Friday, August 15, 2014

Mystery Diagnosis * Day 5 *

6 AM Update:  Nathan was pretty much fever free most of the night, thought MAYBE we were turning a corner .... this morning he was spiking a fever again. CT Scan was done at about 11PM last night, everything looked good on it from what I understand. We'll see what the DRs say this morning.

Doctor came in in the morning and said "We're taking him off NPO ... he can eat, but take it slow" ...

8 AM:  Feverish again this morning with the green dragon from Uncle, Aunt and family. And ice pack on his feet cuz they were hot

10 AM:  Daddy says "Nathan's on the upswing - he ate more than two bites!" ... I said "Yep, 10 ... two of jello and eight of soup & noodles"


11 AM ........  Nathan is REALLY tired today.  He eats, and then falls asleep ...


He was so excited to see his lunch tray! Lol. ... He didn't eat much but who cares! He ate and is so far holding it down!

Didjaknow that Nathan can totally disappear before your eyes? He does this disappearing act whenever doctors and nurses come in.

1 PM Update (Friday) ... Today is day 5 of being in the hospital. So ... late last night (11 PM) they finally did the CT Scan. Everything was good on there (other than the few things they expected to see) but nothing that needs surgery or that explains what is going on. He was pretty much fever free through the night but then spiked again this morning. Then this morning Surgery was in again - just to check on him. They checked how much water was in his balloon for his G-Tube (because when he was given meds this morning stomach contents came pouring out from around the button.) So they put a little more water in and wanted to get some different dressing for him that will help lift up the button to close have the balloon close off the hole a little more so he has less leakage. GI came in to check on him too, I guess they are going to re look at the CT scan for any ulcers or anything that maybe going on. In other words, they are going to re-look at it with a radiologist to make sure that they didn't miss anything. The doctors came back today and - funny note - the intern watching over him said "we'll be around earlier today, not a lot of kids on our service" ha ha ha ... so I said "you ditched them all for Nathan huh?' he laughed. He's still bringing up my "Butt Rockets" nickname for suppositories. LOL.. he was really impressed with that. He'll probably be using that for his whole career now. I should have copyrighted it. He goes "We should go in business together and start a new brand" lololol... awesome! Let's do it! Okay so anyway ... Pow-Wow with the Doctors. 1: They are really leaning towards Kawasaki disease. They have also brought up Pediatric Rhemitoid Arthritis and Scarlet Fever. 2: It doesn't sound like we are leaving ANY TIME soon, they were talking about ordering his HGH and not getting it until Monday ... 3: More blood work to continue to at least rule things out (because there is no test for Kawasaki's ... it's a process of elimination.) 4: He can eat again (which if you have been keeping up on the instagram pictures that get posted, you have seen.) He is supposed to take it slow... and so far he's only been able to do a few bites at a time. 5: They are contacting infectious diseases and pediatric cardiology ... .... In another note, I don't really like his nurse today. She came into the room and was suddenly re- arranging everything ... she got a bit snotty at Dennis for laying down to try to get rid of a headache on his pull out chair thing, which has been in the SAME PLACE since we got here, and made him move it like he put it there. She was messing with his IV on her own ... put his fluids down to 20 so he would get thirsty and ask for drink, and then she bumped it back up to 50 ... it's been at 60 otherwise. Not to mention she's really hard to understand. ;/ But the nursing assistant is absolutely freaking amazing! His name is Aaron and he came in here with a fantastic attitude, was playing with Nathan (hiding in a diaper - clean one - calling himself Mickey Mouse because that's what's on the diaper.) He sang and danced for Nathan and Nate was actually SMILING and almost laughing at this guy! He was awesome! AWESOME! Dennis is heading back home today - I'll be all alone again. I got up really early this morning and went to the showers in the hospital and took one. Feel less gross. But Nate won't let me leave the room with out crying, unless I explain clearly to him how I'll be right back and it will only take mom a few minutes... ;;; sigh ;;; and we're still in isolation and not getting out of it any time soon.

Oh I forgot to mention that on the little profile thing for the nurses .... Nathan is 123 years old! Dayum boy! Timelord in the making. Hasn't even gone through his first regeneration.

Taking a nap on his green dragon while the other lovies watch with jealousy. 

 Not a happy guy. ...

Dinnertime ..  Dinner! Still only doing a few bites. Got nauseated. Slumped over .... Then fell asleep.

He wanted his food near him. But he just slept.

After sleeping most of the day, he woke up with smiles and wanted cheese and chocolate milk! He didn't finish the milk and only drank a tiny amount of milk.

Do you see the halo of night sweats around his head? Is this his RSS rearing it's head. .. or a new symptom?
Night time. ... isolation. Back to being bound behind a closed door. Dude. The boy farts.... It's very much stinky in here! And the nurses complain when put Nathan's diaper bombs by the door so they smell it as soon as they walk in. Assault and warfare. Muahahahaha. They can at least leave the room. Rule of thumb with bombs, keep them as far away as possible. Isolated Mom win.

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