Thank You Everyone!!

. Thank you to EVERYONE who sent gifts and cards for Nathan!!!   Every single one is appreciated!!!

 All his cards up at home....  

His Cub Scout Pack made this card while we were at the hospital and missing an event....  they even got Chuck E Cheese to sign it!!

Picture of Chuck E Cheese signing Nathan's giant card!

G-Tube Surgery - Day 3 & Going Home...

.  You can read about Day 1 (Surgery Day) and Day 2 in the hospital.

We knew (based on Nathan's history) that this would probably be the day we were going to go home.  It just all depended on how Nathan was .....  he ended up sleeping really late.

FB:  So .... last night the nurse (love this nurse) put the Pulse Ox on Nathan because of the fact he's on Oxy .. just to keep an eye on him. So .... literally a half hour ... later... he .... moves, and I see a flash of a red light. I just thought it was his hand moving. I see the light by the rail of his bed, again, thought it was his hand, but I notice that his monitor was "?" ... lolol... nurse comes in, I said .... "He ripped it off didn't he" ... she says "he sure did" ... he's sleeping btw. I laughed and laughed. I said . "You are going to have an interesting night." I woke up this morning ... it's on his toe. HA HA HA HA ...

While Nathan was still sleeping, I ran down to Starbucks to get breakfast, because...... unlike him, I was up at 6am again.

FB:  Creepy I am still tired story of this morning.... I went to Starbucks to get some breakfast. .. When they handed it to me it had my name on it. I never gave them my name. Then I realized I was wearing my parent badge.... with...my....name....

He would wake up for a minute, and go back to sleep........

He ended up sleeping until almost 10am ..... so he slept about 12 hours exactly - with getting woken here and there through the night to get pain meds.

And when he did finally wake up .....  he seemed and looked SO MUCH BETTER already - than he had been the day before.

We sat up and he ate his breakfast ....

FB: He is up! He looks better today! He slept 11 to 12 hours (interrupted) but after eating and meds he is at a 4 on the pain scale! Yay! He is not lost in the tablet to escape the pain. He is watching cartoons!

Doctors came in and told them how he was doing ... and got the clear to go home!  Made the call...  Daddy was off of work for a DR appt so after the DR appt they (Nana & Daddy) headed up.

I tried to get Nate to get up and walk but he didn't want to.  When I did get him to walk - he walked like a little old man all hunched over and shuffling his feet :(

When we got the news they were almost at the hospital, we went out to surprise them...

When they were about to get into the elevator, I hit the button and Nathan walked in, and the doors shut.  (First time he has ever been in an elevator by himself AND I knew Nana and Daddy were right there waiting.) ...   I heard my mom go "WHAT are YOU doing in there?" LOLOL...  it was cute.   So when they got back up he went back in the wheel chair ...

He had some lunch, and we packed up....  got stuff out to the van.  Then it was time to head home.

Had chocolate milk for ride home (that was about the only thing he has been drinking)

Took the ferry home, and before getting on the ferry, we got Subway....

 We got home around 7ish ... and just got stuff inside, got what we needed un-packed, and pretty much all went to bed.   We were all tired.  :/

G-Tube Surgery - Day 2

Part One:  Can be read HERE .....

Nathan - who had been begging to eat and drink since he got out of surgery the day before, and had been promised that as soon as the DRs came through - he would finally be able to eat ... first soft food, then build up.  He woke up at 5:50 AM ....

We were told that the DRs come through around 6AM and turn on all the lights because they don't care.    Er...  K.....     Well, I guess Nathan's internal alarm was set .. he was up and waiting ... and ready ....

He had been hooked up to the drain all night......  this might have saved him from throwing up and at the very least feeling sick .....  however, they set up the drain and just let it all fall off the bed - so the bag was on the floor - etc .... the drain tube was just hanging there ... pulling on his G-Tube, and pulling it so much that it was pulling out (not coming out) .. just saw more of it than I should have.

I asked the nurse "Is that normal?"

She said  "oh yeah, it's fine."

Um....... I don't believe you.   I pushed it back in, the way it was supposed to be, and then I set up the drain hose and the bag and such so it wasn't pulling.   I did this... not the nurse.

