Friday, July 16, 2010

Day +22: dialysis

Our new MVP!
So, I think dialysis gets a bad rap. There's this definite connotation that goes along with the word. Every time I hear someone mention that someone else is "on dialysis" everyone listening sighs or says stuff like, "OH! You're kidding.". I've been dreading the idea of dialysis, but yesterday when they told us that he would start tomorrow I really looked into it. As far as I can tell, all the sighing and sympathetic comments must just be from knowing that if dialysis is taking place, than the kidneys is in a sad state of affairs. The machine just pulls the blood out, cleans it and puts it back. It's not anymore dangerous than having a normal central line. They're actually using the hickman Daylon already had in. Low blood pressure is our biggest concern but Daylon's actually needed medicine lately to keep it from going too high, so that shouldn't be a problem. Of course, with blood pressure concerns comes the need to check his blood pressure more often. Every 10 minutes actually. I've asked the nurse to alternates appendages and we're still doing manual checks, so hopefully it won't cause too much trauma. The goal for today is to bring him down 500 grams. It will be DAYS at this rate to bring him back to his normal weight, but I guess we have nothing but time here. Yesterday I was a wreck because his levels were all shooting up, his lungs filled even more with fluid and by 10 o'clock last night his tummy and chest were so tight that when that when the resident came in and pushed on his belly, the skin tore around her finger. His levels shot up a bit more today, but it is nice to know that tomorrow looks to be a better day.
Snuggle Buddies

Daylon's count is still going strong! He's been off the GCSF (cell fertilizer) for 8 days and his counts are 8.3 for white cells and 6.5 for Neutrophils. He's completely within normal range. The BMT doctors continue to be impressed with how well he's doing BMT wise. His skin has continued to heal faster than normal in some areas. I am so excited! I think in a few days I'll post some before and after pictures. Do you guys want to see some minor area before and after photos? There's a poll to the side of the!! :) His skin is still blistering and tearing but at least it's not these giant sores for months anymore! He's completely off the paralytic and he's doing pretty well with being taken down on the vent. He's still getting the same amount of oxygen but he's initiating the breaths. It's kind of this dance between all of his issues...two steps forward, one step can't dance well until you're dancing together.

Speaking of together....Daylon and Bella continue to be "double trouble" around here! She's joining Daylon on dialysis today! I was hoping they would bring up their machines together so I could snag a picture, but no such luck! His nurse came up just a bit before hers. NUTS! Oh, well! He actually had to have TPA put into his lines to loosen things up so maybe they'll start at the same time! LOL! Thank you for all your prayers! He's needed them! :)

The Whole Team!


Anonymous said...

I am SOOO glad that you are feeling better today! =) He's such a trooper.. I don't know you or your family..but I feel like I do! I care so deeply for all of you! Daylon is ALWAYS on my mind! My grandmother's church here in Corona, CA has a "prayer chain" (every day 24/7 SOMEONE in their church is praying.. and they have a list of names of people that they pray for) I'm going to make sure that Daylon and Bella are added to that list! :)

AND his WBC is 8.3! YESS!! Caleb's Super Hero cells are doing their job!


Take care!

Carla and Matilde said...

So good to read you today! You look much more positive and confident. The numbers are GREAT!!!
After reading your post, I just had this feeling that things will start to improve from now on. :)

Keeping brave Daylon and sweet Bella in my prayers.

Carla and Matilde (14-mo with EB) from Portugal

Anonymous said...

When I first opened your Blog my heart sank, then I realized that this is just another small step to recovery. I have been visiting your blog everyday and praying for your family. May the healing continue.

Anonymous said...

Reading your new blog today made me smile. I'm so glad he is doing so well. I'll be praying the the dialysis does what its supposed to do and someday soon I hope we are reading about his full recovery. Stay strong. You are an awesome woman and an even better mom.

My family will keep praying for Daylon and your whole family.

Lots of Love,

Amber McLaughlin, CA

Pati @ A Crafty Escape said...

I love your dancing analogy... very sweet. It's nice to hear that things are moving in the right direction, even if there are bumps on the road. Please know we are all praying for your sweet Daylon and the rest of the family. Hugs.

Tanya said...

Your EB nurse back home is praying for everyone!! The Edling's and Ringgold's are two of the strongest families I know, your love patience and perseverence to give your children everything is inspiring :)


Hi, Hope its been better days and that dialysis is doing well. Numbers are looking great! Thanks so much for always taking the time to post about Daylon :) I am sure your always tired and busy.