Monday, July 5, 2010

Day +10: Happy 4th of July!

Daylon's first 4th of July!

Happy 4th of July everyone! Well, it's now the 5th of July, but you get the message! Daylon condition right now, from a medical stand point is great. Dr. Tolar just did rounds and said Daylon is doing "shockingly well". His cell count is 3.0 (or 3,000) and his Absolute Neutrophil (infection fighting cells) count is 2.0 (or 2,000)!! This is so great! It's normally that high several weeks in! I really think that it's Caleb's cells getting to work! We jokingly call Caleb an X-man because he has super healing strength. He heals quicker than any human I have ever seen. This is especially good for Caleb since he's quite the dare devil and tends to get injured fairly often. We've been hoping that somehow it can pass to Daylon through the bone marrow! It's just wishful thinking, more of a joke really, but who knows! Daylon's weight was up again yesterday, but then down again today by a tenth a kg. His Creatinine levels are rising more and more each day showing that his kidneys are not handling the extra fluid and meds well. It's kind of a catch 22 because the med that is harming his kidneys the most is the Bumex (the diuretic). Once again, we're trying to find the balance. This morning Dr. Tolar told us that he will more than likely need dialysis in the near future, but it won't be today. I guess we'll be grateful that he's good enough today. He's had several platelet and blood transfusions and his counts still linger on the border, but at least it is taking. The doctors have told us that transfusions can happen daily for months after transplant. Thankfully, it's not that bad. We've had a hard time over the past 24 hours trying to keep him sedated...again. His body metabolizes medicine so quickly. At the moment, he's resting peacefully.

Yesterday the respiratory therapists came in to change his head gear for the breathing tube. It was less than a pleasant experience. I stood at the bedside (which they weren't thrilled with) and made sure the bandages were placed properly to protect his skin. When it was all removed we could see that his mouth was filled with secretions and they decided to suction him. They didn't like the silicone suction that we've been using (it has a weak suction) and replaced it with a larger, single holed plastic suction. I reminded them that he has EB and their response was "we know". I reminded them that his tongue and mouth blister easily and the tube can't move and again they said, "we know". Yep they know. That's why the suctioned his mouth and tongue until they realized it was sucking little perfect circles of skin off. He was unnecessarily bleeding and I was mad. They wiggled his tube around and eventually taped it at the measurement it's supposed to be, but in the process, they hurt him. I watched his pulse climb and climb and all though he lay there eyes closed and silent, his eyes began to water. Tears streamed so quickly down his face. It broke my heart. I brought it to the nurses attention and she gave him a bolus (shot) of Morphine. It reminded me of an article I read on lethal injection. Apparently, it's a painful process but they first give the prisoner medicine to paralyze and silence them. They are unable to cry out, so for the onlooker, things aren't too bad. Now, I don't really care about lethal injection because they're serial killers and rapist, but this is my Innocent baby. Lines were crossed and I'm officially in battle mode. I talked to Dr. Tolar this morning after rounds and he's joined our force. He's having another seminar about EB for the R.T. since they're obviously not where they should be with the EB kids. Oh, and ps- his breathing was HORRIBLE after they left from wiggling the breathing tube!

Okay, ending my rant now.

The fourth of July was kind of unusual, but fun for us. My parents surprised us with a visit! They flew in on Friday and will leave Tues. I've wanted to post a picture of the two of them, but they've been less than co-operative. Anyway, Brian and I went on a date Sat. night which was soooo nice. It's a very crucial thing in maintaining sanity...or at least when you have 5 kids. Anyway, yesterday my mom let Brian and I pick anything we wanted for dinner and we picked Albondigas. She makes the best Albondigas hands down. It wasn't your typical dinner for the 4th, but we loved it. Afterwards, my parents went up to the hospital and sat with Daylon so Brian and I could be together with the kids and watch the fireworks. We decided to watch them from the 8th floor of the hospital. Right as we were crossing the street in front of the hospital Ang and Ali (Bella's mom and sister) were leaving the hospital. Keira and Ali tackled each other in the biggest hug! Our kids were so excited to see Ali! I'm so glad that we're up here with the Ringgolds. Ali is right in between Keira and Caleb in age and she's the kind of kid that I don't have to worry about. I know she won't be teaching them how to freak or be oogling over the Jonas Brothers. My kids are the Strawberry shortcake, Mickey Mouse Clubhouse watching, sleeping with a stuffed animal kind of kids. I like it that way. Our lives are kind of parallel with the Ringgolds. We live in CA 20 minutes apart, share the same specialists (both here and in CA), the same hospital (CHOC), the hospital's EB nurse, Tanya, and now we're going through the transplant together. Daylon and Bella are 6 weeks apart in age (Bella's older) and 8 days apart in transplant age (Daylon Day+11 and Bella's Day +3). Yesterday, Bella's mucositis caught up with her and she was placed on a breathing tube and sent down to the PICU just 2 door down from Daylon. We're back together again! You can find Bella's story at

Buddies! The Edling clan and Ali after fireworks

Back to the 4th of July: We watched the fireworks with Ang and Ali and the kids had a blast. Then we went to the PICU and Keira and Caleb were able to see Daylon for the first time. It was a good experience for them. They want to know why we need to spend so much time up at the hospital and I think things got a bit clearer for them.
Next, we all headed back to the RMH for s'mores and bedtime. Brian and I were able to go back up to the hospital and spend time with Daylon after the kids were asleep.