6AM came and went....... 7AM .....  8AM ....  every ten minutes I had to deal with this ....  watching his tablet to reminding me so subtly (signing EAT) ... that he was hungry.   Yes Nathan, I know ... as soon as the doctors come you can eat.....  where are the doctors???? 

FB: 7:30 AM this morning. ... Nathan had been up for about an hour and a half. He is telling me he is hungry. DRs have to come in and clear him for clear liquids. .....

The Craino Facial team came to see him .... to check on him, but they couldn't give him orders to eat.  They came about 9AM .....

So I go out to the nurses station and I am like....  "Um.... do you know when the General Surgery team will be coming around because I have heard 100 times how he's hungry."

Nurse looks perplexed ........ "Well... um.....  they didn't see him?"

I'm thinking ...... DO YOU HAVE ORDERS FOR HIM TO EAT YET?   ... "No the Craino Facial team has been in but not GS team who can give the orders for him to eat."

Someone I don't know or seen before pipes in from across the desk,  "I'll call to see what is going on but they usually have been by already." .... well yeah, it's like ... almost 10am and I AM STARVING but I won't go get food yet because I don't want to eat infront of him....... oh and by the way ........

Yep ......  it's my birthday and I'll spend it in the hospital with my kid if I want to.... I don't want to ... but it's what it is.....

So this unknown person calls and hangs up the phone and says....  "For some reason he wasn't on their list today"

I'm DUMBFOUNDED ......... shocked......... and I don't know what to say.

She continues .... "He has appointments now so he can't come but he's going to send the Nurse Practitioner" ...  Um.......  Seriously????  

So we waited.  Meanwhile....... he's telling me he's hungry every three minutes now.  I'm not even kidding.  Three minutes.

Let's address the fact that my child is NAKED.  Well with a diaper.  He refused to wear the hospital gown, and preferred to be naked.  Something he does not normally like, or even tolerate.  He likes to be clothed, with long sleeves and pants....  and he does not like short sleeves ... and he certainly does not like nakedness....

FB: It's 10 AM and Nathan STILL hasn't gotten the OK to even have clear liquids ... (just as I'm typing that - they FINALLY come in) ... so he JUST got the okay to start clear liquids and then eating ... whew....

FINALLY the NP came in with like, five other people.....  and she's PISSED.  She's pissed?  What about me??? I'm pissed.  Apparently people forgot about my kid.  Didn't just .... ya know....  mess up, FORGOT ABOUT HIM.

So she sees the drain and looks at me like I hooked him up to it.   "Why does he even have that?" ....   am I a doctor?  I didn't order it.   How the f*** am I supposed to know???

I told her about it popping out, and how I asked the nurse about it .... and how I pushed it in and set it up.

She says "You don't want ANYTHING EVER pulling on it like that" ....

Well, yeah...  kinda figured.

She's steaming pissed.  Seriously - could see the smoke coming out of her ears.....  PISSED.

Now I find this amusing, cuz I'm weird like that.   Why is she so pissed?

Anyway ... so her minions that are with her say "Oh well should we unhook it?"   she says Yeah .. like House would, ... you stupid people YES why do I have to tell you....   so they disconnect it.

Okay ....   so she writes the orders for him to eat.

One person is telling me "We'll start him out with liquids and soft foods first, and slowly go up from there as he tolerates it." ....

Right after he gets done telling me this........ she turns around after she's done pounding whatever it was that she was pounding in the computer..... and says "Okay he can eat now" ....  followed up with "He can have whatever he wants." 

I said "So we're starting off slowly with liquids and jello and that sort of thing."

She looks at me like I'm an idiot and says... "NO, he can have whatever he wants." 

Ooooooooooooh ........... k.......... then.........

So they order him a tray and bring in some jello for him to eat.

Tray comes and he wants BACON ..... I'm hesitant - I think he should start off slowly, sure he kept some jello down.... FIVE MINUTES AGO - I know this kid.   He has a rough time after surgery ..... but he wants bacon ..... BACON BACON BACON ..... BACON....  so he had bacon....  I am a caver ...

