my... sick little boy?

Disclaimer: This post started out as an update for family and friends and became a little deeper than I anticipated. So read with caution. :)

My little baby spent the night in the hospital the night before last, because of seizures he had due to a fever spike. Very scary. He had his first (I hope ONLY) ride in an ambulance. He didn't love it. He endured all sorts of tests, including a spinal tap and chest x-rays to check for meningitis and pneumonia. Both came back negative. phew! He also had his little nose suctioned out to check for influenza and RSV and a few others I've never heard of. Those tests came back negative.

The doctors have no idea what caused the fevers except that his white blood cell count is quite high and he has fluid on his lungs. So apparently he is a medical mystery. :)
Now, I have to give a disclaimer because comparatively to some, including my own brother who has CHARGE Syndrome, my Boo, thankfully, is generally healthy as can be. However, no matter what pain and discomfort your child is experiencing, your whole body and soul hurt for them and wish you could take it away and bear it yourself.

Waiting in the ER while doctors told me nothing was wrong with my son who turned blue at home while throw-up drizzled down his cheeks and continued to, to the point only stomach fluid was coming out, watching him try to sleep on my lap and feeling his little body continue to shake and tremble, I wasn't about to accept that as an answer.
Those who know me understand I don't have a problem sticking up for myself and others... except when it comes to medical professionals. Well, long story short, I got over my intimidation pretty quickly that night. Our ER doctor was pretty rude, treating me like I was a crazy mom who was making things up about my child. I gave him a piece of my mind and demanded more answers. After about five hours in the ER he came back telling us (in so many words that didn't include an actual apology) that he had diagnosed him too quickly and would strongly suggest, due to the fluid on his lungs, a spinal tap to check for meningitis which can be life threatening or neurologically altering for life. He said the chances were low for such a disease, but I have seen, first-hand, the effects of it and wasn't going to take any chances. I was nervous to put him under, but although the test came back negative, it was worth it. It was really hard to see him try and come out of his anesthesia because he was so confused, but other than that, he has had no negative side-effects from the procedure and we can sleep at night knowing he's OK.

They finally admitted him into the hospital at about 1:30 a.m. and I had to try and help Grey sleep amidst all the cords and needles attached to him. Needless to say, neither of us slept that night.

Watching him tangled up in all those cords, I began thinking of my own parents who had to endure years and years of watching their baby from a distance, helpless, as doctors preformed test after painful test to find answers. I can't count the times they watched him being driven away in ambulances, not knowing whether or not he would make it to the hospital, let alone home again.

Four years he lived in the hospital after he was born and years and years after that, making frequent visits back where staff greeted my family by name. Because of this I am completely comfortable in hospitals. To be honest, I like them. In a way they feel like home to me and am comforted to be there. So when Boo got admitted, I thought it would be easy, but it wasn't. Every little procedure and process hurt me. I hated having to hold him down while a stranger poked at him. He just understood it as someone hurting him and couldn't understand why I wasn't helping him. That broke my heart.

I can't tell you how many times I had to suction my little brother's trachea out, growing up, and it NEVER bothered me. When I had to hold Boo down while they shoved a tube up his nose to suction it out, I couldn't even watch.

I slept with him in his gigantic crib. Aside from everything else, we had a pretty good time together. He was such a good boy and didn't complain too much. I think he was a little emotional because he kept giving me hugs and kisses for no reason. He was just happy I was there with him. I love him so much it is physically painful. To my surprise I love him more now than I did before and I didn't think that was possible. I'm just very, very thankful for every moment I have with him.

He is so happy to be home and is up walking around. He's still not feeling great, but he's much better. He's really clingy to me still and won't let me out of his sight. But I kind of feel the same way. :)

I have to say, I have amazing friends. The day it happened, I had my two friends, Amelia and Candida with me and they have been so supportive. Amelia came to the ER, the second time we were there that day, and brought us dinner because she knew we hadn't eaten. She also brought me another change of clothes since I ran out the door without changing after being thrown up on. She then came again after putting her babies to bed, to let The Hubs leave to study for his test the next morning. She stayed until midnight with me. And early the next morning came bearing a change of clothes, shampoo, a blow-dryer, face wash, basically anything she could think of to make me more comfortable. She stayed until noon and then came back at six to bring Grey and me home because The Hubs was at a meeting. She is one-in-a-million and I am so blessed to know her.

Candida offered to stay with me at the hospital through the day and also had a hot dinner waiting for us when we got home. She came over today and hung out with me all day which was really nice.

My parents came all the way from Farmington to visit Boo. They brought him a huge toy truck. And they brought me some really yummy See's chocolates. He was so excited to see them.
I am so blessed to have such incredible friends and family.

After this little experience, I have gained a great respect for those of you with children who require regular hospital visits. It is so hard to watch your children suffer. I will always be grateful for my healthy child.

Thank you for all your love and concern! We're doing great now!

Here are a few pictures that were taken the morning after he was admitted. Sorry about the quality. They're taken with Brock's cell phone because I didn't get my camera until later that night.





He hated his name tag. It caused him more trouble than anything, I swear! I finally had to take it off him because he obsessed about it.




His cage.





Grey perfected the art of the star tower. Our time was well spent. :)






He got to play in the toy room and couldn't be happier. I think he's feeling a bit better. :)




Again with the name tag obsession


This picture melts my heart.