31st August 2009
Hi there,
Ray bought my computer quick so I could send out an e-mail. Even my fingers hurt as I type.
Briefly
Thurs 26 - Jed complains of pain in his tummy and head at 2h20 am. 4am we leave for Unitas. at 6am Jed's fever starts to climb, he has a seizure with a temp 39.5 - his body goes into septic shock. He hallucinates seeing fairies, popcorn, ants and a golden bridge... the "blue team" are called to Jed's room. Sister Hannie and Sister Elize work with extreme speed with the "blue team".... I watch as Jed's starts to slip away from me.... Doctor believes (as we all do, it is brain related), bleeding on the brain, fluid blockage - due to temp.... meningitis.... the panic doesn't stop - (I just vomit and vomit... I'm helpless.... useless....) More blood tests, x-rays, CT scan of brain.... nothing is confirmed.
Friday - no change, Jed's condition gets worse. He is screaming and non stop in pain. Doc decides to look for infection cause again (ruling out the brain and port needle), sonor done - appendix has a cystic formation, X-ray - confirms there is a problem - CT scan confirms the appendix has burst and Jed is getting weaker. The appendix burst "about" 7am yesterday. At 16h00 Dr does surgery... It is explained that as Jed has no immune system, low blood counts and his lung has collapsed from septic shock the risk is huge. 17h06 Jed is out of surgery and dr sneaks me into recovery, Jed is alive..... ICU for the night. (I confirm, it is possible to sleep standing up alert and with your eyes open)!
Saturday - I nag to move to oncology ward as ICU staff have NOTHING on our onco ladies....I'm missing my nursing team who know me (my stress levels) and my demands (each teaspoon of medication is explained to me). In onco we hug and tuck each other in at night. Jed's infection marker climbs after surgery.
Sunday - Lungs are weak, weak, Jed is breathing with the help of oxygen... He is suffering and the pain is breaking me. Infection marker 199 - Jed is limp, weak and sick. Sicker than I have ever seen him (including after both brain surgeries).
I picture, those huge big balls that knock the old building down.... keeps banging and banging at me (i'm the old building) - I can't run, I can stop it, I can't move - just gotta take each blow until it stops... I wonder if my core foundation is breaking through this!
Monday - after praying and begging everyone to pray his infection marker is at 78 - this drop is beyond the doctor (thanks God).... Jed starts to show signs of breathing patterns improving (no oxygen at times). The drains (in tummy) are still full of fluid and today marks day 4 of Jed eating and drinking nothing - yip he is getting fluid through the drip but as we all know Jed does not have any fat to lose!!!! The "banging lady" (Physio) shows no mercy - bang bang bang!
Chemo is out of the question - week 5 no chemo (cancer.....)
And that is were we are at this moment! Somehow brain cancer was just not enough for Jed's body... Burst Appendix which is TOTALLY unrelated to cancer is what is currently hurting my little hero. It just goes to show we are NEVER sure of what lays around the corner... I never ever believed Jed's appendix was in trouble. The doctor has confirmed that Jeddy was in excruciating pain and still is sore (however managed better now)
Please also include Reef (prep for Bone Marrow Transplant underway - cancer marker is at about 3%) and Jordi (MRI coming up on 21 September) in your prayers. Now add Johnathan (our new 16 year old), baby Myburgh (our new 1 month old), Siya, Lefa, Darrian, Erich (MRI scan on Wed), Tabs, Jaryd (Ewings Sarcoma - prayer for Belinda his wonderful mommy who is not dealing with the news well), Luther's mom and dad, Connor (ANOTHER new child) and all the children with cancer.
PLEASE also remember that September is Childhood Cancer Awareness Month - Gold Ribbon - please wear a piece of gold ribbon for my baby his friends.
Please please pray that God fixes Jed and thank you for the love and messages!
Love from
Broken Bon x
Ray bought my computer quick so I could send out an e-mail. Even my fingers hurt as I type.
