Update on Nathan....

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We ended up getting Nathan home and things were hard for about 2 weeks.  Every diaper change, every time he even THOUGHT we were going to change his diaper, he would start to get anxious and cry.  The diaper changes were painful for him.  We managed through them though, and by the end of the time he had the tube in we'd start getting the 2nd diaper on him and we'd go "all done" and he'd instantly stop crying and go "all done" himself.  Very cute, but always heartbreaking. 

He immediately started to potty train after the tube was taken out and he is a Potty Training CHAMP!!!  He is peeing in the potty very well, he's wearing underwear all day when he's home and he rarely has an accident.  The only thing we can't seem to get him to pick up on, doing stinky in the potty.  Once we get him to understand he has to do that in there, he will be potty trained completely.  But right now he's got his potty jar (treats when he goes) and a pile of underwear he loves to wear, and he's happy. 

Both Nathan and Noah had appointments with orthopedics ...  we were told by the kids Ped that Nathan's records say that his Ortho in WI said he had Scoliosis... and then the radiologist based on the x-ray said he did not.  So I was all confused.  Good news is, third opinion .... he has a nice, straight back... no scoliosis.  2 against 1.... I'm removing it from his diagnosis list.  However, Cal does have it....  phhhh ...  Noah's tone issues are still really bad.  She said she doesn't see any point in casting this feet because she was sure it really wouldn't solve the problem.  This goes beyond tone issues in his feet and ankles, and lower legs.  He has pretty bad tone issues from his hips down.  She also noticed that he had the shorter leg without even measuring him.  So she wants him to see the skeletal dysplasia team.  They also want Nathan seeing them for his tone issues, where Noah is extremely stiff, Nathan is super flexible.  They also want Nathan to see the Neurodevelopment team because of his speech issues. 

As for Nathan's HGH shots, he's doing really good.  He knows he has to have that before bed, so he asks for it some nights.  This one night, he shocked me!  He saw that I had the easypod out warming up, and he comes up to me, he crawls up on my lap, reaches over, next thing I know he has the paper backing off the needle container and is handing it to me.  LOL...  apparently he was ready for it.  So I ask him, and then he gets up on his Dad's chair and leans over the back of it.....assuming the position!!   So I asked Calahan to come take pictures because I know some friends and family have asked.  Now, we have to give it to him in his bottom because that's the only place that he's got enough fat build up so .. I blocked out some of it ... but here he is that night... 

Here he is assuming the position ... he actually started to take off his clothes when I wasn't moving fast enough

 we drop one side of the diaper and no one ever sees the needle, you push a button on the top and that electronically puts the needle down...

 This is while the shot was going on...

 Afterwards .... he gets to put the needle (in it's container) in the sharpie box...

 And then we have to put the whole thing back in the fridge ...

(I apologize for my husband's messy desk! LOL...)

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1.03.01

4:30 AM Update on Nathan....& 8 AM Added

After dinner last night, he kinda took a turn.  The IV had been unhooked (not taken out of his hand, just unhooked so that he was not connected to tubes on that hand) ...  and he was doing so well after eating.  Then he was starting to hurt, and you could tell.  He started to complain about the Pulse/Ox on his left hand and the IV in his right hand and the lead wires connected to his chest, he couldn't get comfortable and he couldn't move around because of all the wires and tubes....  there was no calming him down.  They brought in pain meds for him, some liquid Oxycodone and liquid tylonel.  He took both like a champ, but the last little bit of tylonel made him gag.  I ran off to find something in the linen closet outside his room that they give access to the patients & families (xtra pillow case I think) and I came back in, he was throwing up.  It was all over again, so we cleaned him up, changed his gown, his pillow... luckily it didn't get on anything else.  But he had just thrown up ALL his pain meds.  So the IV got hooked back up, and the anti-nausea meds were given again, and then after a little bit we gave him his pain meds again, and on top of that.... right after he took his pain meds, he feel asleep ... thank goodness cuz now he's just MISERABLE!!  ....  and then about 5 minutes after he falls asleep the nurse comes in and says his HGH shot just came.  Oye vey ... seriously?   We figured he'd just be skipping it since we forgot the easypod at home.  Nope...  So she ended up coming in about an hour after he fell asleep and did the injection in his leg.   He did good.  Went right back to sleep after. 

