Saturday, November 27, 2010

Wow, today has been a trial for me in itself.  Skyler went down to surgery early this morning.  Those two hours of waiting were pure heck (I dont think I should say the real word, but you all know what I mean) and seeing him for the first time being wheeled back in the room put me into shock and I totally broke down right there in the hall.  He just looked so different. He was super puffy, his stomach was a really weird shape from laying in different positions on the table, and being intubated just makes him look different. 

The surgery went ok.  They replaced his dialysis catheter and put a new central line in behind his knee.  They took a sample of the little ball from his leg to biopsy, did a bone marrow aspirate,  and put an arterial line in (a line that goes into an artery that reads his blood pressure constantly)   He came back to the PICU to recover and then was supposed to go down and get an MRI but he was too unstable.  It was really hard to ventilate him down in the operating room and he was on pretty high settings on the vent when he came back, so they decided to give him a day to recover and see how he is doing tomorrow.  His blood pressure also dropped pretty low so they had to pump him full of fluid (I know that doesnt make sense when they are trying to get fluid off of him, but he didnt have enough fluid in the vessels it had leaked into his tissues) and started him on a blood pressure medication to bring his pressures up.  After a couple of hours they were able to stabilized his blood pressure and started him on continuous dialysis and are slowly starting to take the fluid off.  He again is surrounded by machines that are helping keep him alive.  I hate that!  Up on the floor he was down to one pump on his IV pole and now it is covered again.  Hopefully it doesnt take too long before we can start to eliminate some of these.
The last time he was intubated they had him completely sedated, this time he is just on a little Fentanyl drip and he is still pretty with it.  He opens his eyes sometimes when I talk to him and nods or shakes his head when I ask him questions.  He even mouthed that he loved me.  Even through all this crap that he is going through, he lets me know that he loves me.  Wow, I just cant put into words how much I love this boy.  He is amazing in every way possible and I am SO lucky to be able to call him mine!


This is what Skyler looked like a little over a week ago.....


This is Skyler today....




15 comments:

Beth.. One Blessed Nana said...

continuing to pray Crystal. God is giving you such amazing strength and I just pray that you rest in His arms and let Him carry you through this.

Give skyler hugs for me!

Amy Stewart said...

Im so sorry that you guys have to go through all this. we are praying for you both.Please let me know if you need anything. Love you guys

Lindsey Hill said...

We are praying so hard for you and skyler right now. You are so lucky to call him yours and he is so lucky to call you mommy! You are his rock! Love you Tons crys!!!

nsudburyfam said...

We are thinking of you always.

Briana said...

I can't even imagine what it must feel like to be going through all these ups and downs and to be seeing him looking so bad. When I picture you there with him, I start to cry. What a sweet boy! No parent should have to go through so much - watching your child suffer and not knowing how things will turn out is THE worst - and at the level you're experiencing it... ah! My heart aches for you. Know that we're thinking about you tonight - we just finished praying for you and Skyler a few hours ago in our family prayers. Lots of love and good thoughts your way!

p.s. And thanks for the updates - the central line in the knee thing is fascinating!

Mummers said...

Our hearts and prayers are always with you.
Mike & Val Thomas

Dani said...

You and Skyler deserve to have a break! A REALLY BIG BREAK!!! Hopefully when he recovers this time it will be more than a break. He will get better and stay that way. This roller coaster you are on just proves what a strong fighter Skyler is and what an AMAZING mom you are! You are BOTH so lucky to have each other!

Amanda said...

This just isn't fair. You and Skyler both have been through enough. Skyler has fought back once before and I know this little guy can do it again. He is full of miracles. We love you and pray for you all constantly.

Amanda Brady Millie and Austin

lindsay Roscoe said...

Pleae let me know what we can do for you. I hope you have someone with you so you don't have to sit up there alone. I will babysit anyones kids, so they can go be with you guys..anything no matter the request. Prayers and love
The Petroff family

Chelsea said...

Crystal, my heart is breaking for you right now. I am litterally sick to my stomach. I am so sorry you are having to see him like this again. I'm sure it brings back all the fear and anger you thought you were DONE feeling. I am praying that this is a small set-back that is going to be a giant leap in the recovery that is going to get you both out of there! That spleen was causing way too many problems and though he looks bad now, I have every confidence that this is only going to help him get better in the long run. Keep your chin up, I am only a phone call away if you need a cry buddy. Love you both more than you'll ever know. XOXOX

Whidbey Woman said...

Praying for your little guy.

Tammy said...

We have not stopped praying for you and Sky and will continue always. You're strength is amazing. I love you Crystal.

hembrookadelman said...

What an inspiration you and your son are. I was introduced to your blog through someone and haven't missed a day checking in on you. My family now asks how Skylar is doing? His name is on our prayer wall at my children's school and gets a special prayer from the third grade class. Sklyar is always in my families thoughts and prayers. We hope you will soon have the break that both you and your beautiful son deserve. My nephew spent many months at a children's hospital and the removal of his spleen was the turning point for him also. I pray that this will help Skylar make that turning point. Bless you and your son!!

Becca said...

I came across your blog through Amelia's blog. My daughter is battling with a Neuroblastoma and Congenital Heart Defects. I will keep this little guy and you in our prayers. I know those days of waiting through a surgery and to see them so banged up afterwards. If you need to talk, email me @ rebeccacason1@yahoo.com and I will send you my phone number. Hang in there. We are all pulling for ya.

Katrina Mortensen said...

I'm so sorry you have to go through all this. I can't imagine how you feel. I like what was said in the first comment you are very strong and so is Skyler he is so amazing!! I know Heavenly father is carrying you both while you go through this. We pray for you and Skyler.