Rian our Little Man

Well it is funny (in a depressing sort of way) to be sitting here in the PICU (pediatric intensive care unit) in St. Josephs hospital (Rians first home) and updating you on how he is doing when just less than two weeks ago I was trying to convince myself that he was a normal boy. Ha. I know he still is and I know this can happen to ANYONE but this just goes back to when we were told before we left the hospital:

A common cold for one kid is Pneumonia for Rian. Pneumonia for one kid is scary but for Rian it could be a death sentence if not caught fast enough.

Now here we sit with our big boy, who was just diagnosed with Double Pneumonia, a severe ear infection and RSV. Now if that isn't enough to freak a parent out I'm not sure what is. Now it is clear to us that Rian getting sick is something a little bigger than say, the girls getting sick but never did we think we would get such odd treatment that led us to question doctors, their connection to actual patients and diagnosis...when do you know you are ACTUALLY getting told what is really going on.

Here goes the story from the beginning.

Monday night we noticed Rian had a fever and it went anywhere from 100-102. We gave him Tylenol and called the doc, they said call back if it persists. We called the heart doctor also his breathing was pretty quick and his heart seemed to be pumping out of his chest but it was a no go and the doc had us count his heart beats and he was only at 155 which is normal. So off to bed we went.

Tuesday he was okay but still wouldn't eat, and was just exhausted. No fever for almost all day (with the exception of middle of the night) and so we figured if it stayed that way we needed to try and get him to daycare. By the end of the night he had more energy was even smiling and talking to us but then wednesday rolled around.

Wednesday we took him to daycare and around 1 they called us to say that he had a spiked fever of 103 and that we needed to get him. Of course both RC and I jumped and I headed home about 3 and RC headed home then. HE took him to the doctor (Dr. Gettleman) as our doc had just left the practice and is opening her own office and so we went with who was available out our pediatric office. We have had issues with him before and that is that we have only seen him twice for the girls. He is cold, blunt and doesn't really listen to us, I say its because we aren't his normal patients but the more I think about it the more I think he is just that kind of a doctor. SO after a couple minutes (literally ) of looking at Rian and "listening" to him he sends us home and tells us its a common cold. NOW granted, that sounds simple enough but for us, each appt. requires an oxygen monitor when he is sick and he didn't do that, he also has to think that a common cold for Rian isn't the same for a regular kid and NONE of that was taken into consideration. He didn't take into consideration his struggle to breathe, nothing. We took him home and kept a close eye on him.

Thursday I stayed home and he was still not eating, had a bouncing fever and was just miserable, exhausted and SICK! We stuck it out as it hadnt even been 48 hours (which is what they have us wait) and by Friday, when RC stayed home I just decided I had enough and we needed to get him BACK to the doctor. This time we saw a doctor we like (but still wasn't our normal pediatrician) Dr. Prentice, she automatically hooked up to the oxygen monitor, gave him a breathing treatment, diagnosed him with an ear infection and said it SOUNDED like a bronchial infection but wanted to send us to ER as his oxygen stats were at 68% which is BAD!

Friday night, we rush to ER for Kids (Mendy's Place) at John C Lincoln Hospital and they get him hooked up to Oxygen, get him xrays, drew blood and did RSV swabs and H1N1 swabs and gave him two more breathing treatments. Within two hours we were told it was double pneumonia and that he STILL (obviously) had his ear infection. They said the RSV and H1N1 tests both came back negative so that it wasn't a concern. THey called an ambulance, got him hooked up to fluids from an IV and by 11 we were on our way to St. Josephs...AGAIN. Off to the Pediatric Intensive Care Unit we go.

In between all of this, Matt and Ashley were SOO great, they came and picked up the girls and are STILL taking care of them and they brought us food, GOODNESS that was great. The funny thing is that at first I was devastated thinking...we have NO family out here, but then I realized. Shoot, yeah we do. Our friends out here, our close little family of friends is what we have and they REALLY came through for us. I appreciate more than I can express.

Saturday Morning (2am) they swabbed Rian again for RSV and GUESS WHAT! This time it came back Positive. Yeah. You heard me, second time we had a misdiagnosis. THis is where my skepticism comes in. Haha. For now they don't have him on fluids since he is drinking fine on his own but he still can't have food and still is pretty lethargic.

My heart breaks when I think that I should have caught this, or maybe we didn't bundle him up good enough or whatever, but what it really comes down to is I know I may be overdramatic when it comes to him but this is why. Had one doctor maybe done the oxygen monitoring, looked a little harder, cared a little more, perhaps we wouldn't have just been an insurance claim and would have been a part of his little "patient family" as well. I can't wait for our doctor (DR. Hineman) to have her practice up and running and maybe then we can rest assured that our three babies get the care they deserve.

I know you all don't want to see the pics, but I can't help it. It helps me to feel like one day he will look back at this and laugh because he will still be in the "stress my parents out phase" only then it will be sports he's playing, girls he's dating and pranks he is pulling. Haha.

Note: Just because I laugh and sound all together doesn't mean I am. If you know me at all you know this blogs keeps me together, but inside I'm a wreck, so try not to say I am strong and just keep us in your thoughts, you guys keep us going and I appreciate everything each one of you does for us. Makes me realize we are truly loved.

FIRST breathing treatment:


SECOND round of IV's in his arms, they have a heck of a time finding a vein:


SECOND Ambulance ride of his short little life: