Tuesday, January 19, 2010

My Precious Boy

Whew...what a day...more like last few months! But we're making progress...my son, Kyler (2 1/2 years old) was diagnosed with Obstructive Sleep Apnea in November 2009. We were referred out to Rady's Children's Pediatric Specialist to see an Otolaryngologist so Kyler could have surgery to have his enlarged tonsils & adenoids removed. Not too huge of a deal but my goodness has this been a long few months! He ended up having a night terror & got petechiae all over his face & neck, so I called his Pediatrician & he decided to draw blood since he would be having surgery just to be sure that everything was okay. He blood came back with a low platelet count & he told me he had Von Willebrand Disease & needed further testing, so then we were sent to Rady Children's Hospital in San Diego, he ended up having more blood drawn, an x-ray & a CT scan. His x-ray came back fine, his rib cages is kinda funny looking so she wanted to be sure nothing was going on. His blood work came back good, his Albumin, total protein & Phosphorus levels came back high, but she wasn't too worried about that. She was however very concerned about the enlarged lymph nodes on the right side of his neck that he had, had for over a year, it is a sign of Lymphoma & she wanted to be sure he didn't have cancer. They scanned his neck, thorax, abdomen & pelvis...we finally got the call today about his bleeding test & his CT scan. The CT scan came back clear, NO LYMPHOMA...I cannot even explain to you how I felt when she told me my son didn't have cancer, I could breath again. His blood tests did show that he doesn't have Von Willebrand Diesease??!? But he did test positive for Lupus Anticoagulant (LA). I do not know all the details about what exactly this means but I have done some research & when I talked to her she said she thinks that Kyler does have Lupus (it runs in my family, my mother has it, but her's has been in remission for about 20 years). He will need to be tested again in April to see if he is still testing positive for LA & she requested that he see a Rheumatologist as soon as possible. He has an appointment with his Pediatrician this Friday, we have to get a referral to the Rheumatologist & an Optometrist because of how clumsy he has been lately, she said a lot of parents just assume a child is clumsy but it concerned Paul & I because of how easily he bruises, so she said it would be best just to get his eyes checked just to be sure none of this has affected his vision. I'm not sure what will happen now, she said to keep an eye out for any symptoms of a blood clot because he can get them in his legs & lungs, so I've been doing my research so I know what symptoms to look for. It's very odd for a child under 5 to be diagnosed with Lupus but she said given his medical history & our families the likelihood that he has Lupus is high. I'm holding it all together, trying not to freak out. I'm so glad that it isn't cancer & I knew that if the CT scan came back clear the next step was for him to be checked for any auto immune diseases, which is what Lupus is. So I was preparing myself for this, not that it's any easier to deal with or any less emotionally draining. These last few months have been hard for our family, but we are extremely blessed to have such supportive family & friends that have faithfully been praying for Kyler. I know I'd be a mess if Paul wasn't here, he has been incredible these last few months, so I'm definitely counting my blessings, because I know it could be worse. We are still staying positive & we know without a doubt that God has a wonderful purpose for Kyler to fulfill in his life. I waited far too long trying to get pregnant on fertility meds due to my PCOS to be negative now! He was cleared for surgery & we're hoping that he can get his tonsils & adenoids removed here in the next few weeks so he can finally sleep all night & won't stop breathing throughout night any longer. He generally wakes up every 2-3 hours, so it will be very nice for myself & my husband to have a good nights rest as well. Your thoughts & prayers are greatly appreciated & I will do my best to keep everyone updated on my precious handsome little man!

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