Tuesday, May 18, 2010

work up

Daylon had another busy day at the hospital. For about 6 hours each day, for apprx. 5 days, we go to the hospital for a series of appointments and tests. Yesterday, we met with a nurse for a history, they drew 13 vials of blood, we attempted an EKG (the tabs were too sticky, so I'm trying to figure out a way we can attach the leads without adhesive), he had a chest X-ray, and I had an appointment with a wound specialist and learned how to properly care for a central line. Today both Caleb and Daylon had appointments, but unfortunately Caleb came down with the flu bug Sadie has. Actually, it's been quiet the epidemic over here. Violet and Daylon are the only ones to not get sick...although, Violet does have the nasty cough. Our Sickies are room bound until the flu leaves. Anyway, Caleb's appointment has been postponed until Friday we think. The schedule is really up in the air. Today we met with a dietitian (who put Daylon on vitamins), our scheduling nurse, Kim (who resembles Monica Potter)and Dr. Miller ( a fellow for Dr. Wagner) and we went over the medicines and their dangers, and a surgeon who will be putting in the central line tomorrow. The surgeon also looked at his G-tube and said that it is leaking too much. The hole for the G-tube is HUGE! Way bigger than the G-tube. He said they probably put in stitches, which he says, really don't work on EB kids because their skin tears and the stitches fall out. The hole will have to stay because the risk of sewing two exposed sides together puts Daylon at risk for secondary infections. He's hoping it will close in 10 days or so. His chemo is tentatively scheduled to start on the 25th, but the hole closing may change that. Tommorow our big thing is surgery for the central line...at 5:30am! :)
Everyone here at the hospital and the Ronald McDonald house are so amazing. So many kind, loving people. We really feel like we're in good hands. Thanks for all the prayers! We are so blessed!


Grandma Kris said...

The hole is too big!?! That is heart wrenching.

I am glad to have this way to keep in touch with all that is happening.

I wrote a letter of thanks to all the people who donated through us. Your letter of thanks was included in ours. I will send it to our family and take it to the neighbors. Everyone will be happy to know that the fundraising efforts have been successful and that he is doing well. Jennifer's appreciation will mean a lot to them also.
Blessings to you!

Jan's Blog said...

Thank you for the update. Since Lura told me of this it has become a part of my daily life. That sounds stupid doesn't it. I mean to say that you are all in my thoughts and prayers. Only you know what it is to live with it everyday and that breaks my heart for all of you!

Care for Anabella said...

Hi Jennifer! Glad to hear your into the swing of things. Wow. 5 car seats for the airport. What a logistical puzzle just getting there! We had to do an EKG at CHOC and the tech plus the doc had to physically hold the leads against her body, and do half at a time! It was C-R-A-Z-Y. Add to that it was the last barrier to discharge out of the NICU, so basically everyone was waiting around to figure out how to pull that off! No fun. I feel for you on that one! We look forward to sharing the journey with you soon! Ali and pray for Daylon every night (and the rest of you as well! This EB thing is a FAMILY AFFAIR, right?) Blessings, Tim Ringgold

Jenny T said...

I just wanted to say hi and let you know that I will follow you on the blog. I live in Gothenburg, Sweden and I have a 1 year old daughter with Recessive Dystrophic EB. I wish you good luck with the procedure and I will keep Daylon in my thoughts!

If you have the time, welcome to visit www.ebifamiljen.se where I write about my daughter Natalie.

Best regards, Jenny

Jess Edling said...

Oh man, the hole is too big? That's breaking my heart Jen. I hope it closes up on its own soon!

Still miss you guys. Very weird not to be able to walk around the corner and say hi. I'll call you later. Love ya!

Leslie said...

Hi Jennifer

Let me know that the box of supplies made it to RMH for Daylon. I am still working on the Tubi Socks and will make it happen!


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