Saturday Morning, 7/30

Jadon’s Wake and Mass of Christian Burial will both take place at St. John’s Nepomuk Catholic Church in Yukon, Oklahoma.  His Wake is scheduled for Monday, August 1 at 7PM.  The Mass of Christian Burial is scheduled for Tuesday, August 2 at 10AM.  The church and funeral home details are provided below respectively.

St. John Nepomuk Catholic Church
600 Garth Brooks Blvd.
Yukon, OK 73099
405-354-2743

Yanda and Son Funeral Home
1500 W. Vandament
Yukon, OK 73085
405-350-7101

The family would like to thank everyone for their generous acts of compassion, kindness and prayers through this long and difficult ordeal.  The family would also like to thank everyone who participated in the Walk for Jadon held at the Yukon High School gym tonight.  A very special thank you goes out to Father Novak, Deacon Dan Lombardi, the school and church families at St. John’s Nepomuk.  A very, very special thank you to the dedicated medical staff at OU Children’s Hospital who showed their caring compassion for Jadon through the daily routines of treatments, patient maintenance and unending family questions.

In closing, I have to admit my personal knowledge of leukemia was limited to St. Jude advertising showing the bald kids that apparently had a much different outcome.  Leukemia had never touched anyone in our family before.   After witnessing the terrible ordeal first hand that Jadon endured this experience has given me not only an elementary baseline of knowledge about the disease but it allowed me to see the strength of Jadon’s character that was never apparent to me before during our casual interactions.  As some of you may already know, the treatment for the disease is almost as terrible as the disease itself.  I witnessed Jadon taking every injection with only a grimace knowing he was being subjected to extremely high levels of pain.  Not to mention the numerous negative side effects that would accompany each treatment.  Even though the chemotherapy burned through his body like hot coals his will to fight never waned.   Although Jadon ultimately lost his battle to the disease, his tenacity to beat this disease was apparent all the way to the end.  He truly exhibited the resolve of a hero.  As his grandfather I hereby award Jadon Conger the highest award for bravery and conspicuous gallantry while engaged in action against an unseen enemy – Leukemia.  Good bye Jadon and God Bless you for eternity for you are my hero never to be forgotten.

Thursday Night 7/28

This morning the parents made the difficult decision to remove life support from Jadon’s body and hope for a miracle.  The dosage level of the blood pressure medications were reduced by half, the dialysis machine was removed and the trach was disconnected.  Jadon’s blood pressure tapered down to a systolic value in the 20s with shallow respiration.  Jadon maintained this level for about two hours before the life left his body at 1:50PM this afternoon.  He died in the presence of mom, dad, Father Novak and Deacon Dan Lombardi.

Today I lost my grandson, friend, favorite chess opponent, kite flying buddy and James Bond movie buddy.  Those big beautiful brown eyes will only be available to see through the many photographs recorded over the years.  Admittedly a poor substitute for the real thing.  The photos cannot let me hear his laughter, sense of humor, see any more soccer or basketball games.  I won’t get to see him walk across the stage to receive his diploma and grow into the man I know I would have been proud.   Instead I have a large hole in my heart that will never heal.  However everytime I watch a James Bond movie he will be sitting right next to me and won’t complain when I eat all the popcorn

A wake for Jadon is scheduled for Monday evening with a memorial service for Tuesday morning at St. John’s Nepomuk Catholic Church in Yukon.  The times have not been set at this time but will be provided in my next and final blog.

Thursday Morning 7/28

Jadon’s blood pressure continues to be an issue even with three medications being administered.  He is regularly receiving blood products to maintain a nominal blood count.  Visual observations reveal his nasal debridement site has resumed  bleeding as evidenced by the blood in his mouth.  His lower abdomen is distended and his breathing has become labored.  He was not on the dialysis machine when we arrived last night but the attending doctor was going to reinstate it due to the excessive fluid retention and blood chemistry levels.  The dialysis machine was reinstalled without incident at the parents request.  The chemotherapy will not be resumed due to his weakened state.  The attending doctor has recommended his DNR be reinstated.  Jadon’s prognosis remains grim.

The St. John church deacon was with us most of the evening.  We want to thank everyone for their continued thoughts and prayers.

Tuesday Night 7/26

Jadon is receiving an additional blood pressure medication (vasopressin) at the direction of the new attending physician.  This brings his total number of BP medications back to three although it will be at a lower dosage level than before.   His systolic BP has been maintaining in the 80s with the addition of the vasopressin.  The oncologists have elected to begin administering chemotherapy tomorrow to prevent the leukemia from returning at a more aggressive rate pending the family’s consent.   He remains on dialysis due to his nonexistent kidney function.  His toes and skin issues continue to improve.

Other activities today included two units of blood and his trach tube was replaced.

Thank you for keeping the prayers coming as Jadon is needing the healing hand of his Lord and Savior more than ever.

