Home

We are home now, and trying to get back to normal. It is still frustrating not to have real answers. The preliminary results of the liver biopsy indicate that they did not find what they were looking for. We are still in the dark. Please keep praying. I will keep you updated.

Good News

We have good news. The decision was made last night to have Arvil take an oral steriod that we can do at home rather than a heavy IV treatment here at the hospital. He is also going to be taking an iron supplement (which apparently tastes nasty and can be spit across the room) to help treat anemia. The bottom line is that we might be able to head home today.

Thank you all for the prayers, love, and well-wishing. We know that through faith and good fortune, we should soon get to the bottom of Arvil's troubles, and be able to prevent the strokes and seizures that he has had to endure.

It will be good to come home instead of living at the hospital.

We are in Salt Lake At PCMC. Arvil is in his room sleeping off sedation following the liver biopsy. I have not yet heard anything about biopsy findings. We will let you know. He will also be starting an anabolic steriod treatment soon.

We are in room 3017. We can be reached at 801-662-3017. The hospital front desk is 801-662-1000. Callie will be here pretty much full time, I will probably be back and forth between here and Cache Valley as much as I can for work and such.

Back to Salt Lake

We are returning to Salt Lake City and Primary Children's Medical Center on Tuesday Morning. Arvil will be having a liver biopsy done, and then will begin steroid treatments to counteract the inflammatory cerebral vasculitis. We will keep you all up to date on our progress. We will likely be in Salt Lake at the Hospital for the remainder of the week. We appreciate all your thoughts, prayers, and support at this trying time for our family.

ESCAPED!

I guess I should have made this post earlier, but I did not think of the potential consequences.

Aunt Marilynn, I am very sorry that you showed up at the hospital after we had run away.

We left last night when we realized that we would not have the opportunity to have Arvil's liver biopsy done until at least Monday. We hate hospitals and decided to spend a night and day at home.

(a much nicer place to hang out than the one pictured in the last post)


We are not sure if we will be back on Monday or Tuesday. We were rather frustrated because we had not fed Arvil for over six hours on Saturday to be finally told that they would not be able to do the procedure until at least Monday. We have been on the phone this afternoon trying to pin them down on times. We are hoping to have commitment before we go back. We would like to get treatment started rather than keep putting it off, but the doctors would like to confirm the diagnosis with the liver biopsy, but we can't seem to get an operating room or something. So that is where we are at.

We don't think hospitals are nice places just to hang out. But we will be back. Meanwhile we have been watching conference and researching granuloma disorders.

So nobody else brave the conference Sunday traffic, the maze that is the hospital, and the strict chinese nurse to visit us until we are back at the Hospital.

Just a note, Arvil has been much happier at home than in the hospital. He was even very nice in the car last night, which is saying something.

Back at Primary Children's Medical Center

We're back.



Not necessarilary where we want to be. But here we are, back at Primary Children's MC.

Here is the scoop:

We came yesterday for a scheduled MRI. The MRI showed definite signs of progressing vasculitis in Arvil's brain. To translate, the blood vessels in his brain are constricted due to inflammation of the blood vessel walls. As a consequence of the vasculitis, certain areas of the brain are not getting the nutrition that they need. The MRI images that we saw show that Arvil's brain has actually begun to shrink because of this, and that he has had at least one additional stroke.

In addition to this information, Dr. Benedict, our neurologist, also informed us that she had just recieved results of a genetics test that had been ordered back in January. Arvil tests positive for the genetic defect associated with Krohn's disease and Blau syndrome. The current theory is that Arvil is exhibiting a "non-classic" presentation of Blau Syndrome, a rare auto-immune disorder that typically exhibits in childhood. It usually presents with eye disorders, rashes and arthritic joints. It does however, cause vascular inflammation and some liver problems which, together with the gene, point toward Blau syndrome.

We were admitted to the hospital to begin treatment for vasculitis, primarily a steriod regimen. We have not yet done this because the rheumatoligist on the case, Dr. Bohnsack wanted a sample of liver tissue for biopsy. We had hoped that the gastroenterologist, Dr. Guthrie could take care of that procedure today. They cannot. So we are waiting. We cannot start the treatment because the steriods would eliminate the evidence that they are looking for to confirm Blau syndrome. I think that part of why they want the confirmation is because, to quote Dr. Benedict "At this point, treating Arvil is writing a journal article."

So, again we wait.

We will keep you updated.

Please keep praying for us.

Update 4-01-09

Yesterday we took Arvil to Salt Lake and met with Dr. Susan Benedict. Dr. Benedict will be the doctor that follows our little one from now on. This will be a relief to us as we were very frustrated with the resident neurologists at PCMC. She seems quite nice and like she will work with us. We did, however, have to wait quite a while to meet with her. Nothing much new, just going over Arvil's case and getting her impressions and ideas.

On Friday we will return to Salt Lake for a new MRI. We will be able to see the current state of the blood vessels in Arvil's brain and we will be able to determine whether he had a stroke recently or some other complication. If it appears that there is an ongoing blood supply problem, Dr. Benedict may recommend an operation called a pial synangiosis. The operation, of course, is intimidating to us, as it is brain surgery, it is very invasive, and we are not sure, at this point, how relevant it is to Arvil's case.

The operation involves bringing blood supply from outside the skull into the brain to provide additional nutrition and oxygen sources to the brain. Other options may be simply to give Arvil a regular dose of Aspirin to hel maintain blood flow. Hopefully Friday's MRI will shed some light on the subject and we will have a better idea how to proceed.

We also visited Pyper Monson, who is a little girl from our ward who was having to spend her first birthday (Tuesday) in the Shriner's Hospital for Children. Pyper was recovering from surgery on her recently amputated leg (she was born with serious deformities in one leg). Apparently the leg had gotten infected at the operation site. They are suspecting that infection may have been introduced while she was being fitted for a prosthesis. Pyper is a darling little girl, and I never cease to be impressed at how cheerful she is and how well she hops around on one dainty little leg. Arvil tends to be frustrated and bored because he cannot move well or operate his limbs like he wants. Seeing Pyper fills us with gratitude that our children are all whole and have all their limbs, eyesight, hearing, etc. However, it also underscores the fact that Arvil has serious problems that are impairing his ability to function and develop normally.

We appreciate all your help and support and ask that you will alll continue to pray with us and for us as we work through this time. Please also remember Pyper and the Monson family in your prayers. We love you all so much. Thank you for reading this blog and keeping up-to-date on our goings-on in this tough time.

Arvil's Birthday Party at the Laing's.

This is an old picture of Arvil back in January undegoing the EEG test. All the colored wires come out of the bandages on his head like a ponytail. The wires have electrodes which are covered in a conductive gel and taped to various specific places on his scalp. The bandages are simply there to keep it all in place.