Friday, September 10, 2010

Day+ 77 &78

Hey all!
It's been another 36 hours around here. During dialysis yesterday Daylon's line kept filling with air. After an x-ray they found that his Hickman was pulled out from near his heart. This morning at 10:30 he had surgery to replace it. This is a really big deal actually. Daylon has needed a new line for months. His red port hasn't pulled since the week after it was put in, there was the mystery infection he's been fighting, the line has been clogged (since it's used for meds and dialysis). He need an extra line when he was in the PICU to be put on Prisma, but they couldn't do it. Since it's out of place and he needs it, it had to be done. It took a HUGE doctor pow-wow, but they figured it out. The head of Anethesology was present (to try to ensure he not be intubated), along with Dr. Akerman (an EB trained surgeon - his skin can't hold a suture). The surgery was successful. The new line has been placed, just a half inch down from the last one. He did lose 100cc of blood, which made it look like someone had been murdered in the OR! :) He's being dialyized now and receiving a blood transfusion at the same time.  According to Dr. Wagner, skin infections are likely with JEB kids (I dunno why), so he's being checked on frequently throughout the night by the doctors to watch for signs of infection.   He actually seems kind of paranoid about it, so maybe I should be more worried that I am. Come to think of it, it is one of the reasons his surgeon said no to a separate dialysis line. I need to investigate! :)

Daylon's first practice of dialysis in the outpatient center at the Mayo Bldg. He has to pass several runs before he can be discharged. This run failed since his Hickman broke.
 Dr. Wagner has come on as attending, so it's been nice to get his opinion on things. He told me that he is so shocked with Daylon' s improvement. He said that he has learned from the last several patients that the "going HOME" guideline for EB families should be 6 months now ( it was around day +100).  Please pray for EJ and Sam (links off to the side of the page) who are having post BMT complications and having to deal with them at their local hospitals which are perhaps, not as knowledgeable on the topic as we would like. It's actually got me thinking a lot about going home and the possible post side effects that Daylon may have. Will CHOC or any hospital in our area be able to cope with the problems he may or may not have? Daylon's neurological condition would be treated very differently at any other hospital, as Dr. Wagner has warned me.  In our conversation last night he also said (paraphrasing), "I would be willing to bet you a billion dollars that if he had been at any other hospital, he would be dead right now. I was ready to ask you guys about ending life support when we found about the necrotic tissue and how much of his brain was effect. I had decided to talk to the radiologists myself before I spoke with you. I sensed the hesitance the two men had when discussing his brain, that I felt that something wasn't right and I should wait a few days. Over the next couple days you became optimistic and Dr. Tolar was optimistic, so I couldn't. Then, over the next week, he got better." I'm not going to deny that I got teary eyed hearing this story. I was so shocked to think that a thing like our attitude had played such a big role in Daylon being alive! I feel so blessed that Dr. Wagner was able to put science aside and listen to the Spirit. I feel blessed to have Dr. Tolar as his doctor too. He has never once given up on Daylon and has always backed me 100% on what I think. He's the kind of doctor that has made the Sunday afternoon visit to the hospital to sit and talk with me while I cry and worry. These are good men and good doctors who are trying to save my son's life. To say I am forever grateful is an understatement. I don't know how to express how blessed I feel that they were willing to take a chance on not only EB children, but Junctional EB children. They don't fear the money lost on the research for children who don't live long enough typically to give much results as others before them have. Instead, there's a definite urgency with them to help the children before it's too late.  I can't say enough. Daylon is blessed. We are blessed.
  Other Edling news
Keira started kindergarten on Thursday! I have been looking forward to this day since I was like 14! I've always wanted to be a stay-at-home mom and this was always a huge event in my mind. Thurs. and Fri are evaluation days. Starting Monday they'll challenge them from where they're at. I am all for this program! I love that Keira's going to be challenged daily according to her own specific capabilities. They also have a great music program which Keira is super excited about!

Showing off her "Princess and the Frog" backpack

Not everyone was happy Keira was leaving
Violet LOVES her picture taken! She's such a ham...and Sadie is the exact opposite!
Walking to school as a family!...minus Daylon :(
Going down! The school is in house 4 where we live! We're on the second floor, right above part of the school! As you can see Caleb and Sadie are not thrilled on the Kindergarten thing. Sadie refused to even let me take a picture of her.

 Keira at her cubby
her desk!

 The class daily work and homework book
Her teachers, Ms. Britain and Ms. Hoop
One last peek at our Kindergartner through the door!
Sadie wants her, yeah. She's laying outside the classroom door.
Caleb, Sadie and Violet made cookies to celebrate the big day! You gotta have warm cookies when you get back from your first day of school!
"When can Keira come play with us?"


Michelle said...

That's pretty funny that Caleb and Sadie were less than thrilled with Keira starting kindergarten. At least she was excited about it! :) She kinda looks like Emily to me in these pictures!

Your doctors sound like good guys- I'm glad you have them!

ANewKindOfPerfect said...

That is awesome that RMH has a school! What an amazing organization. It's sad and funny at the same time to see that Caleb and Sadie were unhappy. I'm glad Keira liked her first day!

Reading about Daylon's prognosis takes my breath away. My daughter had an 18 minute cardiac arrest during an operation at CHOC. They told us that night to consider removing life support. We refused. She went home 4 days later, in the same exact (already brain damaged) condition she was admitted in. There was NO evidence of damage from the cardiac arrest. These little ones are SO resiliant!

jeanine said...

What a blessing it is to have doctors who listen to you... and especially to the spirit!

I love that Keira loved school... so sad that her siblings weren't excited. She must be a great big sister for them to be so sad.

Mom to Many said...

Thank Heaven the source of the infection has been found. I am so relieved!

The McLaughlins said...

Those are great pictures of Keiras first day of school. Very exciting. It looks like they have a great kindergarten program there at RMH. Were there a lot of other kids in her class? Too bad Daylon couldn't be there to see her off as well. Maybe next week!

I'm glad Daylon has such great docs and that they found the source of that nasty infection. I'm sorry he had to have surgery but I'm so glad it went well. You guys are so lucky to be there in that program. It sounds like you have the best of the best helping Daylon out. Plus they listen to you guys and allow Heavenly Father to guide them. Lots of prayers are still coming your way. Stay strong!

Take Care,
Amber McLaughlin,CA

sharon kaye said...

You really are blessed to be in the hospital with the doctors you have.
Yeah, for Keira. That is such a fun age. I loved teaching Kindergarten.

Emily said...

Yeah for Keira!! I am so happy that she likes school. I am so grateful that you guys have such good doctors on your team!!


I am glad the surgery went well!! I need to catch up to speed here!! Was out of town! Am so thankful for the Doctors and how they have never given up on Daylon and continue to deal with whatever issue comes along and figure it out!

I love the picture of Keira and Caleb....... he is so upset to see his sister go...that is SO ADORABLE!!