Wednesday, December 14, 2011

Superman!

Elliot is continuing to impress us more and more everyday.  On Sunday he woke up VERY swollen and his left eye could barely open, luckily he wasn't too bothered by this.  Since Sunday though, he looks better everyday and today I can't even see any swelling in his face at least. 

He is doing overall pretty good, we still have him on back to back doses of tylenol and ibuprofen (but seriously if I had to have this surgery instead of Elliot, I know I would need the GOOD drugs and he seems well managed on just the over the counter stuff).  He is still very very clingy, only wanting mommy and daddy and fussy a good part of the day and he spends a lot of time not knowing what he wants, up, down, crawling, sitting, so needless to say Byron and I are worn out and looking forward to my family arriving next week for the Holidays. 

We did have an outing yesterday to the Orthotic place and Elliot was fitted for his helmet, which should arrive right before Christmas.  When I have time I will scan the pre and post surgery scans because there is such a noticeable difference its insane.  I am so so so pleased with everything, and if I would have known it would have gone this smoothly I maybe could have slept the last 2 months!

We are enjoying our endless pajama's days and we are so thankful Elliot is doing the unexpected once again.

Very swollen forehead and eye, but still loves to eat

Daddy distracting him with the tree

Quasimodo from the Hunchback of Notre Dame

Weird, Elliot is being held

Monday, looking much much better

Forehead swelling made Elliot look kinda evil

Tuesday morning, looking good

his forehead looks so different

getting fitted for his new helmet

Happy with Daddy

close up of that new front view

1 week post surgery side view

1 week later and no more swelling






Saturday, December 10, 2011

Another one bites the dust

Let's see, where to begin...first off, we are HOME!  Elliot was discharged this morning and after we filled his narcotic at the pharmacy at Children's we headed home.  Every since being home he just seems to be acting more and more like himself.  He needed his home, and Byron and I feel the same way.

We have had a mix of emotions the last couple of days, but in the end, we feel very blessed to be where we are right now with our little man.  Waiting for him during the surgery on Wednesday was not easy, luckily we had some visitors to help us pass the time.  Another HydroMOM friend stopped by as well as our friend Heidi who is also Elliot's babysitter/nanny/caretaker...never sure the right word and her little guy Jude.  While we were waiting we also headed down to the cafeteria to get some lunch and when we were eating we recognized probably about 15 people there...we both looked at each other, like, wow this is kinda nice that we actually know people, but then it dawned on us, hahah, that this is not really normal.  But we realize this is our life at this point and even though its a little odd, at least when we are there we feel like we are oddly surrounded by many familiar faces. Around 4:30 that day Byron and I were feeling a little queasy that it had been an hour and a half since our last update, so Byron went to the surgery receptionist and asked if she could have the nurses call for an update...little did we know the next update would be the surgeons and the anesthesiologist walking out to tell us the good news.  Elliot truly has the best team at Children's, we even got the same anesthesiologist he had in July who we just loved.  Byron and I jumped up immediately to hug them all (eventhough Byron already told Dr. O'Neill that he loved him but not in that way earlier that day).  They let us know that Elliot did fantastic and they didn't have any hiccups at all, which is exactly what we wanted to hear.  He did have to have a blood transfusion of around 250 something (I'd be lying if I said "ml's", cause I really have no idea...but its not alot).  We then headed back to see him where he was in and out of it.  We just sat with him and held his hand and were ooing and ahhing at how different his head already looked to us. 

Then we headed up to the Pediatric ICU for the night...my sister Blair was there, and my brother was able to make it as well and pop in to see how well Elliot was doing.  That first night was an interesting night to say the least.  When we first got there, Elliot was on all sorts of pain meds and was finally opening his eyes and actually smiling at everyone and just laying nice and still...so I figured, sweet, this won't be bad...WRONG.  We had forgotten that the anesthesiologist mentioned that he blocked Elliot's nerves in his head from feeling pain and they would wear off eventually that night.  And, yes, yes they did wear off.  Around 2am, he was PISSED and inconsolably crying and pulling at all his IV's and his blood grenade in his head.  We couldn't hold him yet so it made it particularly hard to comfort him...and his nurse moved at a snails pace getting that Morphine!  Yes, you might be wondering right about now about his blood grenade...oh it was a lovely added bonus to the surgery.  He had a 2 foot tube coming out of his head behind his ear connected to a grenade looking object that once an hour had to be squeezed and it acted like a vacuum that sucked fluid including blood from his head.  It was like a medical "rat tail".  It was hard to keep little boys hands off of it.  He also had a catheter, an IV in each foot and an arterial line (IV) in his right hand which is a line that is run in his artery to measure his blood pressure.  With all these it was just to hard to have Byron or I hold him.  We did make it through the night with lots of oxycodeine, morphine, ibuprofen and tylenol (unfortunately only Elliot was offered these, ha). 

