Sunday, November 14, 2010

day +141- back in the hospital

Today was emotionally draining and I'm ready for tomorrow. 7am this morning Daylon was screaming and blood was rolling down the side of his tummy while I changed his dressing. Brian couldn't even look at his belly and I was done. It was one of those moments where you either have to start bawling or start yelling, but some emotion is going to bust down your door? It was that moment. I called thw hospital, asked for the Pediatric Surgeon on call, and then told him (without losing it, I might add) that he WILL fix this giant hole TODAY. Yesterday he was in this guys office at 10am (yeah, no date hour :( )and they said he'll have surgery at some point next week. Today he told us to take him to the ER and he would look him over. Long story short:he didn't look at his bare skin, he refused to do the surgery this weekend (b/c the proper EB trained OR staff isn't all on) and he said he would try to squeeze him in sometime during the week. Oh! He also said that if I wasn't able to change the dressing for his whole stomach,then he could be admitted so the nurses could do it. :/ It was like he didn't get that this kid was covered from the neck down constantly until 2 or so months ago! Sorry. Guess I'm still mad. Anyway, I said that he needed to help him on Monday for sure then and he said he would try to fit him into his schedule Mon or Tues.if he were admitted,but he can't promise anything. I took the offer and emailed Dr. Tolar on the spot. I PRAY that he comes through for us and tries to throw his weight around to get it done asap. It's nice to see everyone on 5D. They're so wonderful. Everyone showers Daylon with attention and they're fuming right along with me. :)
Daylon had dialysis today also. I was lectured for most of it by 6 different dialysis staff about how he shouldn't be on IV drugs and how I'm ruining his line by meds through it. They poured on the annoyance like there's no tomorrow. I wanted to just say, "Are you joking? You're mad at me for giving him his meds?!" They refused to allow me to give him his CSA because "he can miss it" and his Keppra (seizure med)because "it can wait". I've been like a volcano all day and I think you all are paying for it with my vent. Sorry.
Anyway, Daylon is now also running a fever of 103.7 and his belly is so raw and eaten in parts that what looks to be his fat is starting to poke through in the areas where the most skin has melted away. Also found out that his bile PH level is one...so, pretty much pure acid.
The surgery will take about two hours and Daylon will be intubated and paralyzed for it. Please pray that everything will go well in surgery that he will be extubated immediately afterwards. I put on the "Pandora" website so Daylon can go to sleep. The songs haunt me. They're the same 20 or so songs that played for Daylon when I had it on when he was in the PICU. So many horrible memories are flooding my mind as I type. I think it's partly to blame for my fear and hysteria in this post. That and today while I was changing Daylon's dressings Caleb said:
Caleb-I'm gonna be sad when Sadie's and Violet's birthday comes (Dec. 3rd)
Me- Why?
Caleb-because that's when Christmas is coming and Daylon's going to die and we're going to go home.

We told him that Daylon would be fine and he was coming home with us. I know he's probably just confused because unfortunately,two of his closest friends here had their EB baby die and then they leave us and go back to California. He knows we're going home right before Christmas, so I think it's how he sees all this. I'm sad that my kids have had to experience so much pain in their short lives, with so many grown up thoughts and concerns. His words have weighed on me all day.
He has this surgery and then his brain surgery that I'm nervous about. His stomach is more than likely infected as well, which will be another challenge for him.
Thank you all for helping to carry us through our trials in prayers and friendship. It means the world to us.
Thank you to all of you who attended the blood drive today...whether it was in California or New York or somewhere in between, thank you. Sweet dreams.

23 comments:

Chris The PEZ Man said...

I'm upset to read this too. How could the doctor be so callous?
I did give blood today in honor of Daylon. I wish I had my camera. The cookies they gave out had a butterfly on the package. :)
Keeping the prayers coming!

Anonymous said...

Oh, it's been such a tough day for you! This surgeon seems not to understand that when an EB parent doesn't know how to do a bandage, the staff wouldn't know also.
Sending love Daylon's way and wishes to get better soon! I'll be praying for his operations to be very, very successful!
I am sorry that I can't find words that can help in such a difficult situation. Only hugs can say what I mean.

Elena

Anonymous said...

I can only admire you for how you are fighting for Daylon and how you are dealing with all this. I pray for you, the surgeries to go well and for your other kids.
Keep all the positive thoughts up!

Andrea said...

Oh my word...I am praying like crazy for your family & especially little Daylon. It is so hard to stay so strong & to stay calm when the doctors just want to "brush you off!" I just don't understand how they can act the way they do, at times!! Anyway, I am sending a big cyber hug to your family! God be with you!

Rob and Nicole said...

