Friday, September 26, 2008

Crazy Things

I have spent the week in and out of the ER and doctors office with my 14 year old. Cody has severe hemophilia A. Sunday he woke up with a very stiff neck that continued to get worse as the day went on. We did factor at home and contacted the hemotologist. We went into the ER to check for a neck bleed and to make sure all was ok with the airway. Things did not get better over the next few days so they ended up admitting him to the hospital. Cody's neck was causing him quite a bit of pain and his head was always off to his left side. Many tests and imaging were done. What we found shocked us all! He has a clot in his jugular vein. Yes, my son with severe hemophilia had all of this pain from a blood clot! And guess what the treatment is? Several weeks of blood thinners....but he has hemophilia and if there is one thing we have all been told over and over again is you do not give blood thinners. We are trying to give daily infusions of factor with his daily injection of blood thinner. I am wondering if any of you moms out there have experienced anything like this? I've been searching the internet for days without much luck so I thought I would reach out to all of you!

Looking forward to hearing from you all!


sarasarasara said...

Lori, I have absolutely no experience with this sort of thing but wanted to say that I hope everything comes out alright. I am sure it must be frightening to hear your son has to be on blood thinners, when the hemotologists are forever letting you know what the boys can't have. Please let us know how he does.

Rhonda said...

Hi Lori,
I hope all is going well with your Son, do they know what caused the blood clot? Every day is a learning day for us
Keep us up to date on how he is during

SeansMom said...

I'm sure you were shocked! I know I would be. I hope your son is doing better. How is his treatment going? I'm curious to know what caused the clot. Keep us posted as to what's going on.

Lori said...

Thank you all for your support! My sons clot is due to a sydrome called Lemierre's Syndrome. Usually people have some kind of a throat infection first. The doctors are thinking that because we sought early medical intervention because of hemophilia we caught it early. We are currently infusing him with his factor twice a day. He is also getting an injection of Fragmin once a day. (this is a blood thinner) We are struggling with some slight bleeding where his PICC line is. We just keep taking one day at a time.

SeansMom said...

Lori what are the chances! It says 160 people in the last 100 years have had this disease. ...and then along with hemophilia!! At least from what I've read it treatable with antibiotics and blood thinners. You and your son are in my prayers and thoughts. I can only imagine how hard this must be on a 14 year old who is fully aware of everything going on. Keep us posted as he recovers.

Lori said...

Just a little update about Cody, my 14 year old. He has been so sick from the three antibiotics he is taking. We are now having to go in once a day for IV fluids and IV Zofran. This does seem to help him. We only have 5 more days of the antibiotics.

I was just thinking today how I felt 24 years ago when my oldest was diagnoised with hemophilia. I felt so lost and scared! Now I find myself with some of those same feelings. However not about hemophilia. To me that seems so normal to deal with but now adding something else that hemophilia complicates...its scary! It is such a balancing act. I am very grateful to all of you for your support!

Tomorrow I am going to go away with my girlfriends for a little girls trip. We are going to stay at a hotel and go shopping. At first I was not going to go. Then I realized it will be good for me to get away! Cody is now giving himself his Fragmin shots in his tummy and with his PICC twice a day factor is a breeze! Dad will be close by and allthough he may not do things the way I do...he still does a great job!

Hope you all take a little time for yourselves!