Thursday, December 31, 2015

Standing up - Thursday, December 31, 2015

Thursday, December 31, 2015...42 days in the hospital

BJ had another quiet day. He is still pretty sore on his right side, but it is getting better. His Total bilirubin was down again today. His highest Total bilirubin was 7.3 on the 28th (the day before the ERCP). Today, it was 2.8. Normal is between 0.3 and 1.2. He wasn't as nauseated today and his fevers are down. The stent is working well.

Our goal today was to get him standing. A physical therapist came to work with BJ this afternoon. She brought a tool to help him stand up with confidence, not allow his knees to buckle, and allow him to sit back down when he needed to sit. BJ sat on the side of his bed for a while, and then pulled up his own weight and stood up straight. He pulled himself to a standing position twice. He weighs 142 pounds now, which is about 20 pounds less than he was at the #KeepPounding5k in May 2015 (2 weeks before his relapse). It was awesome to see him stand. We'll keep working on that through the weekend, so that hopefully by next week he'll be able to take a short walk.

BJ was still sitting on the side of his bed after the PT left, and in walked a volunteer and her dog. Perfect timing! Katie is a Golden-doodle. It was her first solo visit to this hospital and she was as sweet as could be. Dogs are definitely good for the soul.

Carly decorated BJ's room for New Year's eve. The window cling makes us feel like we're in Times Square! Thanks to my absolutely incredible Medic co-workers/friends, Allison and Jessica, who dropped off some festive supplies while I was taking a much needed nap yesterday. I love and miss you guys!!!

Happy New Year everyone! "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Wednesday, December 30, 2015

Moyen Pet Therapy - Wednesday, December 30, 2015

Wednesday, December 30, 2015...41 days in the hospital

It was a pretty quiet day for BJ. He had an abdominal x-ray to check the stent placement due to some pain on his right side since the procedure. He wasn't as nauseated today as yesterday, and his bilirubin levels are coming down as well. His white blood cell count is still less than 0.1. Hopefully his bone marrow will start to produce some white blood cells within the next 10 days. We're on day 21 since he started the clofarabine/mitoxantrone chemotherapy.

We had a visit from pet therapy today. Sadie is one of our favorites, because she reminds us of our dogs. She's a Moyen, a medium-sized poodle. Our dogs, Charlie Brown and Lucy are miniature poodles. Sadie was able to get a smile out of BJ. It was a short visit because BJ started to feel a little nauseated again.

Thank you for your continued prayers for BJ, and the other kids fighting cancer.

Tuesday, December 29, 2015

ERCP Surgery - Tuesday, December 29, 2015

Tuesday, December 29, 2015...40 days in the hospital

Not much sleep and an early wake up and transport down to the Endoscopy unit in the adult side of the hospital made a rough start to the day. BJ had a platelet transfusion around 5am, and then another unit was hung to drip during the procedure. The ERCP went well. The GI doc put in a stent in his common bile duct, but did not remove any stones because BJ's platelet count was not high enough (never got to 50k) to put a small incision into the muscle to sweep out stones. The contrast injected into the duct did pass up into the gallbladder, which showed that the smaller ducts were not completely blocked. After the stent was placed, the duct did drain some 'gravel' and sludge. We do know that his gallbladder will need to be removed, but this bought some time. So overall, this was good news.

When BJ woke up after the procedure, he was extremely nauseated. The area around his port was also very sore, which is likely due to the way he was positioned during the procedure. The nausea continued most of the afternoon, and was worse when he tried to sit up. He received another unit of platelets in the recovery room, and after getting back to his room, he also received 2 units of blood. His hemoglobin had fallen to 6.4. He needs to stay around 9 to avoid symptoms of low hemoglobin. The extra blood should help him feel better. He ate some crackers earlier which is always a good sign!

Thank you for all of your continued prayers!! Just like BJ says...The prayers are working.

Monday, December 28, 2015

Obstructed bile duct - Monday, December 28, 2015

Monday, December 28, 2015...39 days in the hospital

Rough, overwhelming day. More adversity to add to his expanding list of challenges to overcome.