He has an audience.....

So when he got news that he could eat, I ran down to Starbucks and got me a birthday breakfast....  put it aside until he could eat.

After eating, and getting disconnected from pretty much everything..... I told him it was time to get up and take a walk.  He was all for it.  My cousin had sent him a $25 Gift Certificate to go spend in the Gift Shop.

We got about.....  hummmm....  well we got to the elevator and he did okay, we made it about half way down the Train Hall (for those who know the hospital) ...  and he was done.  He said it hurt too much.  So I picked him up.  Carried him to the Gift Stop where he walked around and around looking for something special.  I saw this ginormous blue and purple snake in a basket, and I looked at the price.   I told him - "you can get that if you want" and it was the only one in the shop.  He saw it and fell in love.  Then we went and got a wheelchair, got my lunch from the cafeteria since we were right there...  and walked back to the room with him in the wheelchair.

A lot of his loveys that were by his head got downgraded to his fan club for a little while.

We also picked up these for Nathan and Kaedyn .... for when they start losing teeth.  They both have already "lost" four of their teeth .... (pulled) ... but ... I thought this was pretty cool.

It was about now that his pain was high (around a 6 to 8) ...  I could just tell - between over doing it on the eating and the walk - he bottomed out.   Now, they had been trying to push us out the door the whole time we were there.  "Oh you can go home tomorrow" when he was out of surgery.  All day today was "Oh well you can go home later today."  I told them if we did - it wouldn't be until late, but I highly doubted we were going anywhere.   No one believed me.

So we get to this point.  The tray they brought in was something that just ... yeah.   He wouldn't eat.  So she ordered some grilled cheese.   He ate some fruit but didn't touch anything else.   Then for dinner ordered butter noodles and fruit ....  he didn't really touch that, either.

FB: (first pic) Chilling and drinking chocolate milk. ... He over did it eating. ... Now he isn't feeling well. .... pain at a 6

So we were struggling to get a handle on his pain - and just couldn't.  Every time he was asked, it was a 6 or an 8 ... but he wasn't *acting* like it because he was using the tablet as an escape.  If I pulled it away he would start crying and saying "owie" and "it hurts" ...

So the Doc on floor came in between lunch and dinner and listened to me because we couldn't get a handle on his pain, I even downloaded a different face scale on my phone because the one they had looked like this ....

Which is hard to really differentiate - especially  4 to 8 .... so I used this one off my phone...

Which worked a lot better because I explained to Nathan how the faces were feeling and he was good from there.   So I trusted that a lot more.   But he was still between a 6 and 8.

Nathan also started to complain about his belly hurting bad and wanted an ice pack, so we got him an ice pack for his belly.

So the Doc came in and I was talking to him ... and he says "I don't think you can go home tonight."   I was like... ya think?

FB: Just got news we aren't coming home tonight for sure. Nathan has consistently been at a 6 for most the afternoon for pain and so they are upping the dose of Oxy for him and how often he gets it ... on top of the tylenol and ibuprofen schedule ... he also is sporting an ice pack on his belly right now and he's starting some nausea meds.

FB: Nathan is hooked back up to the IV for tonight ... he got his dinner tray and just outright refused to touch it. HOWEVER ... now he is picking at it and I'd rather he be picking at it than refusing to eat. It has a bunch of his favorite foods, pasta, strawberries and watermelon, oranges.... he did drink a whole carton of chocolate milk shortly prior to his tray arriving though. But he'd say "I'm hawngry" and then eat one noodle and go "I'm done" and he did that twice until I just left it there and told him to pick at it. So that's what he's doing. After he's done picking, I am hoping he has a nice wet diaper or will pee a lot for me. ::: fingers crossed :::

He hadn't had a wet diaper most the afternoon either even though he was drinking...

FB: So ......... Nate's IV was just leaking all over ..... yep...... that just happened ...

There was a port open ......

So he pretty much spent the evening stuck in his tablet to help him just deal with the pain.   (Escape the pain) ...  for the most part.  He didn't want to walk, he didn't want to move - seriously - he didn't want to move.