At 4:30 am ...they just came in to do his vitals and such, he is in so much pain he just doesn't want to move.  In a way that's a good thing, but it's also a bad thing.   So what's going on right now is that he's got a tube from his bladder to the diaper, a type of catheter...  minus the bag.  We're double diapering him.  The inside diaper, holds the dressing right now for his penis, cuz it's still bleeding ... they are suppose to be cutting a slit in the diaper so that if he poops, it doesn't get on his penis, but they aren't.  I'm going to ask them to start doing this in the morning because I would hate to have to clean that right now.  And that way, it will also be support and not so much pressure on him.  Then the outside diaper is used to catch the urine from the tube.  He's going to have the tube in for 10 days to 2 weeks, then we gotta come back and get the stitch (or stitches) out.   He has a lot of stitches from the base of his penis to the tip, but they managed to get the urinary tract to the tip (yay!) ...  I don't know what we are going to do about school right now.  His first day is suppose to be Wednesday but I don't know that there is any way he's going to be able to go at any point this week.   The only thing I can think of is taking him for an hour or two and staying with him the whole time cuz I mean you guys just have no idea.  I just feel so bad for him.  On one hand I'm regretting getting it done, but it had to.  His urinary tract was coming out where the penis meets the body, so it had to be done :(   Anyway ...  he's awake, and shaking cuz of the pain and he just wants his blanket on him (nothing else) ...   He's still mad about the Pulse Ox being on him and the IV ... he's got something on each hand, and he doesn't like that at all....   anyway ...  going off to play of Facebook or something.   I have considered crawling in bed with him but he doesn't like any sort of tension on any of the cords (who can blame him) and so I just don't want to mess with him.  So I'm just sitting right next to his bed, if he wants his head or back rubbed or anything.   I'm not convinced they are going to let him go home today.  :(

8:00 AM 

Well, the Docs came in this morning, did their rounds and said he's going home.  The nurses are going to come take out his IV soon (I hope) and they have to call the pharmacy and get a roll on his meds ...  as soon as the meds come up then we can go home, but they expect that to take a few hours.   We're completely out of money now though, and this hospital doesn't help AT ALL with food for low income families...  so, we might have enough to get something small this morning, hopefully we can be home by lunch time.  But basically we went through every penny we had paying for hospital food.   If we get home around noon though, hoping anyway, that way Nathan can get comfortable at home before the older kids come home, and hopefully Bubby will NOT jump on him... and hoping Nathan will be less anxious ... every time anyone walks in the room right now he totally directs them OUT THE DOOR... LOL.... like "Leave THANK YOU" ... there was someone who came in to switch out the crib of our expected neighbor last night (who never came in, :x) with a bed, and Nathan got really pissed after I told him she couldn't take out his IV because he kept asking for her to take it out.  (this is all gesturing for him that we can read, cuz he doesn't talk remember) ...  So yeah...  here is hoping we'll be on our way home soon.   Bleeding has finally started to slow down, he hasn't thrown up since the med fiasco last night when he was in pain and upset ...and he's tolerating the oral meds just fine.   Hopefully he eats great for breakfast!  Anyway ... that's the update! 

 

Nathan's Surgery ...at the hospital too...

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Daddy, Nathan and I are all hunkered down in the hospital room right now, watching Blues Clues and being AMAZED that he's actually eating (though it's only chips and carrots right now, he drank some WATER ... and now is cuddling his drink bottle with his milk in it) ...

He is doing a lot better, right now, then he was a half hour ago.   YAY!!!

We left the house this morning, took the typical riding in the car picture and got ... 

PLEASE... No Mammarazzi today .... 

It was a nice drive, but the traffic was unbelievable...  

Here are a few pictures of Seattle ... 

But we got to the Clinic/Hospital with a few minutes to spare. 

 We stopped and admired the garden for a minute before coming in...

We got our badges, and checked in and then went to the surgery desk. 

Got a beeper for the day, and eventually got taken back.

He of course melted down when we got him in his gown .... so he got to play with the lights and it eventually calmed him down....

He tried to watch out the window for awhile...

Then decided to cuddle with Daddy again...

We got taken back about 9:30am and he wasn't taken back to surgery until about 11:15-ish.  We were told it would take about 90 minutes, and about 2 hours after they walked away with him, we got the news that they were done around 1:20...  Dr. Burns came out and told us that everything went well, that he ended up with a LOT of stitches, and he couldn't do the tube (open catheter) like he wanted, but it was basically the same thing that he ended up doing, just a different tube.  The tube will end up being in for about 10 days to 2 weeks, and we'll have to come back for his post op appointment of course.   It wasn't until after 2 that we got beeped again so that we knew what room he was in.  Once we got that info, we were given directions on how to get there, and then we walked to his room, and just as we were coming down the hall he was getting wheeled in his room. 

