Not Just the Facts

So much to tell you. So much has happened. So many thoughts and feelings swirling around in my head.

I'll start with the facts...

The Facts:

So as most of you know, either through Facebook or my mother ;), Camille was admitted to the hospital on Monday with pneumonia. This latest round of sickness all started last Wednesday evening when Camille started to run a very high fever. By Thursday morning, her fever was up to 104, so of course, I took her into her pediatrician. He did a flu test and a strep test, both of which were negative. Then he took a chest x-ray. The x-ray showed some pneumonia in the bottom of one of Camille's lungs, and so he gave her shot of antibiotics, and sent us home on yet another antibiotic and breathing treatments. Her fever was down by the next day, and we were doing breathing treatments round the clock, so we thought she was getting better. Later that weekend, she started having trouble breathing. She was gasping and gagging, and her breathing was just incredibly labored. We took her into an Urgent Care center, and to the ER, but her oxygen saturations were still in the bottom of the normal range, and so we thought she would be fine in a few days. By Monday, though, we took her into our pediatrician's office because in a matter of hours, her breathing had gotten significantly worse. I heard our pediatrician outside the exam room saying, "Oh Camille, Camille. I should have known you would be back to see me," in his usual fun, joking tone. Then he walked in the door, took one look at Camille, and said that he had to admit her to the hospital. Then he opened back up the door, and shouted at a nurse to bring him a nebulizer NOW. It was a little disconcerting. Okay, it was a lot disconcerting.

So, we're here. At yet another hospital. Hooked up to more monitors. Answering more medical history questions. Running more tests. Telling Camille's story to more medical people. The pneumonia is now in both lungs. Camille has been needing to be on oxygen because her oxygen saturations are too low without it. She is receiving breathing treatments every 3 hours, and "patting" treatments every 6 hours. What in the heck are "patting" treatments, you ask? Well, those are Camille's personal favorites. That is where a Respiratory Therapist beats (I mean, pats) my sweet little girl firmly on the back to break up the mucous in her chest. It's fun (read: torture) for both baby and Mommy.

In the midst of all this craziness, Camille has also had a new battery of GI tests run because we saw a new GI doctor last week. We had just felt like something was being missed GI-wise, and so we wanted to get a second opinion. Our pediatrician referred us to a GI doc in Round Rock, and we really liked him. He was very understanding and thorough, and we really felt like he was committed to trying to find out why Camille has been having so many GI problems. My favorite part about him? He asked to hold Camille. He wanted to hold her and carry her around and show her off to all of the nurses. He sure knew the way to this Mom's heart. No other doctor that we have seen has asked to hold Camille. So anyway, he ordered a ton of tests (upper GI, lower GI and ultrasounds), and we are getting them done while we are in the hospital.


And now for the good stuff...

The Commentary:

1. The medical personnel here at this hospital have been very nice and for the most part, very helpful. But they have seriously acted completely dismayed by Camille. They have acted like they have never seen a G-button before or heard of a child with a genetic syndrome. I think one radiologist used the word "fascinating". Okay, so that's not necessarily a bad word to use---when it's used to describe a rare kind of plant or animal! But not my baby!

2. Respiratory Therapists are a really nosy bunch. Seriously people. Just come in and do your breathing treatments and your "patting". You don't have to know every little thing about my child to do that. I have felt like I was being interrogated on a witness stand during almost every RT visit. Maybe they just feel the need make small talk during the breathing treatments. The quiet hum of the nebulizer works for me, but maybe it's just gotten too old for them. Or maybe all of those steroid fumes are starting to go to their heads. Can I claim that for why I've been so loopy lately?

3. Or maybe my loopiness is from total sleep deprivation. I now see why that's used as a torture technique. It is pure torture. And it's starting to take its toll. I recently rubbed toothpaste all over my hands, thinking it was hand lotion. I have accidentally gotten out and left my car running in two different parking lots on two different occasions in the past week. I forgot to send Henry to school the other day with a coat, and he had to wear one from "lost and found" when his class went out on the playground. Ouch. And just today I dumped a full bottle of formula all over the floor because I tried to pour it into a closed feeding bag, AND I walked out of a radiation room after one of Camille's tests still wearing my heavy shielding apron so that the tech had to chase me down to retrieve it. There's no telling how long I would have worn that thing without realizing it!

4. So a nurse aide walked into Camille's room today and said that she came to bathe Camille. She filled a tub with water and soap, and then said to me, "Okay, here, Mom. Do you want to bathe her?" I looked at her and seriously said, "No, not necessarily." The old me--the me that actually got sleep and wasn't so unbelievably beat down--would have worried and worried that saying that made me look like a horrible mom. But the new me--the totally tired, weary-of-it all, almost-completely-beat-down me--just thought to myself, "Heck no, lady, not if you're capable and willing. I am so freaking tired. You are more than welcome to bathe her while I sit down for the only five minutes that I'll get to all day!" And I did just that. And only felt slightly guilty about it.

5. I was actually mistaken for a doctor today. No, it's not because I was looking so professional and doctor-ish in my Baylor t-shirt, sweat pants, limp hair and dark-circled eyes. It was because of my vast medical knowledge. Yup, that's really it. A radiologist was asking me about some of Camille's history today, and as I was answering his questions, I realized he was looking at me funny. He then asked me, "Are you a doctor?" Uh, no. "Are you in the medical profession then?" Uh, no again. "Oh, it just sounds like you know all of this medical stuff really well." I guess that's what happens when you have spent the last nine months either in the hospital, or the doctor's office, or scouring medical sites on the Internet. I should have answered that I actually do have my M.D. in Genetics from the World Wide Web, but I wasn't quick enough to come up with that clever of a reply. Must be that whole sleep deprivation thing again.

