2014, looking back…

I have done almost NO writing in 2014, for many reasons, but mostly because we were in a knockdown drag-out fight for Cole’s life and I could barely put one foot in front of the other. Last blog I wrote “What if I can barely function outside of “survival mode”?” But turns out I didn’t need to figure that out because I was far from done with survival mode. And today it feels like we’ve set up camp here. I certainly do not have the time or emotional energy at this point to relive every dramatic event of this crazy year in writing, but I hope someday I will (still waiting on that book deal…).

2014 has been put behind us, a new year is here, and we have made it through the hardest year of our lives! But we are still here, still fighting, still holding onto HOPE ALWAYS. While I cannot yet go into the details, the many terrifying, many painful, many miraculous and many beautiful details of this rocky year, I can show you a glimpse of what the year looked like for us by sharing my 2014 timeline. Those who know me, I keep notes of everything (and after a year like this I would be lost without it!). I keep track of treatments, hospitalizations, procedures, and other cancer related dates on a timeline, which has been extremely useful in managing my son’s extensive medical history. There have been many times in the last year that the hospital staff takes my handwritten 8 year timeline and makes a copy for their own notes.
This wicked roller coaster of a year can best be explained by the timeline of what happened date by date. Maybe someday I’ll have the courage and stamina to try to explain how we managed to survive it…

2014 Timeline

12/31/2013 Readmitted with fever after discharge 12/30, septic post PICC line removal

01/05/2014 Discharged from hospital on daily IV antibiotics

01/10/2014 IR procedure replaces stent (found to be kinked after presenting with fever)

01/22/2014 IR procedure replaces stent again after change in drainage and fever

02/27/2014 Stent check and change, coils used to attempt to embolize still present bile leak

03/27/2014 Stent check and change, fibrous glue added because leak still visible

03/31/2014 ERCP/IR renedevous to internalize stent

04/11/2014 Cole’s first full body massage

04/14/2014 CT Scan

04/15/2014 Cole throws out first pitch at Charlotte Knights game

04/19/2014 Easter in Charleston

04/22/2014 Cole’s first reflexology

04/28/2014 Exit appointments with Anderson and Martinie

04/29/2014 Released to return to STL, stable with endostent

05/24/2014 8th Grade transition mass

05/29/2014 Emergency return to Charlotte (fever and increased bilirubin)

05/30/2014 Endostent exchanged with ERCP

06/06/2014 Admitted LCH abdominal pain

06/08/2014 Missed year 7 of Camp Rainbow

06/13/2014 Home to STL to visit pre-surgery

06/24/2014 Admitted to STL Childrens with fever, elevated WBC

06/25/2014 Discharged SLCH to airport direct to CLT, directly to LCH ER

06/26/2014 LCH and Healthcare USA reach agreement

06/27/2014 Revision surgery for hepaticojejunostomy (failed procedure, portal vein bleed requiring OR rescuitation and 11 pints of blood, after 10 hours he came out of surgery to the PICU disconnected with open abdomen, not expected to survive the night)

06/29/2014 After remaining stable for 36 hours postop, Cole is taken back to the OR to attempt to washout the abdomen and place a bile drain (surgery #2)

07/02/2014 Surgery #3 – intestinal repair with gastro bypass and placement of j tube

07/04/2014 Surgery #4 – completed hepaticojejunostomy and closed abdomen

07/07/2014 Discharged from PICU to 11, bile drain accidentally pulled out, Wang attempts unsuccessfully to replace drain in IR

07/11/2014 CT scan shows abdominal fluid collection in pelvis, Cole returned to PICU

07/12/2014 CT guided JP placement in pelvis, followed by D&I by Swan. Cole remains intubated after and returns to PICU

07/13/2014 Cole extubated to watch the World Cup Championship

07/16/2014 Ultrasound guided R chest tube placement plus PICC line placed

07/17/2014 Discharged to 11 from PICU

07/20/2014 CT of abdomen

07/23/2014 Chest CT, shows bilateral effusions worsening + inflitrates

07/24/2014 Bronchoscopy by Hufford, to PICU after without intubation

07/25/2014 Ultrasound guided L chest tube placed in PICU, clogged R tube removed

07/28/2014 Discharged to 11 from PICU

07/29/2014 JP drains from accordion to bile bags (suction to gravity)

08/04/2014 Right JP drain pulled

08/05/2014 R chest tube pulled – followed by resp distress, rectal bleeding, 4 am chest xray shows R lung fully collapsed

08/06/2014 First thing transferred to PICU, emergency intubation, placed R chest tube (hemothorax) along with NG and foley

08/08/2014 Sedated with propofol drip (after writing on white board, using bedpan and suctioning himself while on versed and precedex drips), Chest CT shows large left effusion with occulation and right effusion