BJ spiked another fever late last night, and again this morning. All of the daily blood cultures remain negative since Christmas day. It seems that the fevers are now coming from something other than the infection in his central line. He is also still battling nausea, and even though several of his meds could cause that, it seems unlikely. This morning, he had an ultrasound on his abdomen, which showed that his gallbladder looks worse than it did on his Dec. 7th ultrasound. His common bile duct is obstructed, which is causing backup into his liver, raising his bilirubin levels. In just the past 2 days, his skin and eyes are obviously more jaundiced. If any normally healthy person's gallbladder looked like his does, it would be a no-brainer to remove it. However, BJ has no immune system, no neutrophils to help with healing and to help fight infection. Something has to be done sooner than later to prevent damage to his liver, so he will be having an ERCP under anesthesia tomorrow morning. Endoscopic retrograde cholangio-pancreatography (ERCP) is a procedure, done through an endoscope, that looks at the bile ducts. The GI doctor should be able to remove any stones and put in a stent to hold the duct open for other stones and sludge to pass through. The complication with doing this procedure is that BJ's platelet count remains low. He received a 2-unit transfusion of platelets today, and his platelet count went from 11k to 22k. It needs to be above 50k to have the procedure. He will have another transfusion around 5am tomorrow (Tuesday), so that they will have time to run more labs before the procedure. If it doesn't push his count up enough, he will have a platelet drip while having the ERCP.

To end on good news, BJ also had a CT scan on his chest today, to check the status of the pneumonia caused by the fungal infection he's had since August this year. This was done today to rule out a worsening fungal infection as the cause of the fevers. He has continued to take anti-fungal medication (voriconazole), and have regular medication level checks. Today's CT scan was not done with contrast, however, his lungs look better than the last CT scan with contrast. This report made us very happy, as that is a big wild card, and now something that we can rest easy. A worsened fungal infection would even prevent him from being able to have a bone marrow transplant.

Sunday, December 27, 2015

A better day - Sunday, December 27, 2015

Sunday, December 27, 2015...38 days in the hospital

Today was a better day! BJ has felt better than yesterday. His fevers are lower today. The infection he had in his central line was coagulase-negative staphylococci. This is a common bacteria on skin, but causes serious infections in someone who has a compromised immune system. He'll continue IV antibiotics for another week. The pain in his feet is down to a 6 on the pain scale. He's still on oxygen, but it's more of a requirement when he is sleeping. His hemoglobin and platelets remained high enough today to avoid any transfusions. He has attempted to eat more today, so that he can avoid being put back on IV nutrition (TPN). His nausea is more under control than it has been lately, so now it will be easier for him to try to eat.

Now...that game. Yes, BJ watched the Carolina Panthers game. We aren't fair weather fans. We're proud of our hometown team! They are a great group of talent and class. Cam, Luuuuke, Gano, Olsen, TD, Oher, Norman...come visit BJ anytime! :)

Saturday, December 26, 2015

Fever! - Saturday, December 26, 2015

Saturday, December 26, 2015...37 days in the hospital

BJ is still having fevers spike every few hours. He's back on oxygen at 2 liters. He was complaining of a headache last night, and this morning's labs showed his hemoglobin at 7, so he received a 2-unit blood transfusion today. He's also getting a unit of platelets tonight. His feet seem to be marginally better. He's still fighting off nausea too, and it seems that when his fever spikes, so does the nausea. He was switched from Zofran to Kytril yesterday, but Kytril didn't work for him. He's back to scheduled Zofran for nausea. We need his nausea to get under control so he can eat. He is hungry, but with nausea, the absence of taste buds, and the fact that he hasn't really eaten anything substantial in over a month is a real challenge to finding something that he wants to eat. Right now, the magic combination is Lance's Cream Cheese and Chives crackers with Lemon-lime Gatorade. The awesome staff (Lamika!) in Food and Nutrition here at LCH will get most anything that BJ wants to eat, but those crackers are just special enough that the hospital doesn't have them.

A physical therapist came to work with BJ today. He did a great job tolerating the muscle stretches and is very motivated to work with them. He has lost a lot of weight, and is not happy seeing how thin his legs are now. I believe he's all set on having his team of SEALs help him get back in shape when he's ready.

Hoping for a great night, full of sleep and no fevers!

Christmas - Friday, December 25, 2015...36 days in the hospital

Friday, December 25, 2015...36 days in the hospital

Christmas was beautiful. Two weeks after doctors were not at all hopeful, BJ is proving them wrong and overall is getting better every day. We enjoyed spending time with each other today, and didn't mind at all being here in the hospital. We hope your Christmas was just as special.

Last night BJ started feeling rough...nauseated, hot and then chills, and then spiked a fever of 102.6. He was given Tylenol, started 2 IV antibiotics and then blood was drawn from his port to send for blood cultures. He was awake off and on all night, and the fever stayed away until around 3am. This afternoon, his fever spiked again to 103.3, and we were told that the blood culture from yesterday had come back positive for bacteria. He has an infection in his central line. We should find out tomorrow what type of bacteria grew, and then in another day, should find out which IV antibiotic is best. His platelet count was low again today, so he had a transfusion early this morning. He's getting tired of the constant barrage of challenges, but as each one comes, we talk about it, and he pushes through again. My fierce warrior...he is never out of the fight.