...Ok. So, the Fellow just left and she said that Daylon's liver ultrasound came back positive for V.O.D. or Vascular Occlusive Disease. It's a side effect of transplant. The vains in the liver become too small for blood to pass through and it gets blocked up. It can be fatal but they feel like they caught it in time. A different doc. will be coming up to explain to us about some new drug they have to treat it. I guess it's passed the giving it to mouse stage, but it's still semi-experimental. It's the only option, but it's had good results so far. Uhhhh. Please continue to pray for Daylon. Pray that his cells continue to come in strong, that his liver will heal and the medicine will work, and that his kidneys will recover quickly. It's a lot to pray for, I know, but thank you.

Hope everyone's holiday was a happy one!


Bella's Blessings said...

Grrr.... that makes me SO MAD to hear about RT treating both you AND Daylon that way. I'm glad you went to Dr. Tolar with that. There is NO EXCUSE for that level of ignorance. I will be on my guard with them as well. Great news about counts! Thanks for sharing about Bella and us! We are so happy to be here with you walking this journey together, and can't wait till NEXT 4th of July when we're all sitting at a park together watching fireworks with two miraculously healthy 2 yr olds who used to suffer from EB. Cheers to that!

Amber said...

I think uncaring, snooty health care workers ought to be subject to their own bedside manner. That is so horrible!

Sara said...

stopping by from Bella's blog...we go to church with the Ringgolds. You are so right about Ali, she's the coolest kid and so much fun!

Praying for Daylon.....

Annalien said...

Your poor sweet baby is breaking my heart! Praying for complete healing. God bless and keep you in this time!

sharon kaye said...

We pray everyday. Thank you for giving us something to pray for. Good for you for speaking up to the doctor and nurses. You can rant to us anytime. I'm glad you had nice 4th of July and that your parents could be there. It's also nice that you have friends who are going through what you are. It's so interesting that you live close by each other.

Mom to Many said...

Go get them Momma bear. Poor baby.
So glad you got a date!
You two are an amazing team!


Mom to Many said...

Oh, and we are praying! :o)


My goodness I hope the Dr gives them a VERY VERY VERY LOOOOOONG SEMINAR so that from now on they will get it right and not cause unnecessary pain to Daylon!!! I cant imagine having to see that .... I am so so sorry. I honestly I am angry reading this but overwhelmed with saddness for Daylon being so helpless and going through such pain caused by others that could of been avoided!! Glad you were by his bedside watching!!!!!!!

I am happy you have another family there that your friends with and both childeren going through transplant. I am sure it helps a little to know that they are there and can truly understand what your going through.

I will be praying and I am HAPPY to be praying for Daylon every day in fact I pray up to several times a day for your little boy!.....hoping his liver will heal and kidney will recover...and of course the cells growing!! Hugs from Brooke in Cali

Christina said...

Lots of prayers coming for Daylon from MI!! The part in your post where you describe him crying while they were working on him was too much for me. That just breaks my heart :( I hope he can remain relatively pain free and everyone is knowledgeable of EB and respectful of your wishes.

Pati @ A Crafty Escape said...

I too have tears in my eyes... but it's from reading the injustice you just described. Poor little baby. I hope the trainning helps. Hugs & prayers from S. Florida.

Linda said...

Oh Jen:
I am praying so so hard for Daylon. When I read that he was actually crying, I started crying too. How awful that they have to go through all this. Prayers, hugs and good wishes coming your way. God Bless. Love Leah's Nana

Lacy said...

Praying for EVERYTHING and EVERYONE! Stay strong! Your baby needs you!

Courtney Roth said...

UM... if I could leave Tripp for enough time to make it up there and tell those RT what I thought, I would. My heart was BREAKING reading that. That is just NOT acceptable. You and your BIG beautiful family are in my thoughts and prayers daily. I wish I could be there with you guys to help out- watch kids, wash clothes, cook food-- but then again, I wouldn't even "know" you guys unless I had baby Tripp to look after :)
Keep your head up and your "EB Mommy claws" out! We love you all!
HUGS... Courtney (Tripp's Mom)

Jess Edling said...

Dude, that is IT. I need to come out there so I can be your muscle! I'll be like your mob enforcer - I'll just stand behind you and look fierce while you threaten the nurses with a smack down, Jess-style. NO ONE would cross us! (Hope that made you smile!)

I'm glad you have the Ringgolds there with you! Its great to be able to have someone close who understands and is going through something similar. I'm also doubly glad my nephew has such an amazing mom! You really are a rock star, Jenn. Love you!

David said...

Oh, so scary! We will pray for Daylon and for you all too! Sending you all lots of love, encouragement, and good vibes for all those taking care of him.

Alison said...

I didn't realize I was signed in as David. That post was from me. :) Alison

Anonymous said...

Praying for Daylon. That had to be the hardest thing to see his tears pouring out. I wish I could take all his pain away myself. But only God and morphine can do that! =)Praying for his healing everyday!

Corona, CA