Frustration and Sadness

I apologize for not updating and/or informing people of our current status. This week has been an emotional week for our family and it's been hard just keeping it together. I'll try to update you on what's happened and where we currently are.

As you know from the previous posts, we had Jake tested back in October and thought at the time he had celiac disease. The actual small bowel biopsy came back negative, but with his symptoms and our family history, our pediatric GI doctor told us she still believed he had celiac and we put him on a gluten-free diet. He vomited a couple more times during October but we assumed his gut was still healing.
Fast-forward to November 15th. Jake started vomiting again that day and hasn't stopped since. In 8 days, he's vomited 52 times. Some days are worse than others. The most is 12 times in one day and the least is 1 time. We started more testing on Friday, Nov. 18th, with an abdominal ultrasound which was normal.
Since we had no improvement over the weekend, Jake had a brain CT on Nov. 21. We would not get the results until the next morning.

That night we took Jake in to St. Mark's Hospital ER to get him some IV fluids and check his labs. Thank goodness the labs looked okay, so after filling up with fluids, we went home to sleep.
On Tuesday morning, while driving to work, I got a horrific phone call. The doctor told me that the CT showed a 1.6 cm lytic lesion on his skull. Now remember, I work in a cancer clinic, so when I hear lytic lesion, I know that cancer will eat at the bone and cause these lytic lesions! The next 3-4 hours felt like the worst in my entire life!! I have never been so scared, sick and shocked.

My kind co-worker/RN, Kathy, was very helpful and got a brain MRI scheduled within 2 hours. The doctor I work for, Dr. Tudor, reviewed the CT and calmed my nerves enough to make it back home to pick up Jake and get him to the clinic. I sat and watched the MRI through the window, still feeling numb and in shock. The tech showed me the area of the brain we were focusing on, and there was an obvious abnormality.
Dr. Tudor was able to call me, before I was even home, and tell me that there was no lytic lesion (BEST news in the entire world!!!!) but there was a "dural ectasia, bowing the inner table of the skull." These abnormalities are usually seen with specific diseases and not seen in the brain, usually the lower spinal cord. Dr. Tudor consulted with a local neurosurgeon that recommended we get an angiogram asap because this was likely caused by a carotid cavernous sinus fistula. (Yeah, yeah, I know. Too many medical terms).

So off again, Joe and I drove Jake to Primary Children's Hospital in Salt Lake. We went in through the ER and their radiologists reviewed the CT and brain MRI that had been put on a disc. Low and behold, they felt it was normal. They did not believe there were either of the issues, which the previous radiologists saw. Huh?? Good news, I realize, but what explains the vomiting? We left the hospital late last night and were told that a neurosurgeon would review the scans again early this morning. We never received confirmation that it was done. We are just left with still more questions than answers.

Basically, Primary Children's said they believe he has cyclic vomiting syndrome and to keep following with his pediatric GI doc. They consulted with our GI doc on the phone and she told them he does not present as a typical cyclic vomiting syndrome, but they were not convinced and said he was just "atypical." Though this may be the case, it was frustrating that after just a few hours looking at him and really no assessment, they gave us that info and sent him on his way. Not impressed.

Today I tried to get a neurosurgeon from Provo, who we work with at our cancer clinic, to review the films from the MRI and ensure that he believes the same thing. Unfortunately, with the holiday weekend, there were no docs available. I still feel I need a third opinion to confirm one of the other 2 opinions. We can't afford to be missing things.

So, at this point, I have a sick, dizzy, vomiting child at home that doesn't understand why they can't figure out what's wrong. We will see his pediatric GI doc on Monday, Nov. 28, but until then, their answer was to give Jake a prescription for 5 mg Valium, to get him by. Just so you know....in my opinion, that is way too much Valium for a little boy. He will be knocked flat on his butt with that. I filled the script, but haven't given it yet. We'll see how bad he gets. At least I can cut the dose down if I get desperate and let him get some sleep.

*Side note, Jake just vomited while I was typing this. My poor little guy!

I do not want to seem ungrateful because I am THRILLED beyond belief that this is NOT cancer. I'm just so frustrated with the medical field and bad opinions and, and, and.... I will be looking into a tutor next week, as Jake has missed so much school, I don't know how he will ever catch up on 5th grade. This has been going on, intermittently, since August. I've actually lost track of the missed days. Mostly, I just want my little boy to feel well and be able to play with friends and go to school.

We will try to keep you updated. As it stands, there will be no news until after Monday's appointment.

Oh, and last, but not least, it would be horrible to ignore all the wonderful people who have been so kind. My co-workers and Dr. Tudor have been amazing. Dr. Tudor spent so much time reviewing labs, scans, making phone calls and calming my nerves. My co-workers have filled in for me during a hellacious week! And even though I know they were miserable, they never even hinted a complaint. The primary presidency brought over a gift bag with books, cross-word puzzles, food, etc, to keep Jake busy during his hospital visits and testing. And the many friends and family that have texted and tried to call. I am sorry I could not reply to all of the calls and texts. We love you all and are so grateful for your prayers and compassion.