Monday, November 15, 2010

Day +143 surgery--part one

Today was another crazy day. Here's the breakdown:
-this morning we waited around and were then told his surgery wouldn't be @ 7:30am and instead they would fit him in in the afternoon.
-we then went down to dialysis
-after we were there 20 mins., the Dr. called and said we need to come to the OR if he's going to have surgery today
-stuck in dialysis, they give us a time of 12:20pm tomorrow for surgery--not thrilled at this point
-got to the dialysis unit at 9am (keep this in mind) and clots clouded the machine.
-switch out lines, only to find out he has several clots in his central line.
-big opps moment-clots pushed into line and we watch for heart issues, meanwhile, I'm about to have heart issues
-at ONE O'CLOCK, Daylon is hooked up to the dialysis machine to start his 4 hour run
-it's decided that Daylon will also get a new Hickman and PIC line during surgery (Dr. Tolar is out of the country so he's being over ruled)-praying that the extra chance of infection won't come to anything
-Daylon's blood pressures climb to 170/100(due to infection from his tummy? Pain?) Again, I get heart palpitations :)
-dialysis ends at six o'clock and we emerge from the dark, no access to service, basement
Well, that brings us to now. Daylon's set up in his hospital bed and sleeping.Carin from Child and Family Life Services dropped off some toys and a mobile. He got to playing with them right away. It was nice to see him smile and play. He's been in a lot of pain today and it's always hard to not be able to pick him up and comfort him during dialysis. For being down there nine hours, he did great. He's such a sweetheart.
He has yet another corneal abrasion and his skin is starting to break down. It's typical transplant stuff...when there are so few cells (because it's so early after his transplant) and he gets a really large wound (ie:his belly), all the cells rush to the wound and the rest of his body suffers. He should still be able to heal quicker (benefit of transplant) and things will hopefully return to normal. I hope you all had a great day! Thank you for all your prayers! Sweet dreams.


Rob and Nicole said...

Poor little guy! I will continue to lift him up in prayer...and his family! I have been checking back all day for an update...hopefully tomorrow it will be a great post-op update! Night.

ANewKindOfPerfect said...

Wow, what a long day. I hope his surgery goes smoothly and he is able to start healing.

Anonymous said...

oh you poor people, this is sheer torture for all of you. He has been prayed for ALL day today and will be again tomorrow. He is the first person we talk about at work every morning!!! Very popular young man around these parts. Hang in there mom and dad....God is with you. GOd bless Daylon and give him comfort. Much love from So Cal, Bernie Gallagher xoxo

Jamie said...

Oh my I am very sorry for you guys, Daylon sounds like a seriously strong little guy! We're praying for the new cells to heal Daylon's belly with God's direction. Love and prayers~

Jessica said...

Yuck. Well at least by getting a PICC line the dialysis people won't have to freak out about using his hickman for meds / IV fluids.

The McLaughlins said...

I am so sorry to hear this!! Poor Daylon. One more day...

I will be praying extra hard tonight for Daylon and his doctors and your family. At least they will be able to put in his new line tomorrow too. Get it all done with one surgery I guess.

Daylon is such a strong little man. You are much stronger than I think I could ever be. What a blessing you and Brian are to Daylon. God knew what he was doing when He chose you two to be Daylon's mommy and daddy. Stay Strong!!

Lots of Love,
Amber McLaughlin, CA

sharon kaye said...

How frustrating!! Hang in there. Things will get better.

Mom to Many said...

Oh, boy. Sounds like Murphy has been hanging around today.
Hoping for an easier day tomorrow.

Anonymous said...

WOW what a crazy day for Daylon and for all of you! Sending prayers or strength, comfort and peace. Praying for the surgery to happen as planned today and all to go smoothly!

Tina in NJ
A friend of Bella's

Anonymous said...

Dear Edlings,

Sorry to hear of your day! So frustrating.

I've worked inpatient dialysis. It was extremely frustrating for me. I moved to outpatient and finally got out. I read your post and I know exactl what you're saying and I'm actually a little surprised. I always thought it was the way "our" unit was run; but seems to be the norm everywhere in the country. I got so irritated with the way things were handled....I could see a million ways things would be better with some little changes. Better for the patients, better for the staff. I was always brushed off when I said anything, even the nephrologist.

Anyway, here I am now caring for an EB child! After I left diaylsis, that's where I ended up! So, eventhough I don't have an EB child, I do care for one and I understand your frustrations in that regard, too.

Your post really hit home for me today.

I'm so sorry you have to deal with dialysis. I will say though, in recent pictures, Daylon's skin really does look good. I know it's not 100% or consistent,but don't forget about that leg that never healed that is now looking good!

Hang in there. Find that silver lining!

Kim M said...

So glad to see an update - I'll continue to pray for his surgery and all the line changes, etc.

Delays can be so difficult to endure, but we never know how that may have been God's protection from something undesireable for Daylon. Isn't it good to know that ultimately God is in control. :-)

Jennifer and Brian, hang in there, praying Phillipians 4:13 for you today.

Praying from Waterford, MI
Kim M

Anonymous said...

We were so glad to see an update this morning. We were wondering and praying that things were going well for Baby Daylon and all of you. What a rough day, so sorry to hear this. Hope things go well with the surgery today. There are always obstacles and more trials and tribulations to face. Heavenly Father is watching over Baby Daylon and is making the best decisions for your sweet baby. Jen he knows you and Brian are such wonderful and caring parents and knows all that you have been through and he is there to comfort you and watch over all of you. Daylon and your other children are so blessed to have you for their parents. You are blessed also to have such wonderful children. You are in our thoughts and prayers and we are praying, praying and more praying that everything will go well. May God give you peace, comfort and strength at these difficult times. Heavenly Father Loves You and We Love You. Hang in there Baby Daylon, Jen, Brian and other siblings, we are here for you.
Fight Baby Daylon Fight. GRR!

All Our Love;
Myrna & Dwight CA

Lisa said...

What a frustrating day! I'm sad things have been so tough lately. It sounds like Daylon is being a trooper as always...he's such a sweet little fighter. Hang in there and know that you have a "family" rooting for you. I'm not religious but I certainly think about you all every day...I believe in positive thinking and I really think things are going to get better.