Thursday, August 14, 2014

Mystery Diagnosis * Day 4 *

1am - spiking another fever.  She barely had the thermometer there and it was 104, I have a feeling it's much higher. We'll see in a half hour or so when they re-check his temp.

The temp at recheck was higher, over 104

7:50 AM Update: We actually managed to get some sleep last night.... DBcame up last night, I guess he got switched to a new team at work and his days off changed. So he has today and tomorrow off. So he's staying up here and helping out with Nate. (:::crossing fingers he can go home by Friday:::) Anyway ... last night was pretty uneventful. He started spiking another fever - which at this point I can almost time when he's going to start going back up in temp. The tylenol which was initially helping doesn't seem to be touching his fevers anymore. The only thing that is bringing it down is the ibuprofen and ice around him. Then we get it down to low grade and start the whole process a few hours later. He hasn't thrown up since yesterday afternoon, but he is also NPO now - which he is super pissed about. A few of you have mentioned how he looks swollen in the photos and I brought it up to the DR. She said that in his labs his protein is low and that would explain the fluid around his heart and his swelling. Doctors haven't been in yet this morning. Last time I saw them was around 1am. Not too much else going on at the moment to update about. ;/

8:45am ..... One of the Docs came in for a minute. He said they were consulting other people for ideas on what might be going on with Nathan. They are trying to be methodical about the testing and doing less invasive stuff first before doing other things. They really thought (or at least this doctor) thought that getting his bowel cleaned out would really be the turning point for him. But it wasn't. They are at a loss. It's hard to see them (the doctors) at such a loss while he's just in pure misery. Wish we could just take a magic wand and he'd get better ....

9:30 AM:  Daddy posted this on his FB .... Poor Nathan. Brakes my hart to see him like this

10:15 Update ..... One of the doctors just came in and said that with his imaging yesterday and the consulting other doctors this morning .... they are curious if it might be his gallbladder based on where his pain is (when they push on him) and the dilation and that his gallbladder is distended ... and both those are more so than normal.... and then I guess the cystic duct of his gallbladder is sludgey, and it's very abnormally shaped... he could have had a stone, and the duct could be blocked, and they saw some inflammation on one part of his gallbladder.... so they are going to have their meeting this morning, decide if they want to do some imaging thing to find out if his gallbladder is blocked, if it is, they are going to do surgery to remove it ... if it's not, we got to keep looking. (and by we I mean they, the doctors)

10:30 AM ....  I was trying to get pictures where you could see the difference in his skin color. Upper body is really red and his lower body isn't.

11: 52 AM ........ So waiting on the doctors to round on Nathan......

12:30pm Update: So the doctors just rounded. Still have to be in isolation because he has a cough, and until that is no longer an issue, we're in isolation. They want consults with the General Surgery and GI doctors to come see him (again for the Gen Surg but for different reason) ... and they want them to come see him ASAP not later on tonight. If they think additional imaging is needed - they want to get it done today. More blood work is ordered, mainly to see how it's trending compared to his blood work the last couple times. They think the gallbladder thing is a possibility. They also mentioned Kawasaki disease and Porphyria (which is something they were considering with Dennis also, not long ago.) They may have muttered a few other things that we didn't hear. Kawasaki seemed to be the main one. Nathan is resting right now and Dennis and I are trying to get some lunch. He went to eat and then I'm going so that we're not eating infront of him right now. DB and I both when out in the hall to pow-wow with the Doctors and I heard Nathan screaming. He had been sleeping but our lack of being there apparently woke him up - so I explained to him what we were doing, talking to the DRs and such. And Mom they said his pancreas labs looked good and they checked it on ultrasound yesterday too, and it was normal then.

Nathan whines about getting new stuffed animals while he's in the hospital.  It is one thing that really cheers him up.  

So I went up to the gift shop to see what they had, and took some pictures  I let him go through the pictures and he focused on one thing .... 

Well, Grumpy Cat was a tad on the expensive side.  So we ended up going with one of the back ups...  the green dragon ... 

So ... I go and I check out, and we're talking and I ended up putting Grumpy Cat on *hold* and gave them Nathan's name .... well, the manager goes back into the office and you hear her say "Did you just buy the green dragon?"  ... um... yeah ....  "Well you can exchange it for something else because an order just came though for him for the green dragon."  LOL...   Next Stuffie up he wanted, was only four dollars less than Grumpy Cat - so he got Grumpy Cat!  Lil' Stinker.  

And he got the Green Dragon from his Uncle, Aunt & Family :)   THANK YOU!!!   (Daddy needs to share the rest of the pictures of him opening it so I can post it)  <3 

Then Ultrasound came in to do his ECHO..... they were actually in there when I came back from getting lunch and the gift shop .... 

5 PM Update .... so GI and Surgery both basically said ... "we don't think this is the root of the evil" with the gallbladder. They don't think it's operable either, at least not at this point. As for more testing, I don't know and they aren't sure. They are doing more blood work this evening. ummmmmmmm,,,,,, they had come in earlier and told us they were going to order and ECHO on his heart, so they came and did it and everything looks normal other than the little bit of fluid around his heart. But his heart otherwise looks marvelous! (Sigh of relief, cuz that was a little scary when we heard about the fluid around his heart) ... Um..... once surgery/GI says no more testing (if that's what they say which we're pretty sure they will the way they were brushing it off as if it were nothing.) ... then he'll be able to eat again. They are going to get him on some specific antibiotics specifically target his gallbladder/liver inflammation ... He did go a few hours after the ibuprofen wore off where he didn't automatically spike another temp, however he is now. So he's really grouchy and crazy super miserable ... he doesn't want to be touched, doesn't want anyone moving his blankets ... nothing...And he DEFINITELY does not want Vaseline on his dry chapped peeling lips ... that got more of a fit then the blood draw ... the lab tech came in and he yelled "AGAIN!?"

This is how an Isolated Mommy feels......... 

6:45pm ..... just told that he's having a CT scan tonight. I was wrong earlier when I said GI and Surgery had kinda blew off the gallbladder idea. It was Surgery ... GI came back in after I updated and looked at him and said "I think surgery needs to see him" and I said "Surgery has already been in here and basically said they weren't concerned." ... the intern came in, then someone else - a fellow I think - Dennis said she was really snooty and everytime she pressed on his belly he said ow so she said it wasn't his gallbladder causing it. Then the Resident came in and he was pushing and he wasn't getting reactions from him. At one point he said OWIE right after i said something - and he looked at Nathan and said "I wasn't even touching you" .... @@ ... he's 7, geez. So then GI came in, the intern or fellow came in before anyone from Surgery did and she was asking us questions and various other stuff... then she came back with her resident and she was super nice... and she stood up and said "I think surgery needs to come look at him." The thing is - he doesn't give pain ques like everyone else and he has a hard time pin-pointing his pain.  So anyway ...... CT scan tonight, with contrast both orally and IV .... and if he throws up the oral contrast, they said at least they tried and they'll just do it with the IV contrast.

When I asked about the ECHO ...  I was told other than the little bit of fluid around his heat, it was the most normal ECHO...  LOL ... good, cuz the fluid - however little - scared me! 

11 PM:  Finally came and got us for the CT Scan.  They had given Nathan the contrast about an hour and a half earlier.  Along with nausea meds about a half hour prior to that.

When we got back to the room, all three of us crashed.   The DR came in to give us the results, and we were all...... passed...... out.  She commented (Friday) how it was nice to see that we all got sleep... LOL...

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