Tuesday, March 29, 2011

Because sometimes I gotta blame someone...

Other than myself, of course. At least every once in a while. I admit, I have been distracted this past week. Very. For reasons I won't get into. But, because I think I deserve a little slack occasionally, my blame game goes something like this: Thank you, OT lady. Thank you for letting Austin mouthe every toy you handed him, despite my disapproval. It wasn't so much lead paint and choking hazards I was concerned about, although those are certainly valid reasons for concern. I know I'm protective and sometimes neurotic about Austin and germs and kids DO need their little immune systems to build up a tolerance. BUT, can you blame me for wanting to avoid any more complications and unnecessary illnesses when we're barely treading water here as it is? The last two times Austin's been he's gotten sick. He's NEVER sick. And when he is, we typically have to let it run its course and treat only with Tylenol and natural remedies. No antihistamines for this kiddo. Nope, he has a low tolerance for seizures, which make these a no-no. Tylenol, Lil' Noses, and Vicks Baby Rub are our only arsenal against the nasty colds. Which, can be quite an ordeal when your child still hasn't mastered the skill of blowing his nose. Every surface he touches becomes covered in drool because he doesn't want to swallow and snot because he smears it everywhere. And don't think I'm ranting because he happens to have his second cold in just a month. I wouldn't freak over that. Austin tends to have eczema flare ups during the slightest illness. A cold included. He's been scratching, scratching, and SCRATCHING. You should see the kid's back. Can anyone tell where this is going? Let's see, partially healed incision + scratching = INFECTION. Not fun. At all. This boy is never out of my sight, therefore you'd think nothing like that could escape my attention. Regardless whether I should have seen the beginnings of a problem. So, I've beat myself down enough over the last two months (or three years), I'm choosing to pass it off this time.

Thursday, March 17, 2011

It's here

I can't honestly say it's been worth every penny...just yet. We've had a few issues -which I'll go into more detail later on, and it's quality has left something to be desired. But, it's serving it's purpose nonetheless.

After our little insurance mishap, I put all the other, more expensive beds on hold. We're also in the application process for our state's disability medicaid that also assists with medical equipment and so forth, so I thought it best to wait until we could possibly get help with funding. The least expensive one of the three I chose was still going to cost about two grand, so 150 bucks didn't seem so bad as a temporary relief. I figured if it didn't hold up well, we wouldn't be out thousands.

I'd like to say it seems worth $150, but I'm not so sure. The construction is quite flimsy and the only thing that sets it apart (in my opinion) from a cheap camping tent are the dimensions which accommodate a twin size mattress -sort of.

We already had a large twin size mattress from the guest bedroom. The thickness of it definitely cuts down on overall height on the inside and head room for Austin. He can sit up in it without straining his neck, but just barely. It definitely won't be that way long though as he's always growing.

Now, for the major flaw. Even with a large twin size mattress, there are spaces on each side between it and the sides of the tent. When I set it up, I felt the gaps and crammed pillows to fill them in on one side. It seemed safe with no gaps (or so I thought). That night went well. I got sweet photos and was so excited to share the news. My first Austin free night of sleep! Okay, he was still in our bedroom, but still. Out of the bed at least. The next night, however, didn't go so smoothly. I miraculously woke up about 2:30 am. I could tell that he was awake. He wasn't super loud, but I knew he was awake. I sat up and leaned forward to see him. When I couldn't, I walked over to the side and peered through the screen. Still didn't see him. I unzipped it to find him completely wedged between the mattress and sides. His little body was sideways facing the mattress but his head was turned looking up. I can't even tell you the terror that went through me when I saw him like that. He had no leverage to get himself out since his arm was in a bind underneath him. Needless to say, I fished him out and spent the rest of the night in there with him. Apparently, even though there were no obvious or concerning gaps, the fabric stretched enough for him to slip down. I think I found a temporary solution by double cramming every pillow we own into the spaces. I don't even think his paci can slide down there, much less an extremity or his whole body.

My initial plan was to give it week's trial in our bedroom since I wasn't comfortable with him sleeping alone in it yet and then move it to his bedroom (providing I could adjust the video monitor where I could see him). After the other night, I don't think that's happening anytime soon though...

So...IF anyone is considering this bed enclosure...STUFF STUFF CRAM CRAM...and then CRAM some more into those sides.

