Silent acid reflux~ Prilosec compound working!

photo by Juliana Melnik

Started Prilosec compound yesterday for John. Evidently he has silent acid reflux and it is probably why we have been having pain associated with eating. After one day, John is a new man. We are so happy one of his problems is finely being resolved. 

Still waiting to hear from CHOP about scheduling his ERCP procedure. Wish we didn't have to do it, but we do.

BTW, Julie insisted that I give her a byline for the photo above or I couldn't use it.

Looks like we may be going to CHOP...

Well, it looks like we may have to go to CHOP in Philly for John's procedure. Still finding out all the details, but our insurance says the only way we could have clearance to go to JHH is if CHOP says they cannot do the procedure. Not sure what to think of all this. I think I'm going to choose NOT to think for a while.

I know this picture is sideways, but we are talking on the phone. John is practicing his breathy Hhhi. Julie may have taken this photo, not sure.

Anyway, still scheduled for Friday, but no clearance from insurance yet. May have to cancel and start all over.

Please keep us in your prayers.

Update...

Well, we have John's ERCP scheduled with JHH, but now our insurance is not accepted there and our insurance company says the procedure can be done at CHOP. It cannot. I guess we are in a holding pattern until things get resolved. Oh the joys of our healthcare system. 

Good ♡ news for John

John got great news from his cardiologist yesterday, his VSD is closing up on it own! We don't have to have a check up for another 18 months. We are soo happy.

Trying to schedule John's ERCP w/ Johns Hopkins. Insurance is not cooperating yet... More to follow later this week.

This pictorial was taken by Juliana with her new camera...

Nana & Pop-pop gave it to Julie for Christmas. She has taken over 200 photos with it! ugh. She's having a blast.

Dr. Patrick Okolo

Click on Dr. Patrick Okolo above and the link below will open up for you to view an interview with Dr. Okolo.
www.insidermedicine.com/archives/In_the_Spotlight_-_Dr_Patrick_Okolo_MD_MPH_1942.aspx

Road trip to Johns Hopkins coming up...

Looks like we will be visiting Johns Hopkins for the diagnostic ERCP that John needs. Dr. Furuya & Dr. Dunn of AI du Pont hospital have consulted w/ the ERCP specialist, Dr. Okolo from Johns Hopkins & they believe that John should have the procedure soon to figure out exactly what needs to be done to correct his common bile duct.

John is feeling fine, despite a head cold we picked up somewhere. No pain. His liver enzymes have returned to normal. His liver is not being damaged at this point and he does NOT have pancreatitis. Pancreatitis is probably the biggest risk of this diagnostic procedure. The skill of the Dr. preforming the test is directly related to the risk of getting pancreatitis.There will be a pediatric anethesia team for John. This will be what we will wait for to schedule the procedure.

BTW, the Celiac & cancer screens were negative. Yeah! Will post more as it comes to me. John will be in the best of care as far as I can tell.

Thank you for all your prayers and well wishes. We really do appreciate it all.

Test results...more imaging needed.

Well, John's MRCP results were explained to me & John needs to have more imaging done to figure out what to do next. The next procedure is an ERCP:

ERCP (Endoscopic Retrograde Cholangiopancreatography)

The digestive system

Endoscopic retrograde cholangiopancreatography (en-doh-SKAH-pik REH-troh-grayd koh-LAN-jee-oh-PANG-kree-uh-TAH-gruh-fee) (ERCP) enables the physician to diagnose problems in the liver, gallbladder, bile ducts, and pancreas. The liver is a large organ that, among other things, makes a liquid called bile that helps with digestion. The gallbladder is a small, pear-shaped organ that stores bile until it is needed for digestion. The bile ducts are tubes that carry bile from the liver to the gallbladder and small intestine. These ducts are sometimes called the biliary tree. The pancreas is a large gland that produces chemicals that help with digestion and hormones such as insulin.
ERCP is used primarily to diagnose and treat conditions of the bile ducts, including gallstones, inflammatory strictures (scars), leaks (from trauma and surgery), and cancer. ERCP combines the use of x rays and an endoscope, which is a long, flexible, lighted tube. Through the endoscope, the physician can see the inside of the stomach and duodenum, and inject dyes into the ducts in the biliary tree and pancreas so they can be seen on x rays.
For the procedure, you will lie on your left side on an examining table in an x-ray room. You will be given medication to help numb the back of your throat and a sedative to help you relax during the exam. You will swallow the endoscope, and the physician will then guide the scope through your esophagus, stomach, and duodenum until it reaches the spot where the ducts of the biliary tree and pancreas open into the duodenum. At this time, you will be turned to lie flat on your stomach, and the physician will pass a small plastic tube through the scope. Through the tube, the physician will inject a dye into the ducts to make them show up clearly on x rays. X rays are taken as soon as the dye is injected.
If the exam shows a gallstone or narrowing of the ducts, the physician can insert instruments into the scope to remove or relieve the obstruction. Also, tissue samples (biopsy) can be taken for further testing.
Possible complications of ERCP include pancreatitis (inflammation of the pancreas), infection, bleeding, and perforation of the duodenum. Except for pancreatitis, such problems are uncommon. You may have tenderness or a lump where the sedative was injected, but that should go away in a few days.
ERCP takes 30 minutes to 2 hours. You may have some discomfort when the physician blows air into the duodenum and injects the dye into the ducts. However, the pain medicine and sedative should keep you from feeling too much discomfort. After the procedure, you will need to stay at the hospital for 1 to 2 hours until the sedative wears off. The physician will make sure you do not have signs of complications before you leave. If any kind of treatment is done during ERCP, such as removing a gallstone, you may need to stay in the hospital overnight.

Preparation

Your stomach and duodenum must be empty for the procedure to be accurate and safe. You will not be able to eat or drink anything after midnight the night before the procedure, or for 6 to 8 hours beforehand, depending on the time of your procedure. Also, the physician will need to know whether you have any allergies, especially to iodine, which is in the dye. You must also arrange for someone to take you home—you will not be allowed to drive because of the sedatives. The physician may give you other special instructions.

John has an abnormality in his common bile duct that is partially obstructing the flow of bile to his gallbladder. This can cause liver damage if it is not corrected.We are waiting to hear which Dr. will be willing to do the procedure. It will have to be done at either Jefferson or Hopkins. The Dr. at Jefferson is reviewing all of John's tests now. There are no pediatric surgeons who do this procedure. They may be able to correct the problem during this procedure. 


We will do more blood tests this week to make sure John's liver is still functioning well. And that the elevated levels he had before the holidays were just showing a virus. 


If anyone you know has had this procedure done, have them contact me. I'm a little overwhelmed, but grateful we found this before it became a bigger problem. They should be able to correct this for him.


Prayers for John and his doctors.