Oh my!..I can't believe the nerve of that doctor! Poor Daylon, I will be sure to keep him and you guys in my prayers. I pray the surgery goes well and that Daylon starts getting better. May God bless you and your family and of course Daylon! Prayers!

Amber said...

Stay mad enough until you get the Dr. to do what you want. They get way too detached at times to see the picture clearly.

BRIAN AND BROOKE said...

Oh my!! I am mad too!!! Wow, how did you not explode? I sure would have! I am so sorry about Daylon... I pray the doctor will come to his senses!! My heart was breaking reading what Caleb said. I am sure its alot to take in and understand as a child. I hope you have better days to come and that you can feel at ease.
PRAY ALWAYS
Hang in there you have such a strong family and there is light at the end of the tunnel!!

Patrice said...

Praying for sweet Daylon and for you guys. I'm so sorry you are feeling frantic and overwhelmed. You are so strong, and honestly, I don't know how you've made it this long. Praying for your peace and comfort and that surgery goes well and things can become more stable again. Love you!

Anonymous said...

Praying for Daylon to feel better real soon and the doctors to do the right thing for him. Praying for peace and calm to you and your family. I can not even imagine how hard this is and what an awesome job you are all doingh for your sweet boy.

Friends of Bella
Tina in NJ

Katherine @ Grass Stains said...

Always praying ... I know that when it affects your other kids, as well, that probably makes it the hardest. Thinking that Caleb assumed that Daylon would be gone by Christmas just breaks my heart. Love to all from Birmingham.

Rhonda said...

(((hug))) from North Carolina. Please keep Daylon's virtual family updated as you can. Thinking of your family and Daylon. I pray the doctors and nurses will have steady hands, lots of wisdom, and compassion to help Daylon through this crisis.

Carla Spradlin said...

I'm so sorry to hear about Daylon. I don't write much, but follow the blog. I'll be praying for Daylon to get better. I can't imagine how much pain he must be in. I'm a nurse, and something like that is painful for an adult. I'm glad he is back where the docs and nurses know him. That makes a big difference.
Carla Spradlin, Portsmouth, Ohio

sharon kaye said...

You are amazing. I think it handled all much better than you think you did. We will pray. Hugs to all of you.

Mom to Many said...

Jen,

I think you need a good friend with a big shoulder and a good cry for a minute. I am hopeful you are finding that on 5D.
I will be praying for you. I am so sorry things have been so hard.

((hugs))

Cheryl

ANewKindOfPerfect said...

I am so sorry that you had to deal with that doctor's attitude while your poor little guy is in pain. I hope and pray that they can get him in to surgery SOON and clean up his little belly. I hope he isn't in too much pain in the meantime.

Jess Edling said...

Um, remember that offer for me to fly to Minnesota & be The Muscle? Yeah, that offer still stands... ARGH! I hope Dr. Tolar can get the situation under control, with both the Dr. and the dialysis staff. "He can miss it"... REALLY?! Grrr.... Sharon Kaye is right, you are handling it much better than you think (also much better than me. I'm yelling at the wall right now. Poor wall.) I love you!

Mike and Dejah Morris said...

I'm sorry to hear you are having so many problems with the doctors. That's horrible. As for your kids, I don't think you need to worry about them going through this. When this is over, and Daylon is healed, your children will remember the faith and strength of family. I think they will remember how strong you are all together, and how blessed you have all been.

Anonymous said...

Praying for all of you. God be with Daylon and his family!!

Joy and Payton

Karen said...

Praying for you all and Daylon. It is tough having to be an advocate for your child. I'm having to do it for my Mom, and that is hard too, but I'm sure, not as hard as what you're dealing with.

Praying for strength for you--especially when you have to "educate" those doctors!

Janet said...

I've been following your blog through Jonah's blog from the very beginning. We are all praying for Daylon and your entire family.

Anonymous said...

Come on mommy stay mad!!!! The squeaky wheel.....blah blah!!! You have showed remarkable restraint and wisdom. God bless you and keep you strong for your little warrior. He has another battle ahead of him tomorrow and he will get through it. Prayers are coming to you all from So. Cal. (((((hhhuuugggsss))))
God bless, Bernie Gallagher

Anonymous said...

Praying that all goes well tomorrow, Are your kiddos at home in counseling? It might help as they have so much time away from you, and really you can't answer all their questions with certainty... no one can. It has helped my kids sooo much, and prepared them for a long road ahead. Prayers for your family. You are amazing.

The McLaughlins said...

I am so sorry to hear about Daylons day. He is in my constant thoughts and I'm praying for him always. He is such a strong little man. He's an inspiration to me on a daily basis. You as a mom are an inspiration to me Jen. Stay strong.

It breaks my heart to hear what Caleb said. I just wanna give him a big hug.

Lots of Love,
Amber McLaughlin, CA