Faaaaa la la la la la la Laaaa!

FaaaalalalalaLalalalaaaa! It's almost Christmas time, and do I dare say it?.... I feel like we might actually make it home for Xmas :) Kayden has progressed to a crib, rather than a bed...

He's getting his central IV line taken out and having just a regular IV instead. The central line is in a deeper vein, and is located in his groin, secured by 4 stitches. It's is his last concerning potential threat of infection... Goooood riddance! His lung is fully expanded again, and the greatest news of all......he's nursing again :) 

We had a hectic, but good day. I got to spend time with Maxon today, which was really really nice - except for the guilty part of leaving Kayden. We had a snuggle session after Grammy A. dropped him off, visited with Kyden for as long as Max's attention span lasted, had ourselves some cafeteria breakfast (not so delish), then went to check on Agent pants...

He wasted a good portion of my new wrapping paper! Thanks a heap buddy.

Along our travels to our house we mailed out our Xmas cards, visited Daddy-O at the shop, and paid some bills. After we discovered Agents pants' little mess, we had popcorn and watched Wibbly Pig together before Max headed to Grammy P.'s for some gingerbread train making. 

All in all, I felt like today was equally divided with both my boys - who if you couldn't tell already, I love dearly. My family is my entire world, and I cherish them with everything I have. I have to admit, I'm starting to allow myself to get a little excited that we could all be waking up Christmas morning together. One of us holding Kayden, one of us video taping Maxon, all 4 of us enjoying Christmas as its meant to be - at home with your loved ones <3 

Enjoy your families, treat each other with respect, and love each other unconditionally. You never know what tomorrow will bring, so don't leave any room for regrets :) 

Day # 21 

(stil in the PICU)

With all our love & sweetest dreams, 

Melissa & Kayden

My sweet little fuss face :)

I wanna got to bed!....and I will as soon as I update this. It's 1:00am, I just fed Kayden (bottle fed), and he took it successfully. He has been screaming his little head off all day. He hasn't been allowed to eat since 2am Sunday morning, and the child was starving! I finally convinced our favorite doctor here to let him have a go at it :)

Yesterday morning's x-ray showed that his lower right lung was a bit collapsed, but through chest PT today we are hoping that we fixed that problem. We won't know until today's x-ray.

Some things to look forward to are: today's events with Agent Pants :), consistent feedings & weight gain..and no more collapsed lung! 

I'm going to keep this post pretty short, since there isn't too much more to add. Fussy baby = tired momma!
Goooooooooooooooooooood Night <3

XOXOXO
Melissa & fussy face Kayden 

Benefit Raffle Preview

Hi folks!

Stacey here again.  While I don't have any tear-inducing pictures (happy tears, of course!), I do have an update on the Palumbo Family Benefit.

We have been BEYOND blessed by the response from both friends and strangers to help Kayden and his family.  Here's a preview...

I also wanted to let everyone know that tickets are in and can be purchased by contacting me or my mom (aka Grammy A) at the info above.  

We also wanted everyone to know that if you cannot make it to the benefit but still would like to participate in the raffle, you can!  Just contact one of us and we will make sure to put raffle tickets with your name on it in for the prize or prizes of your choice!

Thanks again for everyone's continued support and prayers!

(Ok managed to steal a pic of Kayden holding his Daddy's hand... this one is more heart-warming, I think... cue the "awwwws"!)

Amazing doesn't even capture it...

Today was amazing. Amazing doesn't even capture it. 

It started off a little rocky. Kaydens breathing tube slid out a bit over night and so they had to retape it at 9:00am (4 hours pre OR).  Retaping is such a delicate procedure it requires a paralyzingly drug for Kayden OPPOSITE of what we needed to extubate. For extubation he actually needed to be awake and even a bit rowdy :) THEN at rounds, which happened later than usual (11:00am), the new attending decided she didn't feel comfortable with his vent settings - even though the attending doctor the night before said that Kayden was ready, and was scheduled in the OR for 1:00 - hence my exciting blog last night! He was switched onto the appropriate medication for extubation, and had his feeding tube out in preparation as well. I was floored, if this was what needed to happen, *WhY* would you wait until 2 hrs before his OR time to share this!? I took a few good deep breathes and then called the doctor out on this very poor communication problem. Sooooo, we decided he needed a trial test from the ventilator, which he passed with flying colors! 