He was just basically this little zombie who wasn't moving or making a peep other then to whine at me before he threw up.  He ended up throwing up twice, before they got the anti-nausea meds in him.  He just layed around for longer, watching cartoons ....   Nana and Papa sent him a Purple Dinosaur that you can warm up in the microwave, and he smells like lavender.  AND a big ol' Froggy balloon which he's insisting stays in his bed with him. 

Daddy went and got snack (chips) for him and I and Nathan looked interested, so Daddy offered him one...

Next thing we know he's shoving them in his mouth....

Then his dinner tray came and boy oh boy .....  he proved to be one HUNGRY HUNGRY boy!!  I think he ate the best he has EVER eaten! 

He ended up eating ALL those carrots, and about half the pasta, and several chips!!  And he was sooooooooo happy to get chocolate milk in his drink bottle!  Now he's sipping on his chocolate milk and watching Blues Clues.....  he has left his IV alone (YAY) unlike last time when he had it pulled out practically soon after I got back there with him...  and he's even leaving his leads on and his pulse/ox monitor.  He's being a really good boy and we're really proud of him, and SO HAPPY he has come out of the zombie like state he was in!! 

Anyway, I'm going to close this blog for now and share it so family and friends can catch up and be updated.

Thank you everyone for your thoughts and prayers!!!

HGH Training....

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Yesterday (9-16-10) we traveled to Tacoma to Mary Bridge for ... our training with the HGH device.  It marked the start of his daily shots, and even though I've been emotional and nervous we were anxious to get it over with AND get it started to help him grow.  Everyday counts....

We packed up the easypod and the training medicine cartridges, a few other things and hit the road.

We got there with plenty of time ... our appointment with the trainer was at 1:30 and we got there about 1:15... so we walked through the garage and into the clinic... 

We went in the clinic and into the elevator...

Nathan often has to squat on the floor in order to ride in an elevator.  Also you can see the ridge in his skull because of his recent hair cut, those cranial imperfections are more noticeable....

So we rode the elevator up to the 3rd floor, only Endocrinology is on the 2nd floor.. oops ...  so after Nathan made friends ....

We hopped in the other elevator, which was really cool.....  it had a glass back and a changing mural on the back wall, so as you moved, the picture changed... 

Then Nathan walked down to the raccoon department (Endocrinology) .....

The cool thing about Mary Bridge is it has these neat mosaic sun catcher circles in the windows... 

 And they have a bead and tile mosaic wall that I like a lot...

Hanging out in the waiting room because we were early, but our trainer was running late because the family before us took 2 1/2 hours for training.  So we just kinda hung out in the waiting room .... 

 There was a Russian family who spoke very little English and they were playing on both computers.  The little girl was coloring a puppy and Nathan crawled up barking, it was funny, so the Dad invited him to sit next to the little girl ... he said "come sit" to Nathan, and he did, I was impressed.

After they got called back, Dennis and I took turns playing with Nathan on the computer until we got called back.  (Course, Dennis didn't take any pictures of me playing with him, lol)

So I was planning on taking pictures during the training, but we were both involved in the training so I didn't get a chance to.   But we were done in about 45 minutes, and even though the first shot was shocking to him, he did really well with it.  He ended up scoring an Elmo Car Wash toy that he got home and just loved!  Then scored a $45 Buzz Lightyear from Nana ... He got extra cuddles from Mom... and he actually LOOKED at the camera and SMILED!!!

Night 2 of the shot: We took him in our room away from everyone in the living room .... as soon as I put the easypod on his little rump he clenched up, started the injection and he cussed me out in gibberish until it was over.  But he didn't cry... not even a little.

Night 3 of the shot: We ended up doing it in the living room this time, and it left us questioning if we did something wrong.  When I put the easypod on his behind, this time, he was fine, but when the injection started he clenched up MAJORLY and started to cry :(   Broke our hearts.  It totally left us questioning if I had it positioned wrong, if maybe we hit a nerve.

Tonight is Night 4... we can only hope that this gets easier for all of us.  In addition, we are leaving early in the morning for Seattle Children's because Nathan is (crossing fingers) having surgery (2nd stage of his hypospadious) tomorrow.  There is some question if maybe he won't because he's had his ongoing cold for several weeks.  But we're going to pack up and be ready and hope that it happens so we can get it over with.  I will try to update as soon as I can on it.  I may end up doing short updates from my blog application on my phone.