Monday Morning 7/25

Jadon has been maintaining nominal blood pressure levels for the last few days.  He remains on two medications; epinephrine and dopamine.  The epinephrine was increased slightly yesterday to ensure he maintains acceptable levels.  He also remains sedated which keeps him limited to head nods in response to verbal requests. Last nights observations revealed his skin color appeared more normal and the former rash/blistering sites on his abdomen were healing.  Both of his feet still exhibited a dark skin color but showed evidence of healing.  His kidney output is still almost nonexistent keeping him on dialysis.  I have not been made aware of any pending procedures this week.

 

Thank you for your continued thoughts and prayers.

Friday Afternoon 7/22

Jadon is definitely showing signs of improvement.  His need for the ventilator has been reduced.  The remaining two blood pressure medications have been reduced to half their original dosage.  His BP continues to maintain at the low end of nominal but is being closely monitored.  His sedation is also being reduced.  The CRRT dialysis is still required due to his low/nonexistent kidney output.  The ICU doctor is planning to install his feeding tube this afternoon.

The family wishes to thank everyone for their generous donations of blood in Jadon's name and for their continued prayers.

Tuesday Evening 7/19

Jadon's blood pressure continues to hold while the BP medications are slowly being reduced.  He is currently receiving only two medications.  It was reported the systolic pressure is maintaining around 100.  The darkened skin around his feet is still apparent but should respond to physical therapy once all the BP medications are removed.

To aid the family with incurred medical expenses St. John's is sponsoring T-shirt sales and a 'Pray 4 J' relay walk.  The email below will provide all the details and was just provided for posting this evening.

Subject: Pray 4 J FINAL t-shirt order
Reply-To: St. John Nepomuk Catholic School <dheard@sjnok.org>
St. John Friends and Family,

Tomorrow, Wednesday July 20th will be the FINAL day to place an order for the "Pray 4 J" t-shirts. The drawing of the shirt is attached. Cost is $15 for each shirt ($16 for XXL and $17 for XXXL)

Orders must be in by 2:00 pm and must be prepaid. No orders will be taken after Wednesday because we need to be able to get them in time for the walk on July 29th. At this time, these will NOT be available at back-to-school night.

Please e-mail me with your sizes and money can be dropped at the school between 9 am and 2 pm Wednesday.

You may still register for the "Pray 4 J" team for the Relay for Life walk on July 29th. That will take place at 7pm in the old Yukon High School Gym. As I get further information on the walk I will be sure to update everyone.

Click here to view the TEAM page for Pray 4 J
If the text above does not appear as a clickable link, you can visit the web address:
http://main.acsevents.org/site/TR?team_id=982207&pg=team&fr_id=32258&fl=en_US&et=9IVkB9NvrP9KuDojUxL0tg..&s_tafId=881047


Thanks to everyone for your continued support of Jadon and the Conger family.

Denise Heard

Monday Morning 7/18

Jadon’s blood pressure continues to maintain a marginal level but is now requiring four medications.  The doctors have informed the family that the level of blood pressure medications cannot be increased without causing damage to Jadon’s cardio system.  These medications help the heart maintain blood pressure but blood flow to his extremities is minimal.  As a result, the skin tone in his hands and feet have appeared to darken.  Messaging of these areas seems to temporarily relieve this condition.   He has reached the end of what is medically possible and must rely on his body to heal and fight ongoing infections.  He received three units of platelets last night.  His liver and kidney functions are minimal to nonexistent.  As a result, he remains on CRRT (Continuous Renal Replacement Therapy) dialysis.

Jadon is showing longer periods of being awake and lucid.  He still has a tube running to his stomach to remove the residual blood from his fungal debridement site in the nasal area.  This tube prevents him from talking but he does attempt to form words which can be understood most of the time.  The Jadon we all know and love is still with us.  His recovery is now in the hands of our lord and savior.

Addendum to Monday Morning 7/18, 6:25PM
The skin darkening that was apparent last night is more visually pronounced this morning in both feet extending up the ankle.  The cardio physician examined Jadon this morning performing an ECG (Electro Cardiogram) which showed evidence of liquid surrounding the heart.  They returned this afternoon to remove the liquid observed during their first examination by inserting a needle into the chest cavity.  This was necessary to ensure the liquid was not interferring with the heart pumping action thus negatively effecting the blood pressure.  Further examination found nothing to remove.  He is currently being slowly removed from the norepinefrine which is causing the restricted blood flow to his extremeties.  This should restore the blood flow and improve the darkened skin appearance.  His blood pressure is being closely monitored during this process which showed a systolic pressure consistantly above 110 during the cardio doctor's examination/treatment.  The tube in his throat to remove blood draining from his nasal cavity was removed today as well as the packing in his sinuses.  While he his still unable to talk as time passes this condition should improve.

We are cautiously excited about these developments.  I will post any new developments as they become known.