After our morning/early afternoon of ups and downs - they were ready to give him a real chance. 3:30 came, and away he went. Longest hour in my life, but totally worth all the anticipation... at 4:30, this is how he was brought back to us :) 

He looked right at Ben and me and gave this tiny little baby wail. My heart leapt into my throat, as it struck me that I hadn't heard my baby cry in almost 3 weeks! It was the most beautiful sound I've ever heard - I still can't get over that moment <3..... Like I said, today was amazing*

Only a short while later, amazing moment #2...I got to snuggle that little turtle butt right up. The last time I held Kayden was on the way to the ER on Thanksgiving morning...and tonight was SO much better than that morning. I've been anxiously awaiting this day for weeks, nervous that I would be too scared to touch him, or he wouldn't remember being held and might prefer laying down instead now... I was sooooo wrong :) Thank GOD I was wrong. 

I mean that too.. thank God. He was right by us today, cheering right alongside Kayden. Thank you all for those additional prayers and good thoughts today. I will forever be grateful for all the love people have been sending our way, and all the people invested in my son's journey. My family is so lucky to have each one of you in our corner!

Ok, I've spent too much time without Kayden in my arms now.... 

Time for another cuddle session <3

Sweet dreams friends :) 

With much love, 

Melissa & Kayden

Ready!?..... GO!

Tomorrow is the big day! All settings are at the minimum, and Kayden has been doing great with them all day today. Tonight they will cut his current sedation medication in half and replace it with another one that will stop immediately when they stop it. He also has gotten some steroids for his lungs just in preparation. They took some more blood work to double check things and his red blood cells are low so he will get a small transfusion tonight (1 of 3 total since we have been here).  It sounds scary but he does great with it and it helps him quite a lot and actually will give him an extra little boost for tomorrow.  I can tell Kayden is ready for tomorrow, 'cause he was smiling at Ben and me this morning :) *heart swelling* I feel like I'm starting to get my baby back! 1:00, 12/10/12 we are ready to take you on! 

Elf alert for the day: Agent Pants was found this morning eating Max's yogurt! Naughty little thing, I wonder where he gets these ideas! :)

I've ordered a BBQ chicken melt & a vanilla milkshake from Friendly's for dinner tonight... I'm going to sit back, watch TLC and enjoy my little buddy. Tommorrow I may not be eating at all since my arms will be full and busy holding my baby :) CaNNoT WAIT!!

*Last little side note - as I was wrapping up my blog tonight, Kayden's Grammy P. informed me that 60 minutes has a special about turtles on tonight:) Pefection <3

Love, love, love...

Melissa & Kayden

Christmas spirit, faith & courage!

Gooooood evening friends! Kayden is doing so great today, and really proving to the doctors that he is ready for Monday. We don't talk about Monday in front of Kayd though, so he doesn't get any funny ideas :) We don't want to jinx anything! He has done phenomenal with all of his lowered vent settings and is just about at his goal settings. He is tolerating all of his sedation medicine, and is producing proper urine output and good stools (I know, I know, TMI but it's all part of what they look for). He hasn't had an "episode" in 3 days,  and he also is starting to look a bit more chubby! 

I'm finally feeling a bit in the Christmas spirit. Our Christmas cards are in.. And I put out some balsam & cedar candles, and my house smells like that warm Christmas feeling. I might have some warm egg nog in the morning instead of coffee. Ok, ok let's be serious... I can't make it without coffee, but maybe I'll have both :) 

So, I'd like to take a second to really, truly and thoroughly thank all of you reading this and rallying around us. We have amazing friends and family, and are so blessed to have you. For those who we don't really know, but are following Kayden's progress and/or my crazy blog - thank you for sending those thoughts and prayers our way. It's been a bit hectic lately, and if you've texted or emailed me without response, please know it's not intentional - and most likely I forgot to reply :/ My brain isn't fully functional lately, but please know I've read and loved each note sent my way <3

Busy days ahead, but we are headed into them with faith & courage.... 

With all our love

Melissa & Kayden

Torn

Day 15 on our road here.. And things are looking up. Kayden has been stable for 3 days now, and continues to be as they start to lower his vent settings again. Tonight his oxygen went from 40% to 30% and his PEEP went from 7 to 6. He got weighed today and is now 6.82 ounces - GO buddy! Not much else to report, which is good news :) We are still on the path for Monday being extubation day. Fingers, toes, arms, & legs crossed :)

Fridays, we've decided will be our "normal" night. We all stay at home. It makes me super duper anxious, but it gives us all a little refresh for the week ahead. It never feels right anywhere I sleep though, because either scenario I'm missing family members :/ I AM starting to feel like we might all come home soon(ish) though <3 So, for tonight I will snuggle up to my 2 oldest boys while I miss my tiniest. Don't judge me when I call the PIcU several times tonight for a check up :) 

With a worried heart tonight, but so much faith..
Ben, Melissa & Max