The next morning, he headed to radiology for a CT Scan to make sure everything was looking good and then throughout that day, he rid his arterial line and his catheter.  He was also drinking fluids on his own and tempting some baby food.  We were finally able to hold him, and eventually we got the hang of holding onto his blood grenade while holding him.  Chris and Ann came that day as well and helped us move out of ICU into a private room on the neurosurgery floor.  That room was WAY better, we had our own bathroom with a shower and everything, I was thrilled.  That was one of the best showers, eventhough I had to duck under the faucet (it was made for kids) and it was cold water, but I didn't care.  Elliot was doing pretty good, still needed Oxy and Morphine for the pain but he was starting to be more and more like the Elliot we know.  That night was hard again, Byron and I were really in need of sleep, but the nurses kept coming in (which I know is there job) checking Elliot's vitals and drawing blood through the night but it would wake him up and then it would take us forever to get him back to sleep.  We may have not been very nice people that night...

The next day, the doctors did rounds and let us know that Elliot could go home, we were floored and a little hesitant.  They pulled his blood grenade and told us that as long as it stopped oozing we could go home...well it didn't stop oozing, so we stayed another night, but it was a good thing in the long run.  Dr. Elliott his pediatrician from Ft. Collins called the night before to let us know that he was going to come down for a visit and to give Elliot a hug from him.  When he stopped by for a visit, Elliot even cracked a smile.  Dr. Berman also stopped by, who was the first doctor we had contact with when we found out what was going on with Elliot.  Its so sweet of them to come and check in on Elliot, everyone seems to be pretty amazed by him...sometimes I feel like this is normal and then I am reminded that no, Elliot is one of a kind and a pretty amazing little dude.  This day we also had nurse April, who was a friend of a friend in Fort Collins, which was nice to have another sweet person taking care of Elliot.  During the day though little boy wasn't eating and drinking like he was the day before and I was a little worried he wasn't getting enough fluid.  That night though he finally ate some mashed potatoes, A LOT of mashed potatoes, but I was just happy he was finally eating something.  Then I tried giving him a bottle, he took one sip and gagged and then 5 seconds later projectile vomited mashed potatoes all over me (Don't worry we didn't have time to take pictures of this). Thankfully our friend Deborah was visiting so we had another set of hands on deck to clean him up.  Poor little guy just had a bad tummy from all those pain meds and antibiotics, nothing was meshing well with his system.  He luckily perked right up and ended up having a great night and sleeping almost through the night.  He even slept through his pain meds running out.

That brings us to today and they did rounds this morning, checked the status on his oozing, wrote him a prescription and sent us on our way.  He is just better off being home.  Less germs in our house, he has room to play, has his own bottles and food he is used to, his crib and his dog.  He is a much happier camper.  We still spent a lot of time in the glider once we got home but him and I can snuggle as long as he needs it.  Now Byron and I are just keeping up the medicine and checking his temperature (we are still monitoring him for infection).  He has a follow up this week and an appointment for his helmet.  We think his head looks SO different.  The sides of his forehead are more filled out and the back of his head is much rounder and doesn't have as large of a slope as it did before.  I'm posting pictures, but some are kinda hard to look at, or maybe its just me, but you've been warned. 

We want to thank everyone for your good thoughts, prayers, care packages, food and love!  We are ready to now to just love on our little guy and help him recover at home.