6. I miss my little boy. Henry continues to be a real trooper through all of this. He is currently staying with his Nani and Papi in Fort Worth, which he thinks is way better than being at Mommy and Daddy's house anyway. But I can barely stand it. I miss his little voice chattering away a mile a minute. I miss the way he is so snuggly after his naps. I miss his constant singing and question-asking. And okay, I even miss all of his little shenanigans. The latest adorable thing he is doing? He will start counting, and forget a number, but instead of just skipping it, he will replace it with the word "number". For instance, he'll say, "One, two, three, four, five, number, number, eight, nine, ten." Love it!

7. The people who designed this hospital, and for that matter, Scott and White hospital, did not have a special needs baby. How do I know this, you ask? Well, simply because in both hospitals, you have to walk through the labor and delivery waiting area in order to get to the NICU and pediatric wings. What's the big deal about that, you ask? Well, if you have a special needs baby, or a chronically sick baby, it is so darn hard to have to walk through the area where everyone is anxiously awaiting their perfect little bundles of joy in order to see your baby who is struggling. I almost want to throw up every time I have to do that. Maybe I'm just bitter. Okay, probably I am. But I don't think there is anything more difficult than seeing all of these other people having healthy babies when yours is not.

8. And I guess that brings me to say that I am honestly struggling right now. This latest hospital stay has been more difficult than anything else so far, and I'm not really sure why. I think it might be because I keep having this feeling that this is just a preview of our future, a small glimpse of what our lives are going to be like from now on, and I just don't know if I can do it. This is the first time since Camille was just born that I have seriously thought over and over again, "I can't do this. I can't do this. I can't do this." I just don't know if I can do repeated hospital stays and constant medical issues. And I don't know how much longer we can keep up this crazy pace, and still keep our sanity. I am tired; I am stressed; I am weary; I am sad. This just was not what I imagined my life to be like, and it seems to just keep getting worse. And so, I have been praying. One simple prayer. "God, have mercy." That's it. I started praying it at about 4:00 a.m. our first night in the hospital when Camille was awake and screaming inconsolably. I repeated it over and over in my head. And I guess I will just keep praying that, and hoping that I can begin to feel God's mercy in new ways, even in the midst of all of this.

Valentine

Camille has something she would like to ask you...

" Will

You

Be



My Valentine?"

Oh wait! Never mind! She forgot! She already has a Valentine...

And he's as sweet as this cupcake he's eating.





Yep, super sweet Valentines for sure!

Whoo-hoo!

We, two very adorable children, one with a scratch on the nose, the other with a big silly bow, have two very exciting things to tell you.

Did we mention they are two very exciting things? Ready???

No, don't worry. One of them is not that our Mama is pregnant again.

Okay, here goes! The first is that Camille did not have to be admitted to the hospital. Her infection is clearing up!

The second is that Camille ate 5 ounces of formula BY MOUTH FROM A BOTTLE TODAY! Can you tell how proud she is?!

See, told ya! Very exciting! Can we get a Whoo-hoo?! (Or Sic 'Em Bears. That kinda works for this photo too!).

Sick...again...

We are a house full of sickies once again. Or is is sickos? Sickos sounds too much like psychos, so I'll stick with sickies. Psycho hits just a little too close to home as a descriptor for me right now.

Anyway... Jason, Henry and Camille are all sick, each with their own issues. Henry had pink eye followed by a cough/congestion which has lasted for over a week now. Jason may or may not have the flu. And Camille. Sweet little Ms. I-catch-everything Camille. We are not sure what she has.

Her latest round of the sickies started right after we got home from the Houston genetics visit. She had fever and some congestion, and our pediatrician thought she might have seasonal flu. She took Tamiflu for 5 days, and that seemed to clear that up. Then, she started screaming and flailing (more than usual) when we were feeding her. We were concerned that her g-button might be infected, and it turns out it was.

Our pediatrician originally thought that she had a staph infection in her button, and so he gave her an antibiotic for that while we waited on the culture to come back. However, she started running fever again last night, and it was pretty high, so I took her back into the doctor today. The culture had come back by now and it was not staph, but some sort of other bacterial infection. The pediatrician who saw Camille today (ours is out of town and probably very thankful that he gets to miss the latest round of Camille drama) said that it was a really uncommon form of bacteria that is not seen much (gee, sound familiar for Camille?). He also said that this type of bacteria usually does not respond to oral antibiotics. So, he gave Camille a shot of antibiotics today, will give her another one tomorrow (yes, we have to go back into the doctor on a Saturday), and then if it doesn't respond to those, he will have to admit her to have IV antibiotics. Fun, fun.

Not only does she have that going on, but he also thought that she might have RSV. He is going to check her breathing again tomorrow to see if it is better after we have been giving her breathing treatments today.

We also found out today that Camille's DHEA levels are still really elevated, and have even gone up slightly from before. No one knows exactly what that means still, even after these new rounds of tests, which is exceedingly frustrating to me. Apparently, a lot of Camille's sleep/irritability issues could be caused by her elevated DHEA levels, which means that we would really like to figure out a means of treating this to get her feeling better. We have been up with Camille all night almost every night for the past few weeks as she has had a harder and harder time sleeping.

So, I'll try to update you tomorrow on the latest. You all continue to be such an amazing support to us, and we truly do covet your prayers.