Surgery might KILL him........ & G-Tube Stuff ...

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Today we had to head over to Seattle to have a few appointments.  First one was to do the post-op for his G-Tube and do some training.  Clear him to start his feeds.  Then we were doing the VPI Clinic which several tests to figure out if 1: Nathan's palate is moving, 2: if Nathan's palate is long enough, 3: If he needs surgery to lengthen it or anything else.  And then try to meet up with with the supplies Nurse/Nutritionist and get all his supplies to start feeds tonight.  

All the stuff that goes with this one kid for one not fun day to Seattle (for dr appts) left the house at 6 am and won't be home until dinner (or later)

Tacoma Narrows foggy ... I thought it was petty....  

This is the request we kept getting all the way to Seattle .... seriously????  Someone had Skylanders on the brain....

This is how he feels about G-tube training ...

The start of VPI Clinic ...

Nathan and Poindexter....his wolf.  Nana got suckered..

Done with appointments. Got supplies. Headed home

So ... We had his g-tube this morning, was a lot easier than I was anticipating. We got all his equipment before we left the hospital today - Daddy is getting a crash course tonight. He's doing his first feed tonight.

The other appointments were ... odd. Bad news on bad news I guess.

So ... they did a scoping where you can clearly see that Nathan's palate does not completely close. (causes speech issues, on top of other speech issues he has, with liquid and food - spaghetti noodles baby! - sometimes coming out of his nose)

Oh and remember when Kaedyn threw that 2 lt bottle of soda at Nathan and hit him in the face - yeah well his nose did get broken - his septum is all the way to the right side, so they couldn't put the scope up the right side of his nose.  Why is it that none of my kids had major issues (other than Noah's medical stuff and Cal's Leukemia scare) ... until Kaedyn comes along?  Then all of a sudden I have to call Poison Control twice (both times on Kaedyn), Cal gets a broken arm, Noah gets a broken nose (falling down stairs), Nathan gets a broken nose (courtesy of Kaedyn) ... ::sigh::

Anyway .... so it's clear that he has issues still with his palate.  It is moving minimally, however it does NOT close all the way (which means it's not long enough) and he DOES NEED SURGERY to correct this.  However, Dr. P does not want to do surgery at this point in time, even though he needs it. He wants to revisit it in a year. Why? Because he's scared it will kill him - not kidding, those are the words that came out of his mouth.

He says Nathan's airway is so small he's concerned it'll cause more damage. He's also concerned that the HGH will make his lingual tonsils larger and decreasing his airway more. He is hoping that the G-tube feedings and the HGH will help his growth and he'll be able to have the surgery in a year, so he wants to re visit the thought of surgery in a year (next April so a little less than a year) ... otherwise we may have to discuss options for his airway.  What the heck does that mean?  And I didn't ask....

Also his left tube is still blocked but we're not going to worry about it right now unless it gets infected and smelly again .... so yeah. Scary biznitz ...

We went ahead and started his feeds tonight.  I managed to get his pole set up by where he had his bed set up (not an easy thing) ...  started him out on one box of feed (geez, is he a chicken?) and at only 20ml per hour.

His ..... thought process ..... on this....   "I'm not hungry" ....

But he did good :)  

Thanks for NOTHING Seattle....

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Today is Crainalfacial Clinic in Seattle ....... so off we go ....... with our cheeseburger!

We are driving along and Nathan announces "I gotta go potty!" So for the first time we had to pull over for a potty break for Nathan! Then he charms the gas station attendant out of a free "Frazil" which is like an Icee. .. this kid.

Over the bridge, by now - Nathan knows we're probably headed to the DR .....

Hello Seattle.....

Before his appointments today .....

We colored while all the different sets of DRs and people came in ....

Update on Today's Appointments: This is long....

First off.... Nathan's left tube is still blocked. First line of defense, we are doing drops for 2 weeks and if that doesn't clear his tube, he'll have to have another surgery to replace that tube. His ear drum is retracted. Not happy with this news.

Then came the speech pathologist. Air is still escaping his nose when he talks (she says - may not be exclusive to - but includes the F sound... http://www.nchn.org.au/cleft/speech_patterns/nasal_airflow_disorders.htm ) ... he also has Apraxia of Speech (http://www.asha.org/public/speech/disorders/childhoodapraxia/ ) and as if that weren't enough .... he also has: VPI - Velo-Pharyngeal Insufficiency -(http://www.lsuhscshreveport.edu/OtolaryngologyHeadandNeckSurgery/SpeechproblemduetoVPI.aspx ) ....
So what does this all mean? It means that they want to run some tests... a scope to look how his muscles move when he talks, it looks like his palate is not moving at all or very little when he talks, and also talking about getting a "moving x-ray" where they take a video x-ray while he talks. Never heard of it but that's what they said. This will most likely result in a surgery to expand his palate or do something to his palate to at least help him make contact with it and air not escape so much. We were actually told he may need that when he had his cleft palate repaired.