Saturday Afternoon 7/16

As of yesterday, Jadon is in septic shock.  Jadon’s blood pressure is currently maintaining but is requiring dopamine, epinephrine and norepinephrine to maintain nominal levels.  Doctors could hear a slight lung obstruction that was determined to be two bacterial infections in his lungs.  An antibiotic IV drip was resumed.  Jadon is responding to questions.  His leukemia treatment is on indefinite hold pending his condition being upgraded from a high critical status.  ICU doctors have informed the family there is nothing additional that can be provided to aid in his recovery.  At this point in time his prognosis is grim.

Thursday Morning 7/14

Jadon completed the surgery without any complications.  The tracheostomy procedure was completed successfully which has done away with the breathing tube.  The dialysis machine had some initial issues but is functioning now.  He had to have blood pressure medication to keep his pressure up.  This is expected to be gradually reduced during the course of the day.

The walls of his room are decorated with all the get well cards received from classmates, friends, caring people and relatives.  He has his quilt from the Lutheran Church quilt ministry in Yukon.  I’m sure there are other items that I am not aware.  The family wishes to thank everyone for their continued caring support.

Jadon remains in critical status and has a long recovery road ahead.  Jadon has lost muscle mass from his long duration in the PICU (Pediatric Intensive Care Unit).  Between the efforts of the medical staff and all the spiritual help from everyone we are hoping his situation will improve dramatically in the coming weeks.

Wednesday Morning, 7/13

Jadon is scheduled for surgery today at 3:30PM today.  The surgeon will inspect the previous area of fungal sinusitis in the nasal cavity and determine the need for further debridement.  Also the tracheostomy will be performed.  This will allow the breathing tube to be removed and allow his vocal cords to recover.  An addendum will be posted as soon as the surgeon reports their findings.

His vitals are stable and within nominal ranges.  He continues to be on dialysis as his kidney output is marginal to nonexistent.  He is sedated and resting comfortably but remains in critical condition.

Sunday Night 7/10

Jadon's kidney output remains almost non-existent which keeps him on dialysis.  He was removed from dialysis yesterday for about eight hours to see if his kidneys would produce output but had to be reinstated.  He has been receiving steroids during the course of his recovery.  The steroid infusion was briefly removed by the doctors in an effort to allow his body to repair itself.  This caused his heart rate to fall to a point that required the nurse to bag him until his heart rate was restored to normal levels.  The steroid infusion was therefore subsequently restored by the oncology physician which appears to have stabilized his heart rate.  He is currently receiving dopamine to help stabilize his heart rate as well.

The ear, nose and throat doctor will examine him tomorrow to evaluate any future surgery options this week.  The tracheotomy will also be discussed at that time.

Jadon's status remains critical.  Your prayers are needed more than ever.

Wednesday Night 7/6

There are several developments to report from yesterday.

Jadon’s urinary output volume tapered off to minimal levels in spite of continuous IVs.  An ultrasound of the kidneys showed no observable anomalies.  Due to the decreased kidney output he had a CRRT (Continuous Renal Replacement Therapy) dialysis machine attached last night to which he responded well.  This type of dialysis machine remains attached to the patient for 24 hours a day until the kidneys recover and begin an acceptable level of output.

Jadon is still showing blood loss from his nose at the fungal debridement site.  Packing treated with antibiotics was re-installed into the nasal cavity and should promote clotting to reduce/stop the blood loss.  The blood that drains from his nose is continuously suctioned from his stomach.

His blood work revealed high levels of  electrolytes, potassium and white blood cells.  Microscope examination for the presence of Blasts (leukemia cells) revealed none could be found.  A bone marrow biopsy is required to determine the level of leukemia still present though.

He is also scheduled for surgery at the beginning of next week to verify the fungal debridement site in the nasal cavity and make the final determination on the tracheotomy.

Jadon is currently not coherent but is resting comfortably.  His vitals continue to show nominal levels. 

Father Novak prayed with Jadon and the family this afternoon.  We want to thank everyone for their continued support and prayers.

Sunday Night 7/3

Sorry for the long delay between posts but the last several days have been very much the same in that he is holding his own and showing signs of healing.  His vitals continue to indicate within normal ranges with mild fluctuations noted during drug infusions or during his repositioning.  He continues to receive pain medication which keeps him sleeping most of the time.  In order to aid in healing his skin issues and helping expel the residual fluid in his lungs the wound care nurses have begun turning him from side to side every two hours.  The dark area on his right side has lightened considerably as a result.  His nose remains packed due to the bleeding from the tissue that was removed last Wednesday.  This is apparently a good indication meaning dead/diseased tissue would not bleed. The need for additional surgery into his nose is being debated by the doctors.  Also being discussed is the possibility of performing a tracheostomy.  He has had a breathing tube installed for 15 days now.  Five days beyond what the doctors recommend at this facility.

 

The status of his leukemia is not known at this time.  There is currently no firm time set for recovery of a bone marrow sample.

 

Additional information will be posted as it becomes known.  Keep Jadon in your prayers.