Monday, August 18, 2014

Mystery Diagnosis * Day 7 * (Day 8 at home)

As I am writing this, day 7 was yesterday and we've been home for (a little more then) 24 hours.

Nathan was fever free Saturday night and Sunday morning.  He had run that 99+ temp Saturday evening, before going to sleep for the night.  I also asked for them to hold off on the ibuprofen because I wanted to see if it would actually spike higher, and it didn't.  It actually resolved itself.

Also, at this point ..... everything a DR or Nurse would walk in, he would either SCREAM ... or SCREAM and HIDE ... or just throw his covers over him (hide) and disappear.   And what's great about these DRs is that most of them would totally play along.  "Where is Nathan?"  

And when the nurses would start messing with him to do his vitals he would either got "HEY" when they went to move his blanket.... or say "I TIRED" or "I SLEEPY" ... LOL...  or maybe even "I COLD!"  lol

They all thought he was the cutest thing and when he was feeling better and smiling, they all melted.

Anyway ....

Nathan woke up and was just not acting well.  No fever, which I was a bit afraid of.   He woke up grouchy and just wanted to lay in bed and be left alone.

This is my attitude about being in isolation for 7 days.......  I hate having to ask for ice.  I am an ice crazy nut and have to have a lot of ice in whatever I'm drinking (unless it's milk or hot chocolate).... I hate having to depend on other people...  I don't feel like hitting the nurse button to get ice .... so I just ask them to bring me a bunch when they do vitals.  Ha ha... 


Breakfast came and he perked up a little bit.  Really ...  he took 3 bites of his sausage patty, and a bite or two of his eggs, but I saw him spit a bite of that out.  He drank his apple juice.
 So I got him up out of bed and got him to do something..  I taught him how to walk around with his IV...

 I also took him for rides around the room on his IV Pole because he just needed some stimulation ....  So we'd do it for a little while, and then he'd lay down for a bit, and get back up and lay down.  He can't seem to handle doing much right now.

But we kept getting him out of bed now that he was feeling better...    and by we ... I mean me...
The DRs came and since he's been pretty much fever free for 24 hours (minus that 99+ fever) ...  they thought he would be okay to go home.  Still don't know WHAT is wrong, but since his labs were getting better and showing improvement, and his fever was gone, they figured home would be much more comfortable for him (AND ME!) ... and we can continue to monitor him from home and with his Pediatrician. So the wheels were set into motion.  He needed antibiotics for his staph that is re-developing.  This time it's not an aggressive treatment, but a direct one.  

Lunch time came around, he ate pickles.  Drank a little bit of milk.   

 Daddy and Kaedyn came to pick us up.

Help!  I'm in isolation and I can't get out!

So excited to see Bubba, I missed him so much.  Look at how big he is compared to Nathan ...  it's amazing how much he's shot up!  Kaedyn is 5, Nathan is 7.   Kaedyn is a very normal - average - child.  Nathan is a very tiny 7 year old.  There is about 20 lbs separating them also.

The boys ... LOL...  wanted to be in the closet.

We finally got paperwork and pretty much ran out of the door.  Kaedyn was checking out the fountain ...  while we were waiting for Dad to bring up the van.  Nathan wanted to get out and check things out too.


 And then, we headed home!  Awesome.......

So here is his Staph progression ...


Today (Monday) ...  Nathan spent a lot of time sleeping today.  He got up for a few hours, and then at noon he came in and crashed for two hours.  He got up for a half hour, and then came and made me (not that it took too much convincing on my part,) cuddle him and hold him for a couple more hours.  He got up for a little while again, and then at 7 (his normal bedtime at home) ... he came to bed.  So he's been sleeping ... a lot.

And that's petty much it ....    there were still some cultures pending for him at the Children's Hospital.  And he has an appointment with his Pediatrician tomorrow.

Saturday, August 16, 2014

Mystery Diagnosis * Day 6 *

6:45 AM Update ..... not much to report. No fevers last night other than the one he spiked right before bed. But none over night. He slept most of the night. They hooked his feeds up last night, started slow to make sure he would tolerate it and then bumped it up to his *normal* rate of 40. He had tolerated it great. No vomiting from eating (slowly) or his feeds, so YAY ... and he doesn't have nausea meds on board either, not since his CT scan. Lab should be making rounds soon - once they do, they'll have all their tests other than the BM (they wanted BM, Urine, Throat Culture, and a bunch of Blood Work...) so as soon as he poops (if he didn't over night and I didn't know about it) then that will be complete. Doc said some of the tests may not come back until Monday. Otherwise, just waiting on them to come round this morning. Uneventful is good though.

Breakfast - He drank about 3 oz of his 4 ounce orange juice box, and a couple bites of waffle. .


Lunch!  Lunch! He ate a chicken tender, and 1/2 a cup of cucumber, and a few strawberries. And a little bit of milk.
He ended up snacking on lunch for a couple of hours.  But the above is what he ate over that period.  He was nauseated both after breakfast and lunch, but managed to hold it down without any nausea meds.  Even though I had asked for some to make him more comfortable.

Someone is feeling better!!  (Overall feeling better)

Day 6 ... finally feeling better. He's smiling and laughing and joking around... it's awesome!


Nana and Papa stopped by.   My Mom brought me some stuff I needed from home... like Nathan's HGH ... since he's been in the hospital SO LONG ... the DRs wanted to get him back on it.  And some other stuff.  She brought me some food that I can store in the room.  

While she was here ...  she wanted to go to the gift shop and get Nathan something that would cheer him up.

Settling down for a nap? Maybe! Watching Despicable Me..... Minions! Finally something other than the Doc McStuffins dvd we have been watching non stop pretty much since Tuesday!

Watching Despicable Me ...  for the first time.  He's not one who likes movies with suspense, it scares him.  But he watched it ..... and watched Despicable Me 2!

Changed Nathan's diaper, and he wanted to pee in the urinal... so I went and got it and helped him up to a standing position and he had to lean heavily against me for support.   So I got him up and had him walk around - he was very unsteady, and cross stepping trying to keep his balance.

But we got him out of the bed for awhile...

Going for a Ride .... on his IV Pole....  


Dinnertime!  He didn't like the pizza at all .... so we ordered him a grilled cheese and so he ate that...  So over all, he had a couple sips of chocolate milk, a couple sips of Sprite ... a handful of fruit .... (his hand, not mine) .... and almost a half a grilled cheese sandwich.  There was a corner left of it....

Thought I would show our room a little bit.  We're in a private room because we're in isolation.

The main part of the room....

The sink/counter area and door....

This is the closet and bathroom

And our view of scaffolding...



Something is making an evil return!!   Looks like Nathan's Staph is coming back :(

Doctors came in and all agreed that's what it looks like, so they made a fun picture on his belly .... ordered a new (different) antibiotic for him.

We'll see what the night holds and what the DRs say tomorrow.

Night 2 with the major Night Sweats..... this should be clue one he's better right here because he wasn't even doing this with his 106 temp!

Funny thing that happened today .....   one of the fellow RSS Mom's noticed this on the Wikipedia page for Russell Silver Syndrome...

Fits so many of the kids.  LOL.....  it's true, should be a sign/symptom of RSS ... LOL...

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"



Yep.........


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


Lunchtime!

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.



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...