Wednesday, August 13, 2014

Mystery Diagnosis * Day 3 *

12:30 AM:  So .... its hard seeing little glimpses of Nathan, and then bam him falling back to square one. They really think this is something viral and it's just a matter of continue to support him though it and keeping his temperatures at bay and under control and such. (pending the cultures that are still out) ... They say his g-tube site looks good, he doesn't look septic, they don't think it's bacterial....So they are going to get more nausea meds on board, they got some tylonel on board, they are going to do some pedialyte through his feeding tube to see how that is tolerated. I have a feeling this is going to be a long night again.

Oh a happy note, a student came in at one point to do Nathan's vitals ... and she said "Oh my gosh you guys look a like" ... ha ha ... what?

2 AM:  It's almost 2am ... so about midnight Nathan woke up with his fever starting to climb again and vomiting. 4 hours out from his last dose of ibuprofen and his temp was 102.2. So feeds were stopped (Zofran to be given and pedialyde through the g-tube to be tried) ... tylonel was immediately given. 12:30am - temp check again, half hour out from the tylonel and still climbing, now it's at 103.5. At 1:05am temp check again and it's 104.2. Ibuprofen now given too. 1:53am - another temp check and it's back down to 103.5 now. She'll be back in a half hour to an hour to check again to make sue it's still going back down. He's got a cold wash cloth (since midnight) and ice packs around his body again since 1am. He keeps yelling at me about his wash cloth being "too warm" (I have an ice water bath I dip it into and everytime I do and put it on his forehead he sighs with delight) .. so I'm not getting much sleep. (*2:20am addition) Just as I finish that update, the overnight team came in and was checking on him and his belly is super tender around his appendix again so they are going to order an ultrasound to look. Because of the fever and the vomiting and the tenderness and all that, it fits, so it's either they are going to discover that is the source, or rule it out.

3 AM ...   Bedside Ultrasound (to check the appendix) and other stuff....

5 AM:  (This is a long info filled update) He came in to do the ultrasound at 3am.... he started it and asked if Nathan would lay on his back for him, upon uncovering him we found a mess under his Mic-Key button again - ended up having to do a whole bed change. Once we did that and changed his diaper (it wasn't his diaper that exploded either) ... he continued with the ultrasound. He was doing various things... I saw he got his right kidney and some other stuff. He had a lot of bowel I think. Then he was doing measuring and searching. There was one screen where he wrote 'AREA OF ORIGIN" and an arrow pointing at something ... then when he was done, he said "When was the last time he pooped?" So I don't know if I should be worried or not. ......... 4:40am Update ..... there is no appendicitis (YAY but I was almost hoping, but equally hoping not, because it was at least an answer) ... but they did see some fluid in his belly, could be something, could be nothing.... and a lot of bowel..., they want an x-ray of his belly (they are checking for bowel obstruction) - he hasn't pooped since Saturday. She said "the next couple of days" so it sounds like we may be here all week ... anyway .... she says the next couple days they are going to work on getting him to get the stool out (if there is no bowel obstruction) ... they are doing more labs, same labs they did when we were at the ER at home, some other labs, some deeper labs, going to check his liver functions and other stuff (that's just one thing she mentioned) some more bacterial stuff they are going to check for ... um.... they are going to do a viral swab once he wakes up to see if he has anything like Influenza .... um... I asked her if it was viral then why isn't anyone else sick, especially me (although I do wash my hand well) ... because I have a sucky immune system (so does Noah) ... and she said that was a fair question and had no answer. Most of the new testing should be happening in the next hour or so....

8:30 AM Update:  Temp at 6:45 was 102.7 ... gave him ibupofen because the tylenol wasn't touching it. at 8:15 it was up to 103.5 .... wash cloth and ice packs again because now it seems like the ibuprofen isn't working that well against it. Bugger.... we are on our way to x-ray now. They just showed up to get him.

(after x-ray)  Needed a bed change again.
 His breakfast was waiting so I asked if he wanted anything.  The only thing he was even remotely interested in was the bacon, he took only a few bites and was done.

11:50 Update ...... there doesn't appear to be any bowel obstruction. (Enema will be given soon to clear him out) ... if fevers are persisting after, getting a CT scan this afternoon. More labs (just a few additional tests they are adding to his blood work from this morning) ... just trying to figure out the source of his infection (the blood work is showing some sort of infection in his body) ... he is very grouchy and crabby, he's miserable, he could use some cheering up

Isolation is a little less isolating. ...

2:30 PM:  so it's almost 2:30pm and we just did Nathan's enema ... the bedside potty is in here like I asked. About an hour ago .... at about 1pm.... Nathan started screaming in pain, started vomiting and had some diarrhea (but not 5 days worth) ... he is so miserable 



4pm ... Nate's been sleeping for awhile now. He did have a poop storm.



5:30 PM:  (No filters) his skin is getting red. I am not the only one who had noticed. .

6 PM:  Ultrasound #2 of the day. Liver, gallbladder, gtube site.... And the doc didn't mention it but she looked at his heart too. ... waiting on the results.

Doctors decided that Nathan was NPO.  (Nothing by Mouth - nothing to eat or drink.)  There was the chance of them ordering a CT .... Nathan is not hungry ALL DAY LONG but the second he's ordered NPO ..... he decides he's hungry.  Every 2 minutes "I'm HAWNGRY" .... :::sigh:::  He's telling me he wants chips, and soup, and noodles, and soup with noodles....

Well, his lunch tray was sitting on the counter in the room by the sink, and outside the door, his dinner tray was sitting on the gown station ...

So at one point he's whining up a storm, and suddenly he is saying something to the effect of ... ... well when I finally figured it out, he had wanted me to open the door.  So I did.  Then he tells me . "GET IT" ... so finally figured out that he wanted his dinner tray.   So I moved the lunch tray out and I'm explaining to him that he can't eat (again) etc and so on .... well....  a nurse over hears me and she comes and starts to carry away this trays.   THIS is what happened when he saw his food being carried down the hall ....

So ...... every other hospital room that we have stayed in has a *couch* that turns into a bed that two people can sleep on.  We figured this room was no different.  I hadn't pulled it out because I just sleep on it like a couch.  So ... Daddy comes tonight, and we're trying to pull the couch out to the bed, and wouldn't you know... he pulled it COMPLETELY OFF THE BASE.  *smh*  He broke the damn thing.  He is putting it back and ... the nurses walk in.  (HA HA HA HA) ...  busted!   The one nurse was like "you should have called us, now you broke it" ...  um, no, it was broke before we even got here.   So anyway - then he figured out that the chair, on the other side of Nathan's bed, pulls out into a *bed* ...  btw, he fixed the couch.  But I'm not touching it.   It's staying a couch... LOL...

9:40 PM:  So the news from the ultrasound is that everything looked relatively normal. There were a few things that were non-specific and they just weren't sure what to make from it. 1: his gallbladder was dilated and distended more than they would expect. But there were no stones. 2: there was a small amount of fluid around his heart - but it's not raising the alarms amount, just some red flags amount at this time. CT scan - it doesn't sound like they are going to do it tonight. They are going to keep him NPO tonight and they are trying to figure out what's going on. They said he could have some ice chips. So he's had a few of those but he got REALLY upset. He had been telling us he was hungry every 2 minutes and telling us he wants chips and noodles and soup and soup with noodles.... and at one point he told me to open his room door, so I did. He told me to get his dinner tray. I couldn't. Upon hearing that - the nurse took it away and he started crying HARD. It was heart breaking .... but he took a couple ice chips and is happy with that

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