Monday, December 13, 2010

Day +173- Part two

 Several of you commented that Daylon looked like Clark Kent with his new glasses. Well, it's time you knew...

Hello Everyone!
Thank you all for your prayers, kind thoughts and comments. They've really helped Brian and I through today. Daylon has been in his room for only 20 minutes or so. I'm thrilled to report that the surgery went well. It was a long day and nothing happened on time or as quickly as I hoped but it's done!

not feeling too hot before surgery...but still willing to crack a smile!

 All three EB trained Anesthesiologist showed up for surgery and worked together to intubate Daylon. Literally. It was a sight to see. All three doctors crowded tightly around Daylon's head, glued to the camera. One had her hand on his throat to feel it go in, while the other two worked the camera. They put up no front and made it clear that they were nervous about the procedure. It's an unpleasant thing to watch your baby be intubated (especially with the gun camera in his mouth), but I can't even say how appreciative I was to watch these professionals provide the best possible care for Daylon by working together. Once he was all set up and the drill was out and ready to go, I headed for the door. An hour and a half later they called me back into the OR to help bandage the incisions. They drilled 3 nickle size holes in his head. Dr. Tolar said that has soon as the first hole was in and the drill removed, a gush of fluid came out. I'm glad I was in the lobby for that. I checked out the wound and got the low down of what happened during surgery and then Dr. Tolar took the reins. He set up biopsies and photography to take place while he was still unconscious. He told me that Daylon's skin is performing above average at this point post transplant. That was nice to hear.  I needed to hear something good. Extubation went well, but the whole process left Daylon really hoarse. He's gotta a husky voice to begin with, so this wasn't a shocker for me. Dr. Tolar said that the mystery sores in his mouth are not EB related. He's going to have them cultured because he believes they're the product of some sort of infection. One more thing to add to the pot. :) Until the drain comes out he can't be up higher than 3o degrees or be held. That will be a toughie for him. He LOVES to be held lately. As of right now, he's in a lot of pain obviously (three holes in the head and eight in the thigh might cause a bit of pain! :) ), but as always, he's a champ. He's the toughest little guy I know. I'm so grateful he's okay.

 Daylon is in the PICU for now and will stay here for 3 days or so (fingers crossed) and then he'll be moved back to 5D. All the doctors have said that things have gone so well today that we are still on tract for going back to CA on December 20th! I'm so excited. I PRAY that it all works out!! BMT is an emotional roller coaster like I've never been on before. When we got to Minnesota, my naive little mind thought that transplant would be really rough the first month, tough the first 100 days and challenging up to the first year. HA! :) While he was in 5C last time, I just kept thinking, "It's one hundred days. We can make that". After that Day +100, everyday has been a little bit of a drain. I know I shouldn't have, but I've put all my eggs in the 'going home for Christmas' basket. I'm emotionally tapped out. I have no clue how the BMT families from the past have done this. Living the BMT life for years? Wow. I have so much respect for them. I'm hoping that living life in the BMT fast lane (or slow lane, depending how you look at it) will get easier once we're back in Southern California with our extended family and the life we're used to. I'm so looking forward for the disaster of the day to be Keira's teacher calling at 10 am to ask me to bring 4 dozen cupcakes up to the school by noon. I used to hate those kind of days and now I love 'em. Go figure.
Enough rambling about me. We have one last bit of news to share....

This weekend Minnesota received the 5th largest blizzard in the state's history. Our city had a "Snow Emergency". Everything from restaurants, to stores  to snow plows were out of commission. Currently, 2/3 of Minnesota's average seasonal snowfall has been met. We had a negative 15 day on Sunday to boot. From what we've been told, this kind of cold is typically of late January-early February. Lucky us.

Our living room window...on the SECOND FLOOR!

