Wednesday, July 28, 2010

Day +33 and Day +34

Say, "Cheese!" Daylon, Daddy and nurse, Rachel
Clown Baby
Things around here have been as crazy...Good crazy, mostly! If you can believe it!

Skin and BMT:
Daylon had his blood drawn on Day+28 and the results are in! Daylon's CD 15 cells (short lived) are 100% engrafted with Caleb's cells! Daylon's CD3 cells (long term)are 91% engrafted with Caleb's cells! 91% isn't 100% but it's still really good. They expect to see that in the upcoming checks that Caleb's cells will gang up on Daylon's and put them out. Anyway, the transplant was a success!!! Dr. Tolar came in yesterday for the day +28 skin biopsy (it was Day+33 but the lab was closed on Day +28). I had all my bandage and bath supplies ready, chucks on backwards (help with contrast on the pictures) hand washed and ready to go! Dr. Tolar and I each took a leg and started cutting off layer after layer of bandages. Once both were removed, I looked up at Dr. Tolar and he just said, "Wow. This is very rapid healing." The photographer snapped leg and toe shots, and we moved on to undressing the arms. Dr. Tolar just kept repeated, "This is very rapid healing" and his tone almost became serious. More pictures and then his chest was uncovered. By this time, Dr. Tolar is just kind of staring, so I offered to show him the before and after post from the blog. He and the scientist just nodded as I showed them picture after picture. I was kind of giddy initially, but then watching face caused me to be a bit concerned that somehow the "rapid healing" was bad. Finally, he pops up and says " I agree that he his healing really quickly and I can't explain why. This would be unusual for normal skin to heal so fast...but we'll take it!". WOO-HOO!! That's Caleb's X-men powers at work!! Ha, ha! He said only one other patient had so few new breakdowns, but no one has healed like this. He had to ask we where he did the first biopsy and when I showed him he said, "Where? OH! I see! Wow, this is amazing!". They took 8 new samples of skin by a blood blister on his upper left thigh.Oh! Cool side note: the lady who preformed the procedure was trained by Dr. Metz (his pediatric dermatologist back in CA)! Small world!
Next was a skin fragility test where they hold a 3 hole light suction cup up to his skin to see how quickly he blisters. Last time it was 5 min. and 18 sec. and this time it's 8 min. and 49 sec.! 3 1/2 minutes quicker in one month! Aaaaamaaaazing! Normal skin is 60 minutes, so he has a way to go,but wow! We're all so stoked at the possibilities that lie in front of him!
Current Condition
Subdural Hematoma: Still no more seizures, which is wonderful, of course. Neurologically speaking, he his moving forward. Everyday further away from this weekend we go, the safer he is. They would like to do an MRI on him, but the PICU won't allow it because they feel it's too dangerous for him to travel. If the machine can't fit in his room, it can't be done.
Kidneys: He weight has been somewhere in the 14kgs before dialysis and after it's somewhere in the 13 kgs. Since this weekend the goal has dropped to a net of 600 grams. The last two days they tried to up the game again to keep up with all the platelets he's being transfused with (if it drops below 100 he gets transfused and BMT kids naturally sit in the teens, so the transfusion are constant). His body can NOT keep up with these crazy new demands, and his blood pressure is dropping quickly. He's on dopamine for low blood pressure almost constantly now and before he was off within a few hours of dialysis. At this point they would put him on prisma, a 24 hour dialysis (what Bella's on) but there is a list of problems that it will cause:
-he'll need a new line, and they can't move him to the OR
-an additional risk for infection, that his body couldn't handle right now
- it would pull his meds off him 24 hours a day and right now they are having a SERIOUSLY hard time keeping him medicated during dialysis, which is crucial for neurological reasons.
- (This one is more my problem) no BMT nurses. You have to uses nurses trained for the machine. Boooo!
Please pray that Daylon's blood pressure will behave and they can take off him what they need just using the intermittent dialysis.
Liver: Bilirubin level dropped all he way down to 1.6 (1.3 or lower is great)! We are shocked and so excited that the VOD is turning around! It typically lasts 1-2 months after transplant so the name of the game is to stay alive. If you can do that, you'll out last the VOD. He's over a month in, and it's time for things to turn in his favor. :) He gets a liver ultrasound tonight and we really hope it shows some improvement!
Stomach: The bleeding has officially stopped. Yay! His G-tube is back to being a gaping hole, but hey! We know it will heal!
Heart Rate: His heart rate is still really low when he's off dialysis, but the good news is that the brady episodes have ended!
Tomorrow both our BMT attending and fellow will be replaced and since the NICU attending and resident are new this week, I'm a bit nervous of the care he'll get over the next week or so. I'll have to be on my guard again...just when I started to relax! Oh, well. Such is life, right?