And then Nutrition came in.... and this is where I just want to cry. As if all of that wasn't ENOUGH .... Nathan is growing but he is still "Failure to Thrive" and they do worry about him getting proper nutrition. It's not that we are doing anything wrong and we've worked REALLY REALLY hard to avoid this. He'll still be able to orally eat, but it'll give us a chance to supplement his nutrition at night while he's sleeping. To make sure he's getting more calories - because he still burns off calories as fast as he eats them. I can agree with this move, I see how it'll be helpful, but I have to admit I feel a little bit defeated. At least now that he isn't a hit or miss eater, and he eats all day long and enjoys food - I'm more comfortable with the fact that at least I feel - or hope - he won't fall back into the lazy eating and just take what he gets in the tube. It still makes me sad because we fought so hard to avoid this... and maybe I have done him a great dis-service because i fought so hard against this. A lot of the RSS kids have G-Tubes ....

Sigh ..... so ..... that's 3 surgeries ..... three. May not end up with all of them, but two of them are pretty high possibilities ... ENT thinks the drops may work. Probably a 50/50 shot. Seriously, I'm just gonna go cry now...

Thanks for nothing Seattle......... you gave us nothing but bad news :(

The mountain on the way home makes it a little better

Traffic and Nathan don't mix well :(   Once we get to the big bridge, he starts to relax a little bit more....

"What's that?"
"Big Bridge"
"What's it mean?'
"Going home!"

And then when we get to the Dead Fleet .....

Me "what are those?"
Nate "big boats"
Me "what's that mean?"
Nate "almost home!"

Growth ... and Surgery ....

.So Nathan had a couple of follow ups this week.

The first was with Endocrine - about his growth .... about his thyroid.

Doing the growth hormone shots every night isn't easy for any of us.  I won't do it.  I just ... can't.  Not with the open needle.  I can barely give myself shots.  I let Nathan help me sometimes do my injections, to try to make it easier for him.  But I ... just.... can't .... subject that on him.   But something clicked with Nathan recently and he realized that he needs these, so hopefully - HOPEFULLY - we'll be able to be more consistent and it'll be easier on all of us.   So his growth wasn't all that good.   We're waiting for his lab results to find out if we have anymore room to increase his dose of HGH.  His weight gain is not good either, but .......... we have exciting news!!!

HE HIT THE 30lb MARK!!!!!!!!!!!!!  THAT'S HUGE!!!  Major milestone when a child doesn't have an ounce to lose.   He is about 7 weeks from his 7th birthday...

HUGE!!!

He was 30.3 lbs and 3' 4" tall (103 cm) ...  still the weight of a 2 year old and the size of 3 year old ...  :/

His thyroid is doing good, his medication amount is the same - no changes there :)

When Mom says stop spinning on your head .... one attaches one self to a stool and spins wildly ...

The clinic in Tacoma has a row boat in the waiting area ... most of the boat is inside, but the nose of the boat is on the other side of the window...  it's pretty cool.  The ores and everything are stuck in place.... so Nathan just flips and stuff, true Autistic he is....  always spinning and flipping ....

I love this thing and wish we could build one at home.  It's a light thing, designed for sensory purposes... they have it set up right by the chair in the lab - and it truly helps.  It's this fixture on the wall that you can touch, it has a bunch of different colored "marbles" (glass balls) ... and they will spin when you touch them.  So you can roll your hands over them and they'll move under your hands....

I don't normally take pictures of the kids during blood draws, but for once Nathan wasn't in my lap .... so I figured I'd take a series of pictures.  Poor kid :(

That appointment was on the 25th ....  (Tuesday) ...

Today, (the 27th)  ...  he had another follow-up.  

This time with urology to discuss how he is still peeing out of ........... three.... holes.

A couple weeks ago Kaedyn (Nathan's younger brother for those who don't know the kids yet) ... came running at me - he yells "MOMMY!!!" and I said what? .... he says "NATHAN IS PEEING OUT OF TWO HOLES" .... lol.... poor kid was traumatized ....

Dr. G (Urologist) was hoping when he saw him a few months ago that he would continue to heal up.  Instead Nathan has to now have a 4th surgery on his little male bits because he got a couple of fistulas after his last corrective surgery which DID WORK - his testicle is still down (YAY!) and his urethra is at the tip of his penis now (DOUBLE YAY!) but he is going to have to go in and get these other two holes under his penis which have become permanent (if not fixed) holes that urine is coming out of.   So he wants to get it done as soon as possible.... so the date was set today........ March 12th.  Less than two weeks ....  ::: sigh :::

He's almost 7 and he's still in diapers.  This isn't an unheard of thing for kids with autism, or other medical issues, but we feel Nathan can totally be potty trained.   It's just convincing him of it!  LOL...

Since we were in Seattle ... we thought we'd try to pop into the ENT department because Nathan has recently started to have a lot of discharge out of his right ear that smells bad :(   With his tubes, we felt it best to get it checked out.  Discharge for him isn't abnormal but this was excessive.  AND SMELLED BAD.