Briefly
Thurs 26 - Jed complains of pain in his tummy and head at 2h20 am. 4am we leave for Unitas. at 6am Jed's fever starts to climb, he has a seizure with a temp 39.5 - his body goes into septic shock. He hallucinates seeing fairies, popcorn, ants and a golden bridge... the "blue team" are called to Jed's room. Sister Hannie and Sister Elize work with extreme speed with the "blue team".... I watch as Jed's starts to slip away from me.... Doctor believes (as we all do, it is brain related), bleeding on the brain, fluid blockage - due to temp.... meningitis.... the panic doesn't stop - (I just vomit and vomit... I'm helpless.... useless....) More blood tests, x-rays, CT scan of brain.... nothing is confirmed.
Friday - no change, Jed's condition gets worse. He is screaming and non stop in pain. Doc decides to look for infection cause again (ruling out the brain and port needle), sonor done - appendix has a cystic formation, X-ray - confirms there is a problem - CT scan confirms the appendix has burst and Jed is getting weaker. The appendix burst "about" 7am yesterday. At 16h00 Dr does surgery... It is explained that as Jed has no immune system, low blood counts and his lung has collapsed from septic shock the risk is huge. 17h06 Jed is out of surgery and dr sneaks me into recovery, Jed is alive..... ICU for the night. (I confirm, it is possible to sleep standing up alert and with your eyes open)!
Saturday - I nag to move to oncology ward as ICU staff have NOTHING on our onco ladies....I'm missing my nursing team who know me (my stress levels) and my demands (each teaspoon of medication is explained to me). In onco we hug and tuck each other in at night. Jed's infection marker climbs after surgery.
Sunday - Lungs are weak, weak, Jed is breathing with the help of oxygen... He is suffering and the pain is breaking me. Infection marker 199 - Jed is limp, weak and sick. Sicker than I have ever seen him (including after both brain surgeries).
I picture, those huge big balls that knock the old building down.... keeps banging and banging at me (i'm the old building) - I can't run, I can stop it, I can't move - just gotta take each blow until it stops... I wonder if my core foundation is breaking through this!
Monday - after praying and begging everyone to pray his infection marker is at 78 - this drop is beyond the doctor (thanks God).... Jed starts to show signs of breathing patterns improving (no oxygen at times). The drains (in tummy) are still full of fluid and today marks day 4 of Jed eating and drinking nothing - yip he is getting fluid through the drip but as we all know Jed does not have any fat to lose!!!! The "banging lady" (Physio) shows no mercy - bang bang bang!
Chemo is out of the question - week 5 no chemo (cancer.....)
And that is were we are at this moment! Somehow brain cancer was just not enough for Jed's body... Burst Appendix which is TOTALLY unrelated to cancer is what is currently hurting my little hero. It just goes to show we are NEVER sure of what lays around the corner... I never ever believed Jed's appendix was in trouble. The doctor has confirmed that Jeddy was in excruciating pain and still is sore (however managed better now)
Please also include Reef (prep for Bone Marrow Transplant underway - cancer marker is at about 3%) and Jordi (MRI coming up on 21 September) in your prayers. Now add Johnathan (our new 16 year old), baby Myburgh (our new 1 month old), Siya, Lefa, Darrian, Erich (MRI scan on Wed), Tabs, Jaryd (Ewings Sarcoma - prayer for Belinda his wonderful mommy who is not dealing with the news well), Luther's mom and dad, Connor (ANOTHER new child) and all the children with cancer.
PLEASE also remember that September is Childhood Cancer Awareness Month - Gold Ribbon - please wear a piece of gold ribbon for my baby his friends.
Please please pray that God fixes Jed and thank you for the love and messages!
Love from
Broken Bon x
Whilst reading your story I cannot stop myself from crying. My heart goes out to you and your family and I cannot imagine what you are going through. My little boy is 2 years old and I take my hat off to you. I do not know if I would be able to cope. I am very interested in supporting you the raising funds for the little ones. Please let me know the cost of the shirts and I will try and see what I can arrange from my side.
ReplyDeleteI pray and believe that things can only get better. And that the Lord will give you strength.
Michelle
083 309 2000
Still smiling in the face of adversity... he is an insperation to us all!
ReplyDelete