Sunday, May 22, 2011

Cali's Journey

I know I'm a very sarcastic person, so forgive me when this post is missing my usual witty-ness. And sorry, but this post is kind of a novel. This has been a long road, and since I have been telling her story over and over to the ten thousand-ish doctors we've seen in the last month, I thought I would blog it. So, in case you've ever wondered about my little Cali, well - here goes.

When she was born, until she was about ten months old, she was the world's most perfect baby. She never cried. She was always happy, her eyes always sparkled. She slept more at night than my other two kids. I was in heaven. We all were. I was thinking we needed to have at least five more kids, because Cali was so fabulous.

Then, on the 4th of July, she woke up with a 104 degree fever. She was so sick. No one was open that day so we ended up taking her to an insta-care we don't usually use and will never use again. Because the people there are amazingly stupid. That's as nice as I can put it. So we took my sick little baby in, and they diagnosed her with a respiratory virus and said she'd get over it. She had no other symptoms. No runny nose, no cough. Nothing but this fever. So I didn't really
believe them, and the next Monday I took her to her regular doctor. Who said it was teeth. Teething. Really? At 103-104? That night her fever got up to 105, and I was completely terrified. So we took her to the ER after much debating and calling to get Blair's mom out of bed at 2 am. By the time we go there, her fever broke and the doctor couldn't figure out why in the world we were wasting his time. So we came home, but the next day I took her in to her regular
doctor again and demanded that they do something.

So the tests started, where they ran every blood and urine test they could think of. They knew there was a serious infection because her white blood cell count was seriously high, but they couldn't find the infection anywhere. So, two weeks and 6 days later, the doctor said if her fever
didn't break by the next day they were going to admit her to the hospital. It broke.

For the next several months, I continued to take Cali back in, month after month, telling her doc that she had incredibly high fevers and no other symptoms. They checked her ears. They checked her blood. They told me it was teething or a virus. Sometimes they would give her antibiotics, mostly just to pacify me, I think. By January, I was getting desperate. Cali had had a
fever of at least 104 every single month since July.

And then the worst one of all hit in February or March and her fever sky-rocketed to 106 and we couldn't bring it down. By now I was used to fevers. 104.5? No big deal. I reacted to it the same way I used to react to 101. But when it got to 106 and we were giving her advil and Tyleno
l alternately, trying to bring it down, washing her in a cool tub all through the night and nothing helped, I freaked. Blair gave her a blessing, in which he specifically asked that we would be able to find out what was wrong. We took her to the Pediatric ER at the hospital, where we saw Dr. Barhorst, who I believe is an angel in every way. She immediately ordered all kinds of blood work and told me she thought it was a continuous fever syndrome or leukemia. She did the tests. We waited a week and it wasn't leukemia. Thank heavens. None of her other blood work showed anything either, and we were disappointed that we still didn't have any answers. Dr. Barhorst told me to talk to our regular doc about the fever syndrome, so I did the next time the fever hit. She said if Cali wasn't better by August (!!!!!) we would start doing tests.

Are you kidding me?!
She tried so hard to be happy anyway

And then Cali got worse, and our doc couldn't fit us in, so she sent us back to Dr. Barhorst. Who ran a test on Cali called a CRP count, which she didn't usually do but felt like she should. This tests the level of inflammation in the body. The normal count is 20.

Cali was at 84.

So now we know there is a serious problem and the Dr. Barhorst starts ordering serious tests. CT Scans, huge amounts of blood work, EKG. After the CT Scan Dr. Barhorst called me and said she thought it was cystic fibrosis and she was sending the scan to a specialist to look at it right away. I was devastated.

The specialist, however, didn't see anything wrong, and sent it back to Dr. Barhorst. But she didn't believe him, and sent the scan down to Primary Children's to a pediatric rhumetologist. Who told her that yes, there was something very wrong and that they had seen it several times. In the bone behind Cali's left ear, it was completely infected. You couldn't even see the bone in the scan because of the infection. And the bone behind her right ear was nearly as bad. Somehow, when the specialist had gotten the CT Scan, he hadn't gotten the whole thing, because all it was supposed to be capturing was her sinuses. But the specialist at PC saw the whole thing, and because Cali was so tiny, it had accidentally captured behind her ears, too.

SOOO the specialist fit us in that same day, and when he looked at Cali's ears, he said the infection was so bad that her left ear drum had thickened and they aren't sure she'll regain hearing in that ear. Her right ear is still okay but at this point, and probably for the last year, because of the infection she can't hear hardly at all. My heart broke. My poor baby had been living, not only in constant pain, but also in a nearly silent world.

Tomorrow we go in for surgery. I'm scared for two reasons. One, of course, is that it's surgery, and that is always scary but especially in one so tiny. Two, I'm so terrified that this won't help, that it won't make her better and that we are all wrong again, and that she'll have to keep living with the same pain and exhaustion she has had for the last year.

In the surgery they'll clean out the infection in the bone behind both ears. They are also putting tubes in, hoping it will help. And then she'll be on powerful antibiotics that will make her sick, for six weeks. And then we'll repeat the hearing tests and CT Scan again, and hopefully, my baby will be all better.

And Cali will finally get to be a happy, healthy baby again.

Please keep her in your prayers tonight. :)


marshfam said...

I'm so sorry to hear about all of this. I can understand the anguish of medical problems in a tiny child, it's awful. I cannot though appreciate the anguish of continuing on with no diagnosis or incorrect ones. How frustrating that must be! Take care, I will hope and pray for the best for you all tomorrow!

Karlie said...

Wendy, I'm sorry to hear that things haven't been going well for your family. I pray that everything will go well and Cali will be better soon. Continue to have faith that Heavenly Father knows what is best and will be there to help and comfort your family as you make it through this trial.

Justin and Carissa Briggs said...

Wendy, I feel terrible that I didn't understand how bad things have been. I am so sorry to hear this and for Cali and all of you. We have been praying for her and I hope she is feeling better and I hope this surgery works! I love you all.

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