Tuesday, March 31, 2009

Health updates

Olaf's mouth and throat have responded well to the steroids, but the steroids have bad side effects too. He should be starting Imuran today which is good. In a few months, when the Imuran kicks in, they will be able to lower the Prednisone. It's a balancing act.

Simon had to have his blood drawn today. They are looking for Epstein Barr. He had a fever for five days and now his tonsils are coated in a white plaque. The strep culture was negative.  Oh happy day!

Thursday, March 26, 2009

Olaf is home

Olaf is home and Simon has a fever. When it rains, it pours. I am tired both physically and emotionally. I wish I could quit. The end.

Tuesday, March 24, 2009

Olaf update

Olaf could be home tomorrow if he can swallow the medicine that the doctor wants him to come home with. If not tomorrow, then definitely on Thursday. He is beginning to heal even though he still has a lot of pain. He is on Dilaudid for pain right now and it does wonders for him. However, I don't think they will let him come home on that medicine. Vicodin, yes. Dilaudid, no. I am not sure if he is ready to give up his Dilaudid, so he may stay till Thursday anyway.

I have so many people to thank. I don't think many of them read this blog, but I want to thank them anyway.

Ray - You were the first person I thought of when I needed someone to stay with Olaf on Friday night. I knew you would do it without any reservations. Thank you so much.

Cheri - Thanks for watching the children Friday night.

Stephanie - Thanks for bringing lunch for the children on Friday and taking Grace and Josiah to your house.

Patty - Thanks for watching the children on Saturday.

Chief - Thank you for my Chili Dogs from the Varsity. You rock!

Tammy - Thanks for dinner on Saturday for the kids.

John Morris - Thank you for dinner for the children on Sunday.

Delta Family - Thank you for the phone calls and well wishes and hospital visits. It was very nice to have so many people care about my husband.

Friday, March 20, 2009

Olaf is in the hospital

Just a quick note to let you all know that Olaf is in Crawford Long Hospital. If he responds to treatment we are looking at a 3 to 5 day hospital stay. He cannot swallow at all at this point and is in a lot of pain. Please do not call the hospital room. I will update here as we know more. He will be starting major doses of IV steroids at 4:00 pm. I will be leaving here around 7:00 pm to go home for the evening and will be back tomorrow morning. A good friend of Olaf's from work will be staying through the night with him. Thank God for good friends!! THANK YOU RAY!! I am trying to juggle people to check in on the children, so if you are willing to do that, please let me know before you drop by the house. You can call my cell phone and leave a message if I do not answer. Thanks so much.

Monday, March 16, 2009

Pemphigus Vulgaris and Las Vegas

There is intercellular staining on monkey esophagus at a titer of 1:640. There is no staining with IgG on salt split skin. The Elisa for the anti-desmoglein-3 is positive. The Elisa for for anti-desmoglein-1 is negative. These findings are consistent with the diagnosis of pemphigus vulgaris.

Olaf's diagnosis was confirmed today as Pemphigus Vulgaris. He is now on 80 mg of Prednisone to try to get his symptoms under control. Prednisone can be an awful medicine with bad side effects, but the goal is to get his scalp and mouth healed. Then he will hopefully go down in dosage and be put on Imuran or a drug similar to that. His scalp looks awful right now and he is losing his hair where the sores are. We are hoping that this treatment plan begins to give him some relief from the debilitating pain he is constantly in.

On a much brighter note, Olaf and I spent three glorious nights alone in Las Vegas, Nevada. We had a blast walking the strip, eating at the Stratosphere and looking at the fountains at the Bellagio. Las Vegas has changed so much in 20 years and we truly enjoyed our time away from the children. We need to do it more often. Here is a picture of us in the Top of the World Restaurant in the Stratosphere.

This trip solidified the fact that I don't want anymore children. It was way too much fun and I am too old and selfish to have anymore. I have decided we will do one family trip and one couple trip a year. The end.

Thursday, March 05, 2009

Some clarification

There were a few comments from the last post that made me want to clarify some things about Olaf's diagnosis.

Pemphigus is an autoimmune disorder of the skin, therefore the diagnosis is usually made by a dermatologist. The rheumatologist didn't even test for pemphigus because that is not his specialty and it is *that* rare. All Olaf's tests that the rheumatologist did came back negative, so he is 100% confident that the only thing Olaf is dealing with is pemphigus. The rheumatologist is NOT the doctor that will be Olaf's primary care physician during his treatment. It is out of his area of expertise. In this particular autoimmune disorder, the primary care physician is almost exclusively a dermatologist. We still do not have the results from the second scalp biopsy, therefore Olaf has not started treatment. We will hopefully know something by next Tuesday as we are leaving on Wednesday for our first ever trip away from the children. I will update as I know more.

Tuesday, March 03, 2009

We have a tentative diagnosis

Thanks to the dermatologist of all doctors. Olaf's scalp biopsy came back positive for pemphigus. It is a very rare autoimmune disorder. As a matter of fact, the dermatologist said he has only seen one other case at his practice approximately ten years ago. So today they took another scalp biopsy and drew blood to send out for further evaluation to determine the severity of the pemphigus. When that comes back, then he will start treatment which will include high doses of prednisone as well as other medicines. I am thankful for a diagnosis and hopeful that treatment will help him.