 Seriously though, this was a really amazing storm. I hate driving in the snow to the point that I think my driving days here are over, but it was so crazy to see the snow fall sideways! I walked home from the hospital in it and it occurred to me for about the, uh, I dunno, fiftieth time that I could have never been a pioneer. My skin burned like it was on fire and I couldn't even see where I was or where I was going. R-I-D-I-C-U-L-O-U-S. 
 Warning: these pictures are really blurry and well, not the best. I hate the flash and it was freeeeeeeezing!

Outside the parking lot doors

There are the cars in the parking lot. Kind of. :)

It was fun to walk under this. I wasn't scared a bit. :p

Our landlord needs a place to stay apparently


The park across the street

This would be Keira, hip deep in snow

blizzard ends and it's time to trade off at the hospital.
  The kids thought the snow was great until they, one-by-one got stuck in the mounds of snow as big as they are. It's the kind of memories they won't soon forget. I love making memory wrinkles in their brains!
   Well, I'm ending here. I wanna post this before it gets any later. Thank you all again. You're amazing. We love you!

  Sweet dreams.


Jess Edling said...

HOLY SNOWSTORM BATMAN! I have never experience snow like that before. I bet the kids are having a blast.

SO glad surgery went well & that you guys are still on track to come home in a few days. Love you and miss you ferociously.

Angelique Ringgold said...

First to comment...whoo hoo! Soooo glad all went well. I've been thinking about you guys and praying all day. Tell everyone on 5C we said 'hi' Daylon will be well taken care of over there. Lovin' the snow stories too :)

The McLaughlins said...

YAY!! Go Daylon!! You are SUPERMAN!!

Jen and Brian,
I am so glad to hear the good news that the surgery went well and he is recooperating so quickly. Lots of prayers still being said for Daylon and your family. Stay strong.

Lots of love,
Amber McLaughlin,CA

Anonymous said...

Once again our prayers have been answered! Daylon is such a little fighter. I'll be sooooo happy when you finally get back home to good ol' California... where we are just ending our last days of 80 degree temperatures :) I miss all of you more than you can imagine and we're counting the days!!! Keep up the GREAT JOB you're doing. I'm so proud of you! Give everyone a big kiss for me.


Annalien said...

So glad the surgery went well! I pray that Daylon will feel much better now that there is less fluid on his brain. Hope you are home by Christmas. God bless you and give you the strength you need.

Anonymous said...

Once again another inspirng update. Way to go Superman!!!! God bless you all and prayers were going to you all today from Fontana, Ca.
Bernie in Fontana. xo

Mom to Many said...

Oh, goodness! And I thought I'd seen snow in Utah! (And I have.) Love it! Forgive me I am a snow kid. I have food in the cupboard, right? Really wow, that has got to be inconvenient.

You guys are amazing Jen! I admire so much your tenacity. You have carried this burden so bravely with the help of the Lord. ((Hugs))

I am so glad that Daylon came through the surgery so well. Sweet little man. I am so glad to finally know his true identity.
But, in this day of cell phones I do not see many phone booths. This will make quick clothing changes much more difficult. Smirk.

All silliness aside you are in my prayers.


sharon kaye said...

I'm so glad the surgery went well. Daylon is a tough little boy. United prayers work miracles.
I'm excited for you to be able to go home. Do you remember when we thought 60 degrees in California was so cold. I'm sure you have a new sense of what cold really is. (I know I do!) Do you have to plug your car in to heat the engine before you start it? Most people in Alaska have to do that unless they park in a heated garage. (Thankfully we have a heated garage.)
You and Brian are amazing. Hange in there!!!!

Anonymous said...

So glad to hear that the surgery went well. I will keep Daylon and all of you in my prayers. Love all the pictures you added today - so totally awesome to see your big kids enjoying the snow!

Tina in NJ
Bella's friend

Linda said...

Hi Jenn: I am thrilled that Daylon did so well with his surgery. What a relief, huh?
I was praying for him and thinking of you guys all day. So happy for you.
What great pictures of the kids in the snow. This is something they will never ever forget. Praying that you guys can go home in time for Christmas. Love you guys. Keep the Faith. Love and lots of hugs Leah's Nana

Mom to Many said...