Thursday, December 24, 2015

He is that man

"In times of uncertainty there is a special breed of warrior, a common man with an uncommon desire to succeed. His character is forged by adversity.
I am that man.
The ability to control my emotions and my actions, regardless of circumstance, sets me apart from other men. Uncompromising integrity is my standard. My character and honor are steadfast. My word is my bond. I lead by example in all situations.
I will never quit.
I persevere and thrive on adversity.
If knocked down, I will get back up, every time.
I will draw on every remaining ounce of strength to accomplish my mission.
I am never out of the fight.
I will not fail."

Wednesday, December 23, 2015... 34 days in the hospital

Wednesday, December 23, 2015... 34 days in the hospital

BJ has been struggling today with the neuropathy in his feet. Yesterday seemed like a better day, but today was rough again. His white blood cell count is still less than 0.1 and he needed a unit of platelets today. He slept most of this evening, which is better than being awake and dealing with the pain.

Still hoping for a better tomorrow!

Great big thank yous to Pacific Union Financial in Charlotte for making Christmas extra special!! Big thanks to everyone over at Lake Norman Gymnastics for the big box of gifts, North Lincoln High School, North Lincoln Middle School and Rock Springs Elementary, for all your love and support. Thank you to Webbs Chapel UMC, Fairfield Forest Church, the family of Diane Bennett, the Cabarrus County Sheriff's office, and my awesome co-workers at Medic. Thank you Chris's CREW Childhood Cancer Foundation, and to the Navy SEAL community who have accepted BJ as a brother. A huge thank you to everyone who has sent cards, gifts, and to everyone who prays for BJ every day. We are continuously lifted up, and pull strength from your prayers and support. Thank you all so very much for showing us so much love!!!

Tuesday, December 22, 2015

Tuesday, December 22, 2015...33rd day in the hospital

Tuesday, December 22, 2015...33rd day in the hospital.

BJ had a better day. He's still in pain, but it seems to have subsided some. The increased dose of Methadone helped him sleep better last night. Carly and I worked on decorating the room today. I'll post some pictures tomorrow. We had fun with the cards and snowflakes made by kids in Lincoln County schools.

More cards arrived today, and there were several gifts dropped off as well. We are completely astounded by the generosity. 

Monday, December 21, 2015....32nd day in the hospital

Monday, December 21, 2015....32nd day in the hospital

BJ is still struggling with the neuropathic foot pain off and on all day and night. They increased his dose of Methadone and started Cymbalta, which has helped other kids with this type of pain. He also received another dose of Neupogen tonight.

A larger room opened up so Carly and I moved everything tonight and tried to organize as much as possible. Tomorrow we'll make this room as festive as we can!!!

To send cards, etc...
BJ Correll, room 11006T
C/o Levine Children's Hospital
1000 Blythe Blvd
Charlotte NC 28203

Sunday, December 20, 2015

Sunday, December 20, 2015... 31st day in the hospital

Sunday, December 20, 2015... 31st day in the hospital

BJ continues to have excruciating neuropathic pain in his feet, but found some time to smile. He received a blood and platelet transfusion today, and the increase in his hemoglobin helped make him feel a little better.

Saturday, December 19, 2015

Saturday, December 19, 2015...30th day in the hospital

Saturday, December 19, 2015...30th day in the hospital

Last night was pretty rough for BJ. He had so much pain in his feet, it was completely unbearable. I had a discussion with the night time resident, and we came to an understanding that something needed to be done. Additional numbing cream was applied after the lidocaine patches wore off after 6 hours. This morning, the doctor that was on rounds decided to try some of the alternatives that the Pain Specialist had suggested. So, BJ had a dose of methodone this afternoon to control the neuropathic pain in his feet. He has been sleeping all afternoon, and is still asleep. It's been good for the pain, but the dose was definitely a little too much. His white blood cell count is still less than 0.1 today. He had his 3rd dose of Neupogen tonight, which helps stimulate his bone marrow to begin making white blood cells again.

Thank you for sending him Christmas cards! Handfuls have arrived here by mail, and more handmade cards from students in Lincoln County School were brought in a huge basket. I read a couple stacks to him this morning. There are a lot of artists in our hometown!