Some news in our lives outside of the hospital is pretty great! My mom had a horrible 19 hour plane ride here, but she's here! The kids are excited to play with grandma and life has become so much easier for us. I love my mom! Brian and I have been together for every mishap today. I love having my husband beside me. We can tag team the docs with what questions and he's great at making me laugh when I'm stressing out. Plus, no one hugs like my hubby! :0)

Yesterday we got a call from Best Buy and our computers back!!! Picture time!

Keira got to participate in the RMH Queen for day! They painted nails, decorated cupcakes, played games with beauty pageant princesses, and she even got to wear a real crown! Mommy threw up her hair in a "Queen Do" and she even got to wear some shinny lip gloss!

Brian at the EB dinner held by PUCK (Pioneering Unique Cures for KIDS) looking out at the view.

Violet got into my mascara when I hopped in the shower. "Look! I'm a pretty grown up!"

We went out to dinner when my mom flew in to celebrate and Caleb refused to eat off the "angry plate"! It had us crackin' up!

This beauty was in Sadie's nose and required a trip to the urgent care (we got the call about Daylon'a first seizure on the way there). It was waaaaay up there! Once again our family trip to Sam's Club was cut short. Once for Violet's head being cracked open and now for this lego adventure!...mind you, there's only been two family trips! Needless to say, the tiny legos are on the top shelf now!

The kiddos and our landlord, Ron

Photo therapy!!

Caleb's, Violet's, and Sadie's favorite dolls


Lacy said...

Your children are so beautiful! Keep your head up! Praying in NC

Stacey at Mommiverse said...

So glad to hear there's some good news for your family and sweet little man! Thoughts, warm wishes and positive vibes from Upstate New York!

Skye is the Limit! said...

well those eyebrows are just too cute. great way to throw some humor in the mix!!

Anonymous said...

It is great to hear some good news. Your children are beautiful I am happy your Mom is with you to help out. Daylon and your entire family is in my prayers.

Bella's Grandma Carolyn

Anonymous said...

My daughter had the same prep fr her transplant for a different condition. Your family is beatiful and in our prayers.
The Ursillo Family

Bella's Blessings said...

Yay! What a slew of great news! You've been saving it up, haven't you! Having moms in town ROCKS. Great to hear all the momentum in the Edling camp! Warms our hearts.

Mom to Many said...

Firstly, Oh my goodness blessings from above.
Secondly, I feel differently when I drive through the drive up at Md's. I see that slot where you can contribute and my hand feels looser with that change. What a blessing.


Aviles Family said...

oh my goodness isn't Caleb so handsome! And it is almost hard to tell Violet and Keira apart! Love the pictures!

Sara said...

Awesome news! Go Daylon !


That is so great to hear that the transplant worked!!!!!!!! I AM THRILLED for you!!!! YAY!! I am glad to hear all this good news after this weekend :)
I will be praying for his blood pressure!!!!! I hope he will not have to go on the prisma!!!
I love all the pics of the kids...... they are all so beautiful!! I bet they are LOVING having Gma around!!
Loving your positive energy and I like it when your happy..cause it makes me happy:)
Also love how you outlined this post.... with everything separately talked about. Thanks for letting us into your life :)

Anonymous said...

I'm so relieved to see improvement for your sweet Daylon!!!! Do you suppose the accelerated healing could be due to being sedated with less movement on his part? No matter, we'll take it!! WHOOT-WHOOT!!!

I'm continuing to pray you'll get to hold and cuddle your sweet boy soon!

Kim M
Waterford, Michigan

The McLaughlins said...

I am so thrilled that the transplant worked. And, that Caleb has SUPER CELLS that are taking over. I'll keep praying about the hematoma and that his kidneys and liver get stronger.

And, I love all the cute pics you posted. Your family is really beautiful.

Take care,

Amber McLaughlin, CA

Angelique said...

Caleb to the rescue! We're still waiting to hear about when they will do Bella's biopsies. We're day +27 today. Did they do blister tests on you guys yet? I remember Dr. Wagner saying the goal was to get a level close to that of the parents, since as carriers, we would blister faster than a non-EB carrier. Fascinating stuff! Keep up the good work Daylon! Bella's watching!