So we got him in (took awhile) and they pretty much got him right back between patients with the On-Call ENT ...  and she took one look at his ear and was like "I'm going to suction that out and take a culture" ... so she did.  She told us (which we didn't know) that any discharge is an ear infection and it means the tube is doing what it is supposed to.

So that's good.  I would have taken him in here to his reg PED but she left the clinic and he's on the cusp of switching to a new DR as of Saturday - and we were never able to find another PED through his old insurance and the doctor who he was assigned to after his PED left wasn't comfortable dealing with him (or Noah for that matter.)

In the car on the way to Seattle ....

We had to stop for lunch ... things were crazy this morning....  

Spinning again ... ha ha ....

MR. Daring ... (Dad was behind him) ... he decided to climb on the spinning stool to get a drink of water... and that goofy face, that's a normal face for him...  

5 drops in his ear twice a day....... even the pharmacist (whom we love) said that's a lot...

So we're doing drops ... getting rid of his stanky ear ... and going to be packing up or surgery ... again ... in a little over a week for another overnight stay of at least a night (but he usually stays at least two) .... :/   But luckily with his last surgery - they figured out a cocktail for his anesthesia that doesn't make him throw up ... yay!  So hopefully - doing that - will continue to work for him.  

Home Again Home Again, Jiggity Jig - September Surgery - Tonsillectomy & Ear Tubes (again) ... Day 3

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Had a hard time waking him up this morning. He is a very tired bug. But, 10am and he's finally awake-ish. Asked him if he wanted to go home, he said no. Reminded him that Cal, and Noah, and Bubba all missed him and really want him to come home.... then I asked if he wanted to go home, again - and he said yes. So YAY for that. He just has to eat and drink this morning and then we can go. We might be here until after lunch though. But I think we're going home today. His little bit of a fever broke and when the docs came in this morning they said how they were a bit worried about him yesterday but they are more confident this morning hes doing okay and can go home. YAY!

GOING HOME!!!  YAY!!!!!!!!!   It's OFFICIAL .........

Went to get gas ....... this was my reaction!  HA ...  we were trying to delay getting on the road during lunch rush hour...  and so we stopped at McDonalds to get something for lunch too....

When we finally hit the road, Nathan was like this for a little bit .. and then.......

 He was like this.  

Auntie Cara and the kids got him this monkey :)   He got it when we got home....

Lots of soft cold foods for the next few days.....

September Surgery - Tonsillectomy & Ear Tubes (again) ... Day 2

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I didn't sleep well .......  to the point where I was up at sunrise.......

This is what Nathan's left ear looked like.  This is the one they had to anchor in place with cartilage ...

He was ABSOLUTELY miserable this morning.

He completely missed out on breakfast, and slept until almost noon!

And of course the only thing he wants to do is be on the tablet.   You can see a bit of blood on his pillow from his ear bleeding last night.

He got a gift from Grandma Phyllis ....

An Elmo (Giggling) Ball...   we threw it around a bit - he'd throw it at us, we'd throw it back...

To hear Elmo in action...... check out this video!

Nathan definitely started to perk up by 2pm ...   He has a chocolate pudding face and a banana phone!

I made him get up and walk some (notice the gift shop slippers!  Cuz I forgot all slippers, shoes and even SOCKS at home) ...

We went to hang out in the playroom a bit ... which we didn't even discover was THERE until the day we LEFT after his cleft palate surgery.   He didn't feel like going when he got his surgery in August (ya know, catheter and all that he didn't want to move) ... so we made sure to check it out finally - with him - instead of just going down to get stuff for him to play with.

This is the play area .......

 The first picture you see is the room you walk into - the room is L shaped ...  the cupboards there have a bunch of craft stuff - they hold "classes" or designated craft times twice a day in there.  There are some things that you can take back to the room but a couple of the cupboards are in room use only type stuff.   The second pic is me standing at the back of the other half of the room looking towards the area of the first picture, you can see the lady in the blue shirt and the kid in the red shirt in both pictures.  There is a dad there playing pool.  What you can't see is to my right of the second picture are tons of shelves with movies and music and books...  and behind me is a "Teen Room" for the older kids with game systems and stuff.   Then the other four photos are parts of the outside play area.  They have a basketball court and supply balls and trikes and bikes, and scooters.

By the doors to go outside there is this really sweet fountain ....  (you can see the balls in the background)

There is even a resident cat, and I forget his name but there is a sign on the door.  I thought I took a picture of it but I guess I didn't...

Back to Nathan......... He had this face a lot....

He wasn't sure what to do .. but then he found the U shaped one and it was a chair!  LOL....  After awhile we asked him if he wanted to go see what was outside.....

He had fun ......

He had to stop for gas.....

BIG Chess ...... we didn't play, we pretended ....

But then things started to take a turn, and he got tired and crabby - so we took a walk with him to get our dinner and then back to his room...

He wasn't doing so well.  He wasn't drinking and he was having a hard time eating ...  things were catching up with him.  And when asked, he said he didn't want to go home :(