08/12/2014 VATS procedure by Dr. Maxey (3 large chest tubes after)

08/13/2014 Extubated

08/15/2014 Maxey removes 2 left chest tubes

08/16/2014 CT chest/abdomen, returned to 11 on O2 (stepped down from PPV)

08/17/2014 Maxey removes right chest tube

08/21/2014 IR replaces feeding tube, removes last JP; weans from O2

08/24/2014 Cole to rooftop and outside for first time in 9 weeks

08/27/2014 Biliary drain that wasn’t properly in bile duct pulled

08/28/2014 Upper GI/Fistula study, dose 1 of remicade

09/02/2014 IR replaces feeding tube (lengthened to make it past fistula)

09/18/2014 PICC Line replaced

09/17/2014 CT scan

09/19/2014 DISCHARGED FROM HOSPITAL AFTER 86 DAYS!!! Going home on tube feeds and TPN

09/20/2014 Cole gets LONG overdue Haircut with Dr. Martinie

09/22/2014 1st post discharge clinic with Anderson

09/29/2014 Clinic + consult with Gopalareddy on the status of Cole’s liver function

09/30/2014 Readmitted with increased abdominal pain and fistual output

10/03/2014 Abdominal CT

10/04/2014 Pulled G tube due to heavy output, wound care consult for fistula dressings, Yom Kippur

10/08/2014 ECHO (normal), Doppler of PICC shows clot, consulted Dr. Miles on fistulas

10/09/2014 Replaced PICC line

10/12/2014 Abdominal ultrasound, chest xray

10/14/2014 MRI with MRCP

10/16/2014 PET scan confirms mass in spleen is active recurrence

10/17/2014 Discharged to RMHC, Chrissy, Eli and Mark visit

10/19/2014 Cole readmitted with fever, septic

10/20/2014 Cole moved to PICU with low Bps

10/21/2014 Cole returned to floor with no PICU interventions needed

10/22/2014 Consulted Crimaldi, CT for pallative radiation planning

10/23/2014 Radiation stimulation and treatment 1 of 5

10/24/2014 Radiation 2 of 5

10/25/2014 Discharged to RMH

10/26/2014 Cole is special guest of Carolina Panthers at game vs Seahawks

10/27/2014 Cole readmitted with fever, septic

10/28/2014 Cole stat intubated in PICU due to severe septsis. We are told he will not survive infection.

10/29/2014 Family arrives in town due to Cole’s prognosis, but after a drain is placed in the liver with ultrasound guidance in the PICU room, he begins to improve.

11/01/2014 Cole extubated after miraculous improvement

11/03/2014 Cole returns to 11 floor after overcoming septic infection

11/04/2014 Colangiagram

11/05/2014 Uncle David visits

11/10/2014 Radiation 3 of 5

11/11/2014 Radiation 4 of 5

11/12/2014 Radiation 5 of 5

11/10/2014 Jim and Jimmy in town

11/11/2014 Tracy in town

11/14/2014 Liver drain exchanged

11/17/2014 Cole discharged to RMHC 21 days after near fatal septic event

11/18/2014 Braces removed!

11/21/2014 MRI with MRCP shows splenic nodule stable, HIDA scan shows no bile flow to the intestine.

11/22/2014 Cole’s 14th birthday!

11/25/2014 New PTC drain placed, successfully getting bile flow to intestine and compressing previously undrained areas of the liver.

11/27/2014 Thanksgiving with family in town

11/28/2014 To Myrtle Beach with family

11/29/2014 Tiffany and Eli in town

12/15/2014 Admit for blood transfusion and PTC exchange (both drains)

12/17/2014 Cole presents the game ball at the Hornets game (Sprite Ball Kid), Eli in town

12/22/2014 Wings of Hope flies us back to STL for Christmas

12/29/2014 Wings of Hope flies us back to Charlotte

We begin 2015 knowing that Cole’s recovery, while miraculous, remains very fragile. It is uncertain how long his liver will remain functional with all the damage that has been done. While he’s regained a lot of strength and function in the last month, we know his time remains limited. We hope in 2015 to make the most of every day, make a difference for others, and continue to LIVE as much as we are able. Thank you for joining us on this wild journey.

HOPE ALWAYS,

Laura

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One thought on “2014, looking back…

  1. Janet Moran

    Laura, I realized a while back that I had not heard any updates about Cole in a while. Now I understand why. I am so sorry that you have had such a challenging year. I can’t even imagine what it has been like for you. I will continue to keep you and Cole in my prayers. I am so glad to have my faith to rely on in difficult times and I Know this has been a source of strength for you as well. You are in my thoughts.

    Reply

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