In baby jail before the surgery

Little does he know what is about to happen

This is how Elliot kisses me

Poor boy in post-op

sweet thing with his blood grenade

so very sleepy

Ace Ventura

Spending time with Auntie Blair, but not knowing it

Me love cookies

Finally found his thumb

Oxycodeine smile

I love Morphine

Sitting up the next morning

More Morphine please

Dad, Shut Up, I have a headache

I want to smile but my lips don't work

So happy

"Wait, you have hands too"

Come here blood grenade

Favorite pic of our little guy

Jack Daniels, cigarettes and women

stir crazy

Byron hiding his beer from the nurses

Back home playing

Hey look mom, its my duck

Side angle

Hamming it up

Mom please, I'm on the phone

Wednesday, December 7, 2011

WooHoo

ELLIOT IS OUT OF SURGERY AND DID WONDERFUL!!! Only 5 hours, which is incredible, that really lowers his risk of infection.  He is already breathing on his own and everything.  We get to see him in the next 1/2 hour.  We will be in the ICU tonight and then in our own room tomorrow.  Thanks everyone for your prayers, good thoughts, good vibes and everything else wonderful.

Dos

Guess what???  Elliot is still in surgery.  The latest update was that they were working away on him and that he was doing great. 

update numero uno

Elliot has been back since 11:30 and we just got our first update that he is finally all prepped and they were getting ready to make the first incision. We are oddly calm and trying to hold onto that feeling. I think the part couple weeks have been harder with all the anticipation leading up to today that we are relieved to finally be getting iv over with. Ill update again when I know more. Thanks for all the texts and emails!

Monday, December 5, 2011

Green light means go

"Wait, I can ask for anything I want?"

Merry Christmas
I know its been awhile, but this will just be another quickie.  Our life has been busy to say the least.  Lately we have just been preparing for Elliot's upcoming surgery.  He just had his pre-surgery appointment this afternoon and he is healthy and ready for surgery.  At this point, I just need Wednesday to come and go and then maybe we can sleep again at this house.  So come Wednesday, little boy will have a new head! haha.

This month, we celebrated Byron's birthday and he got his first "Happy Birthday Daddy" card and we shared a sappy moment and then moved on and had a good day with friends and family.  We then traveled to Pennsylvania for Thanksgiving.  Considering our last trip was abruptly cut short, we were looking forward to seeing everyone who we missed the first time around.  Elliot had many visitors (no one cares about Byron and I anymore, and we are OK with this, haha) and he got a ton of Grandma time and Aunt Annisse time.  He was in seventh heaven having people rock him to sleep and smother him with love...boy was going back home to Colorado a reality check for him...hahha just kidding. 

The last week has been rough, between Elliot finally kicking a cold, cutting another tooth, Byron having an ear infection and myself just so stressed out between Elliot's surgery, getting ready for my leave from work and trying to get in the Christmas spirit at our house, we need another vacation!

I promise that during our hospital venture I will obsessively update this blog because it will be the easiest way to update everyone and to pass the time. 

Elliot milestones:
-crawling (army crawling)
-another tooth
-says Mama, OK and Obama (I swear, its hysterical) and a whole lot of other babbling

The pacifier is now a toy...he is still all thumb

Elliot and his girlfriend Deborah

Daddy is teaching him early how to hold a screwdriver

We love jammy mornings

More teeth!

Getting ready to eat Thanksgiving dinner

Elliot and his Great Grandma Carns

Yep that's right, Elliot loves Pink Ponies!


Elliot and his Aunt Annisse enjoying each other

Getting love from Great Aunt Nancy and Uncle Joe

Army crawling through the kitchen

Hanging out without pants

Filson love

typical evening of Elliot and Filson rolling on the ground

So Big!

Peek-a-boo

Such a Ham

All smiles

Love you mommy

Obsessed with the ornaments on the tree

Cousin Corinne giving Elliot a bottle

Floor time with Grandma

Elliot and his rubber ducky

Little Lumberjack

Grandpa!

Checking Great Grandma out

Aunt Annisse and Corinne feeding Elliot

Grandma snuggles

Elliot and his other new girlfriend Kris

Cousin love

Great Aunt Janet and Uncle Dave

Old Friends and Babies

Love him

Relaxing

All smiles for Grandma

Loves those ducks