In the meantime, Kal got another ear infection, but just in one side, and just that one side had ruptured. His rash had also changed in appearance as well.
Kal's immunologist also wanted him to be seen by a Rheumatologist. In order for us do that, they wanted Kal to have what they call a "skeletal scan" before the appointment. Upon arriving at the hospital that day, I thought a "skeletal scan" would consist of one x-ray of his whole body/skeleton. Well, it turns out that it actually consists of about 17-21 x-rays of different areas and angles, which made sense once they explained that they needed closer up views of his bones and joints to see if there was any issue.
My husband posted: "Our poor baby Kal is in the first of his 3 hospital appointments today. First, 21 xrays is being done right now to his poor little body, then an appointment with Rheumatologist, and last, Dermatologist is going to dig deeper in his skin to get more samples for more tests. 16 blood tests and labs last week were not enough to finally find out what's making our baby sick since he was born. Doctors and specialists are baffled and still have no idea what's going on. Just weird that most of the time the best way to feel better in situations like this is to just be alone then breakdown and cry."
Luckily, the x-rays came back showing hardly any issue, other than a little osteomelitis. They weren't concerned about that part. The Rheumatologist talked with us, and then discussed her thoughts with the Immunologist in the room with us. They ordered more lab blood work to be done, and wanted to discuss Kal with another Rheumatologist later, so they told us to return to their office once we were done with the Dermatologist.
At the Dermatologist, they wanted to take skin biopsies of two areas. Yikes! A skin biopsy is basically taking a core of skin out so they can get a bigger, deeper sample than just doing a skin scrape with the scalpel. The area was so wide and deep that they had to numb the area first (I really don't think that gave him enough time to have the numbing shot settle in, to be honest.) Then, after they took the biopsies, they had to put 2 stitches in each of the 2 areas. I couldn't bear to watch, but holding my child while they're screaming like that made me feel queasy and dizzy. Even after they finished, looking at his poor little stitches put my stomach in knots. We had to go to his Pediatrician a week later to get them taken out, and like you probably would guess, I couldn't watch during that either.
About 2 weeks later, we got a phone call from the Immunologist, saying all the blood work came back all negative, except one test had suggested he may have Chronic Granulomatous Disease. I had never even heard of that in my life, but apparently just the possibility of having it was a big enough deal to put him on medicine right away- an antibiotic and antifungal. She said Kal would have to have that lab work redone to help them confirm a diagnosis. Also, the Dermatologist called saying the results were inconclusive, other than they found one granuloma (caused by when many white blood cells knot together). This was pointing toward the hypothesis of Kal having CGD, because granulomas in the body is the main part of Chronic Granulomatous Disease.
The Immunologist gave me a website, www.primaryimmune.org, to learn more about CGD, just in case Kal really did have it. I read the information on that website, but it seemed they were not being as straightforward or blunt as I'd like. So, me being dumb, I Googled it. That's when the world as we knew it came crashing down. I was half happy that we had possibly found an answer to Kal's issues, finally. But, in my heart I also wished to Heavenly Father, "If we are going to have an answer, please, just let this awful disease not be the real answer." I had the hope that the results would come back saying, "Oh, just kidding, your son doesn't really have that. Sorry to worry you."
All we could do was take Kal in for his blood tests, wait, and hope.
I know my Savior lives and walks along beside me throughout my life. Throughout my life, and especially lately, He has carried me when I have felt unable to stand, embraced me when I felt alone, given me patience, and filled my heart with love. Above all, Jesus Christ felt my heartaches, my pains, and my worries. He atoned for my sins so I can have have the chance to repent of my pitfalls, and have hope for the future. He loves me, with His perfect love, and wants me to have eternal families and eternal happiness.
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