He sure is adorable in it though, I have to say. :)

This set up is a temporary arrangement. It really should be strapped to a sturdy bed frame or at the very least pushed into a corner for added stability...especially if you are using an air mattress or another light weight mattress.

Sunday, March 6, 2011

Another joyful day at Texas Children's

We just can't seem to stay away from this place. Since our nearly one week visit for Austin's surgery back in January, we've been back four times. One follow up two weeks after surgery, one in February, and most recently, our Tuesday follow up and yesterday's ER visit.

Yep, our little mystery boy's newest...

The strangest facial swelling that apparently had all six doctors involved (and one neurosurgeon) baffled.

I could just sum it up by stating it started as a bulge in the forehead and ended up as a swollen eye over the course of three days. But, to keep from sounding like the most neglectful mother on Earth, I feel the need to explain our reasons for hesitating so long to get him seen. So, you may skip over the next two paragraphs if you don't want the mommy guilt detailed play by play.

After our most recent post op follow up on Tuesday with the neurosurgeon (that's another blog post), Austin's head started subtly and gradually morphing into the oddest series of swelling. It started Wednesday. Certainly not significant enough for me to panic. So subtle, in fact, that Chad and I repeatedly wondered if we were crazy. Or if it may have been the way his hair was laying. We both noticed within an hour on separate occasions. I noticed while giving him a bath. It's dim lighting in our bathroom so I assumed it was the shadows on his head. Then about an hour later, I saw Chad holding him, looking at him strangely trying to get him to hold his head still. I asked him what was wrong and he asked me if his head looked strange. I immediately asked, "kind of lopsided?" We looked in one light, then another, and then a different position and then another. Something was different, but we couldn't put our finger on it at first. I took several photos, but the changes were so vague. He seemed like his normal self, so we just assumed we were imagining it.

Thursday morning, it seemed similar to the night before only the definition of the bulging was less obvious on his forehead. The contour on the side of the forehead was the same though. Once again, I took some photos periodically throughout the day wondering if I was crazy. One thing I need to point out is that it did not look swollen. More like oddly shaped. It was not soft as if it were swollen with fluid. It was on the right side (opposite side where they operated). His left side had previously appeared misshaped for a while after surgery so a lot of our suspicions were that the right side may have seemed larger because the left side was flatter. And with the scar being just to left of the center it already has a slightly asymmetrical appearance. That's how much we analyzed it...every little detail. Anyway, it wasn't until Friday that I knew it actually had been shaped differently. The defined contour on the side was gone. To me, it looked a bit puffy, but there I went wondering again if that was actually normal now that the bulging had subsided. More photos to compare throughout the day. I knew Wednesday and Thursday were different, but was it back to normal now? When Chad got home from work, he agreed it seemed a little swollen, but we still weren't completely sure what to make of it. We decided to watch it overnight and if it was any worse the next morning, we would definitely take him in.

The first thing I asked when we both looked at him Saturday morning was, Are we going to Beaumont or Houston? Not much more debate needed. I called TCH and had a neurosurgeon paged. He said he'd be happy to look him over, but that the symptoms I was describing didn't sound like an emergency or anything related to the surgery. He did insist, though, that whether we opted for a local hospital or TCH, he thought it was necessary to have him evaluated over the weekend.

Seven hours we were in the ER. We saw seven different doctors. He fasted for hours waiting on CT scan. Over the course of the day, the swelling mysteriously faded, leaving only slight puffiness and a pink eyelid. The CT was cancelled and antibiotics were given. A script for more antibiotics was written, although they told us not to fill it unless the swelling returned. Two different diagnoses were mentioned, but even they admitted they were merely guessing. The swelling was the only common symptom. So, seven hours, seven doctors, one dosage of antibiotics and zero explanations. Oh, by the way, did I ever mention we are insurance-less until April (yet another blog post)? Coverage just happened to expire on Tuesday. Go figure, right?

Wednesday night. If you look very closely, you may can see the difference in the right & left side. *

Thursday morning. Still a slight protrusion.

Friday morning. The more clear definition of bulging is gone, but the right side is a bit swollen.

Saturday morning. I don't think a description is necessary.

* Even after expanding this photo, it's still difficult to see unless you know what you're looking for. The camera doesn't show it well (and it wasn't very obvious to begin with). It's right along the hairline and along the side.