One of my boys says Daylon is cute and pudgie. Thought you'd like to know.


Amber said...

Holy Snow!!! That's something the kids wont forget! So relieved to hear the surgery went well.


He makes such a handsome Superman :) What a cutie!
Cant tell you how nice it is to hear he did so well yesterday. What a strong boy you have Jen!! Keep up the good work Daylon!! He is just so amazing! The doctors are amazing as well! What a GREAT feeling it must be to know your child is in good hands!
It sounds so soon to be leaving for Cali on the 20th when he just had 3 holes drilled in his head. But I hope everything all checks out so you can be with family...especially if your emotionally drained. Plus the fact its in the 60's here and no snow in sight .. I dont blame you!
That snow is crazy! Man and I complained about Utah! Utah's snow is nothing compared to that! It is pretty though. If for some reason you dont get the clearance to take DAYLON TO CALI..... here is one pro... at least it will be a white Christmas ha ha ha. Just a little humor!
Love you and your family so much! Thinking of you often :)

Gilda said...

Thank you for sharing all those pics of the snow. And I am so happy Daylon did so well, keeping you in my thoughts and prayers.Ps. what a handsome Superman!

The Cohen's said...

I'm so glad that his surgery went so well. I keep thinking what kind of testimony Daylon's going to have when he's older. I just imagine God holding his little hands through all of this. Sending prayers and well wishes to you and your family.

Anonymous said...

I'm so happy the surgery went well, what a relief! How amazing that you will probably still get to go home as planned! I've lived in MN all of my life and I wish I could go move to CA for a while! I loved the pics of your kids in the snow though, they all looked so cute.
I hope today is a good day for Daylon!
Shelly S. in MN

Lisa said...

Thinking of you all! Thankful yesterday went ok and hoping for a quick recovery. I hear what you say about craving normalcy and I'll put a good word in to Santa for you guys :)

Anonymous said...

We were so relieved to see your update this morning and soooo glad Daylon's surgery went well. He is so terrific and such a little fighter and so strong, no wonder he is Superman. The pictures of the kids in the snow are so beautiful.
We were praying for you and Baby Daylon all day and you are all in our thoughts and prayers. Hang in there Baby Daylon and come back to CA where it is warmer. Sending our prayers, love and well wishes to all of you. Take Care & God Bless! We Love You.

All Our Love;

Myrna & Dwight CA

Amy F. P. said...

I'm so glad to hear the surgery went well. I really hope everything works out for you to go home in a few days.

That is one amazing snow storm. Wow. How fun for your kids to have a white winter.

Jamie said...

Our God is an Awesome God :)
I got your last post too late to pray before the surgery and I was frantic to see this post, and then SO relieved by all your good news. Praise be to Jesus! I am so happy for your family! and I am of course praying for baby D everyday, every time I think of your family honestly. I keep envisioning Jesus holding Daylon and D slowwwwwllllyyyy healing. That warm feeling you get periodically is everyone on this blog giving you a prayerful squeeze and sending a piece of their daily energy allotment. Keep up the great works! (in the OR no less, great job!)

That snow is SO cool, just like last year in MD for us, send it our way please! (bet you never heard anyone ask FOR snow, lol)Hope the munkins slept well for ya that night :)
God bless and keep your family, we're praying, all of us.

Courtney Roth said...

I've been such a slacker on commenting and keeping in touch, but please know that I have been keeping up with you guys, thinking of you, and praying hard for my little man. He truly is Superman. That is so cute. So sorry you guys are having to go through all of this. I wish I could do something to make things easier.
Love you guys so much and sending big hugs and kisses!!!
Call me if you need to chat/vent/whatever.
Miss talking with you!

Mom to Many said...

Just wanted you to know I am thinking about your cutie. Hoping he is doing well with his recovery.

Jennifer said...

Oh man.... And I've been complaining about the amount of snow Stockholm has been getting today. My mouth is now shut (about that).

Praying for Daylon, for you, and your family.

Jennifer, Sweden