all strapped in tight. The staff at the new hospital ensured safe travel and most definitely more comfortable rooms at the facility. Once transferred, he continued IV medication until around 5pm. The hospitalist came in and had talked to Jaylen's specialist in Milwaukee. The lipase had plunged down to the 1700s and they didn't see why Jaylen needed to stay the night. JJ and I were pretty stoked to go home. Another pancreatitis adventure. 

I still pray every day for healing and a cure. I hate pancreatitis and I know for a fact JJ does too! Love you Jay! Keep on being a warrior!

Four years ago

Four years ago we got the news of acute recurrent pancreatitis.

Every day I thank God for your health and happiness!

Fight and play on Jaylen!

Mom, Dad and sisters love and admire you!

Jay 4-21-18

Saturday night April 21st landed poor Jay in the hospital. He took the pain and suffering like a true warrior. 

Released yesterday but- Enough is enough pancreas!

Pray for relief.

H.O.P.E. Jaylen - God has a plan for you.

Sister sister

Genetic Counselor Called Today...

**JJ’s sisters DO NOT have the SPiNK1 mutation!!**

This is a sigh of relief. 

Counselor is expecting more developments within the next month or so on deletion and duplications of the PRSS (hereditary pancreatitis gene), CFTR (cystic fibrosis gene), and SPINK1 (gene associated with hereditary pancreatitis).  There may be more blood work for Jaylen at that point. In the meantime we pray for health and always happiness!

Happy Holidays!
&

Thank You God! 

Update November 2017

Jaylen has had a few small episodes already this flu season. He has missed a handful of days due to the exhaustion and pain. We are praying for no hospitalizations this year again :)

At the end of the summer, JJ had what is called a WES or Whole Exome Sequencing. It is a genetic panel that tests for any abnormalities or variants in his DNA sequences. They’d be looking for these because some doctors are still convinced that the mutation in the SPINK1 doesn’t actually cause the recurrent pancreatitis on it’s own. It has to have another mutation or sequencing or variant that acts with it.

We are pleased to announce the WES came back with —no variants in his disease genes that are reported to be associated with the SPINK1 mutation. This test also looked for 59 different disease causing gene variants. All these were negative— which is awesomeness!  Still confuses the genetic counselor but it is what it is at this point. JJ is a very special kid no matter which way you look at it.

The genetic counselor will have results on the SPINK1 mutation for Jaylen’s two sisters by December 20th-finally! I will try to post another update after the Holidays. We are continuing to try to pump JJ full of Antox, vitamin C, probiotics, and any other anti-inflammatory vitamin we can find. Pain is controlled by ibuprofen and Tylenol.

He is such an inspiration to his dad and I. He will continue to enjoy every good day! Love him.