Wednesday, July 7, 2010

Day +13

Daylon's hair is falling out, so I picked him up this new hat to help keep his head warm! Isn't he cute!!

Things have been moving along pretty well for Daylon. The best news is that his cell count is at a 9! Yes, that's right! A 9 (normal is 5-15)! His absolute neutrophil (infection fighting cells) is an 8!! Normal is 1-8! Oh my goodness! We are so excited!! I'm almost nervous that the tests are wrong the numbers are so good. The docs are completely shocked that his cells are coming in so fast! Due to the new cells, his Creatinine is at .72, down from the .98 of a few days ago (remember they wanted to start dialysis) and his wounds are FINALLY scabbing up! Plus were day 6 with no fever! Daylon went down to the OR today and had his G-tube changed into a G/J-tube so he can start feeds. The TPN is messing up his blood results, so they hope that putting food directly into his intestine will help him to process nutrition better.

There are a few hang ups, but it's nothing Daylon can't conquer! :) His weight right now is at an all time high. His at 13.9 kg which brings his water weight gain to almost seven lbs. That's a lot when you don't even weigh 25lbs to start with. This is more than likely the result of the V.O.D. I'm told that retaining water is one of the many fun (I'm being totally sarcastic) side effects of VOD. Thankfully, his liver isn't reversing the blood flow, so he's not too severe. That being said, the doctors introduced us yesterday to an experimental drug called, Defibrotide. It's not FDA approved for use, but it has been approved for some years now in Europe. There is a 10% chance of side effects like bleeding in the lungs or on the brain and a 1% chance of him getting nauseated or dizzy. Why couldn't it be the other way around? The hospital has used it on 18 kids and only 2 have had an adverse effect (one bleeding behind the eye and one in the lungs). Call me crazy, but doesn't that make the bleeding statistic 1 in 8? He's the first EB BMT to get VOD (VOD only occurs in BMT patients as a result to such extreme forms of chemo), so we don't have another kid as an example of what might happen for him. Brian and I read through everything and prayed about it and eventually decided to sign the form allowing the hospital to put him on the medicine. There is no other option at this time other than to wait it out. It's likely that if we do nothing the liver can cause the kidneys and other vital organs to fail resulting in death or permanent organ trouble. The doctors think he's a good candidate for the medicine so lets hope they're right. He's had several doses over the last 18 hours and will be on it for a minimum of 21 days. It will take several days to see the medicine start to work. Please pray that it will!

My parents left yesterday to head back home to California. It was such a nice visit. My mom started to get sick right before they left so that's too bad.

We lost our big room on the BMT unit. We had to move everything out by last night. I was so disappointed to have to peel my little decals off and take home Daylon's toys. It made the PICU stay feel permanent. I know it's not but I liked being able to go wander back to BMT and see Daylon's stuff waiting for him, like his was going to get better any minute. The PICU is depressing. I feel like I solider at times protecting a sacred monument that kids are trying to play on. There is a ridiculous amount of people coming and going, especially during the day. Yesterday by biggest annoyance was physical therapy. They wanted to move him around so his motor skills don't become delayed. Really? He's almost a year old and he sits. That's it. He can't roll, he can't crawl, he can't walk. I don't think that a 2 week coma is going to throw that curve. She was a nice enough girl, but I was going crazy with her moving him all around. She said that according to her notes, they've been working with him. Yeah, when he didn't have a tube down his fragile airway. Anyway, I shooed her away onto her next victim...which I'm hoping was conscience.

The other kids have kept busy with an attempted trip to a farm to pick strawberries with the RMH and a ton of Bar-B-ques. Plus having my parents around have helped to keep them busy with new people climb all over! All and all, things here have been good the last two days and we feel very blessed. Hope things are going well in your neck of the woods as well!


Brooklynne. said...


Mom to Many said...

Wow, a lot to metabolize. Great numbers! It's that x-men transplant that has done so well. What a precious gift. Good job big brother.

I'll bet your head just swims part of the day. So much is happening.

You and your family are doing something amazing. I hope that you are finding peace and comfort from above. It sounds like you are.

I am praying and thinking about your family.


Anonymous said...

Will continue to pray. Love the hat, so cute. Will be better when Daylon is awake, sitting up and smiling. sg - KS

Anonymous said...

I'm so glad to see an update - I continue to pray for your precious little guy knowing that our Heavenly Father knows every detail. I love to pray specifically where we can watch Him in each miracle.

I'm praying for you guys and his siblings too. Never seems that just one family member has EB but the whole family is effected.

Stay strong little man, GROW CELLS GROW!

Also praying for BMT docs and entire medical community, praying those involved with "hands on" care never put hands on without checking with you first.

Praying in Waterford, Michigan
Kim M

Pati @ A Crafty Escape said...

Glad to hear things are going well, he looks so cute in that hat! Sending special prayers that the new medicine will help. (((Hugs)))

Starla said...

Great news...keep the good news coming

sharon kaye said...

So glad to know the good news!

Curtis and Barbara said...

Hi Jenn!
Just wanted to let you know that I'm praying for your little boy. He's so special. He's such a fighter... and so are you! Hang in there. =)

Thinking of You,
Barbara (Garcia) Dalton


No way...that is SUCH AWESOME NEWS!! Those are some WONDERFUL numbers! Way to go Daylon...thats a tough fighting little boy you have !! happy for you guys...Love this good news! Your right nothing Daylon cant conquer!!

I hope his body will be ok with the doesnt sound like you had much of an option. But glad the doctors are positive about it and think he is a good candidate :) I will be praying for it to work for side effects please!
Glad your mom was there. she is a sweet woman..met her at one of Daylon's fundraisers and when she went to our ward to help Jennifer Russell after she had the baby.

Sounds like you have to crack the whip with some of the nurses sometimes...I am sure they mean well but you know your son's circumstances a lot better than any nurse!! I am GLAD you stand your ground!!

Picking fresh strawberries sound Delish! Heavenly Father is giving you guys blessing left and right YAY! The power of prayer is awesome :)

Thanks for taking time out of your busy busy life to even visit my blog let alone leave me a comment. I meant a lot to me! Always thinking of you guys. Good night.

Anonymous said...

Hi Jen & Brian,
Remember that sweet little baby that was born one year ago today.. You know, the one that the Doctors told you wouldn't make it to see this day? Well he's ONE today! Congrats! and HAPPY BIRTHDAY DAYLON! As always praying for Daylon's HEALING! :)

Anonymous said...

Happy Birthday Daylon! I love you so much! I am praying for you and I know that everything will work out!