Sorry that this so late - it's been a long day!
Yesterday afternoon I got a call from the ENT specialist's office advising me that I had an appointment at 11:00a. They said I had to come one and fill out paperwork for the surgery - but it had to be done in office BEFORE the surgery. I was supposed to be going to a school with my boss today so I asked if it was at all flexible. They said it had to be at 11:00. I told them I would work something out and we'd be there. Right after I hung up the Ped Sedation Coordinator @ the hospital called me and said they couldn't schedule the CT and surgery on the same day so we had to come to the hospital for the CT today as well. They said the only opening they had was at 8:00 a so I had to get there at 7 to get started. I talked to my boss and he said he would handle the delivery at the school without me. I felt awful for having to take off of work one more time but he was BEYOND understanding....again.
My sister-in-law and I headed to the hospital this morning for the CT Scan. Jeremiah wasn't able to get off work again to go so my friend Tiffany offered to watch Cheyenne's kids so she could go with me. (Yes, Tiffany & Cheyenne are amazing!! I mean, Tiffany took on two more kids - and early in the morning too; but, Cheyenne got up and got her kids out the door super-early just so she could be with me!!! I'm beyond blessed.)
JD did great again! The sedation team got him hooked up to the IV and we got him down to Radiology and got him set for the CT Scan. He was only out for about 10 minutes or so and the Child Life Specialist came and got us. After a few minutes JD started waking up, we got him back in his PJs and we were off!
We got breakfast and JD and I headed back to work. We got to the ENT office at 2:00p (yes - I was late) and were taken back to a room almost immediately. JD had fallen asleep on the way to the ENT office so when we got there I had to try and keep him asleep. The poor kid was so messed up from the sedation meds still! I carried him from the car to the office then the exam room and he stayed completely knocked out. The doctor came in to examine him a final time and siad that he's pretty sure the masses are what is called Atypical Mycobacterial Infection. The doctor's definition is "A very nice, nice, nice cousin to Tuberculosis". (I'm sure your reaction was about the same as mine! *What in the world??!?*) [I Googled it and got this:: Atypical mycobacterial infections are infections caused by several types of mycobacteria similar to the germ that causes tuberculosis. M. avium-intracellulare, M. kansasii, and M. scrofulaceum may cause inflammation of the lymph nodes in otherwise healthy young children.] It's something that can be found in many places in the environment: tap water, fresh and ocean water, milk, bird droppings, soil, and house dust. The good thing is that there is no evidence that it's contagious - YAY!!
So - the remedy! These are not solid enough for them to open him up and cut them out. Instead they have to cut the spots open and scrape the liquid/tissue out. The doctor then showed me the CT Scan images and had some not-so-good news. There's not just two spots - there are FOUR! I wasn't ready for that (Of course, I haven't been ready for much of this have I?!) He has the two on the left that we have known about, but he also has one on the right and then one ... on the back of his throat. (Not ready for that either!) So - they have to scrape the two on the left, the one on the back of his throat and attempt to get the one on the right. They said it may be too deep that they can't get to it but they will at least try. The body is supposed to take care of this itself but for some reason JD's didn't. They said that it may come back at some point but hopefully, by getting rid of the bulk of the probelm the body will be able to fight off the rest of it. This is something that doesn't react well to meds so we will see. For now, we just have to hope that they can get in and get done the job they need to!
On top of all this "wonderful" good news they doctor said that he is concerned about the swelling in JD's ears. His sinuses are completely blocked and his ears are filled with fluid. The ENT doctor said that the surgery will cause MORE swelling in his throat and ears and he is worried about the pressure. He said that the swelling can cause hearing damage or other damage to his ears. To avoid this he is going to put tubes in JD's ears as well. (I think this was the biggest unexpected news for me.) I wasn't thrilled about the news but understand why the doctor is choosing to do it. Our appointment at 1:45p didn't end until 5:30p. I then had to go back to work and make up some hours. Jeremiah and his dad had to do some work at my bosses house that they didn't finish until after 8:00p. We got home around 9:00p and are trying to get prepped for tomorrow!
SOOOOO.....tomorrow we have to be at the hospital at 5:15a and surgery will start at 7:30a. We are not sure how long it will take at this point. We may have to stay overnight for them to monitor JD - that depends on how well he does during/after the surgery.
I cannot tell you at this point how much we are coveting your prayers. Tomorrow is going to be such a long, hard day for us in so many ways. Pray for us, JD, the doctors - all of it! This is going to be a huge ordeal for all of us! Thank you so very much for your love and support! It means so much to us.
In His Hands-
Jeremiah, Crista, and JD