I ordered Chinese for dinner because I didn't want to leave the room, didn't want to take him with me to the cafeteria - even in the wheelchair....  so I ordered the Chinese ....I just had to take a very short walk to get it.  But I had gotten me a piece of pie for my birthday at lunch.

It wasn't that good :/    .....

Nathan crashed between 9 and 10 ....

G-Tube Surgery - Day 1

We didn't have to be at the hospital until noon.  It was a rough morning.  He kept asking to drink and eat.  He could drink clear liquids up to about 9am ... and that was it.

Nathan and Liam both decided to sign.

Nathan started out on the N on the end of his name, I thought he was going to write his name Nathan backwards.  But he started out on the N all the way to the right.....  and wrote nataN backwards (writing right to left)   he forgot the H ....

I went to take his picture before surgery but he was upset, and he didn't want his picture taken.  So Liam photobombed....  

After we got settled in the waiting room (we were early) ...  I let him watch YouTube on his tablet...

And since it helped keep him calm and not freaking out before surgery .... that's what he did.  He did NOT like it when I took it away to take off his clothes and change him into the hospital garb ....  and I had got get dressed up in scrubs to go back with him ...

I wanted to get a before picture of him before his G-Tube was placed.  It's hard to explain just how tiny Nathan is.  With clothes on, it is hard to see but here you can see how he really doesn't have an ounce of fat on him.  He is nothing but skin and bones.  He eats all the time.  He just burns the calories as soon as he takes them in.

I took him back for surgery and it was tough.  Got him to lay down (and he was anxious) ....  he was whimpering a bit but not crying.   They put the mask on him and asked him to take some breaths .... it took longer than I expected, and the last 15 seconds or so he was kicking his feet really hard trying to fight it.  :(  

They had said that if they felt they needed me they would call me back to recovery, but I figured they wouldn't because they hadn't for the surgeries prior.

But the DR came out - said everything went wonderfully ....  they only difficultly there was - was - that his large intestines were "swollen" or "gassy" ...  and he had make an extra incision to be able to move them out of his way.   Everything else went great.  

But they did beep me, figured it was just to get his room number.  But they told me to go back to recovery and gave my mom the room number.  So these are the first pictures of Nathan I took after his surgery while he was in recovery... and he was already telling me (signing) he was hungry and thirsty.

After we got up to his room, I put the gifts together that we brought.... there was a gift already delievered from the gift shop....  it was pretty awesome :)

I had gotten some balloons too on the way to the van, then I moved the van and brought all our stuff up to the room.  I wanted to make sure he had balloons to wake up to.

Lovely view right?

After surgery, Nathan slept most of the rest of the day.  Nana left around 7pm... he was still sleeping.  I think it was around 8 or 9 that he woke up ....   and then we opened up gifts.

They came in with this - saying they are going to drain him over night.......  

He did okay - pain was an eh .... mostly a 4 ...   on the face pain scale.  But he slept.

Quick Update

.Nathan's Surgery went well ...

First off ...... we didn't have to be to the hospital until noon .... we got here early ...  but ....  Nathan slept in the car.  Of course we got the "I'm HAWNGRY" ... lol...   It feels terrible telling a kid who has so much trouble gaining weight he can't eat... but he can't eat.... so he slept instead.....

Nathan didn't want his picture taken before surgery so Liam photobombed ....

So the surgeon came and talked to us and said that the surgery went well that the only issue was that his large intestines were swollen (and then he said "gassy") ... and he had to make an extra incision in order to move them so he could see...  but everything went well.  That he didn't want the tube used for 1 to 2 weeks...

They called me back into recovery because they just weren't sure what he was trying to say or if he was in pain or what....  

Anyway - I wanted to update that he's out of surgery and that he's okay.   I will update when I can but it maybe a few days to really get the good blogs up from his hospital stay and all that .... so bare with me.  I'm alone at the hospital with him.

Also, we have a fund raiser going for the boys - PLEASE check it out.  Please share it on ANY social media you have, even that simple act will help spread the word!!    http://www.gofundme.com/4t7h6c   <--- just copy and share that link!