Saturday, July 10, 2010

Day +16: Moving right along!

The past 36 hours have been a good 36 hours. The docs continue to be impressed with Daylon's determination to live. Yesterday, was Daylon's first 24 hours off of the GCSF (basically fertilizer for cells). They typically take the patient off on day +28, but since his cells are reproducing so quickly, they took him off on day +14. Yep, we'll take that as a compliment! We were told not to be surprised if his cells dropped in half over night and it's been two days with a 1.5 point drop. Today his cells are 9.4 (avg. person 6.0-17.5) and the Absolute Neutrophil is 7.4 (avg. person .8-7.7). His in really great, healthy ranges!His bilirubin is down to 1.4 (0.2-1.3 avg) showing that his liver is starting to work again and the defibrotide is working! So far no scary side effects! Woo-hoo! His Creatinine is up a smidgen from yesterday. It's at .68 (.15-.53 is avg), so his kidneys are still a bit sick, but much better from earlier this week. No one is even mentioning dialysis anymore, and I'm sure not going to bring it up. :) His breathing has gotten a bit worse over the past few days, but the ventilator is still in place and doing it's job, so he hasn't been too bothered by it. Not to be too gross, but it is INSANE what is suctioned out of this poor little guy! Every time we get a new RT they go on and on about how thick and how much drainage there is to clean up. What a job! I say it's just Daylon getting them back for all the junk they've put him through the last few weeks. Okay, I'll stop my maniacal laugh! :) Moving on! His weight is up...AGAIN. They added one more diuretic to the list. Lets hope this one works. He has had like 2 wet diapers today, so that something. They've started to use his new G/J-tube and are inserting his feeds directly into his intestines. He's up to 10 ml and hour! Woo! A whole third of an ounce! He would laugh at them if he could. In all seriousness though, it is good that he's able to handle it so far, because it's showing us that his intestines still know what to do with food.

The doctors have talked this week about starting to get him off the ventilator around day +21 (next Thursday), and with any luck, he'll be completely off towards the end of next weekend. We're so excited to play with our little man!









His IV stand is now packing medicine and machines on both front and back!






Fairview hospital "Bye, Daylon!"


I feel so guilty about this, but this morning we left Daylon with his nurse, and headed out for a family picnic. Brian has being dying to take me to this spot he and the kids came across on a hike a few weeks back and today seemed like the perfect day. We packed a picnic and headed out to the other side of the Mississippi River (the River is like 1/4 mi. away). Brian drove us through the cutest neighborhood! This place is so beautiful! The homes are these cottages with the cute shutters and porches like something out of a movie. There are greenest mature trees that hang over the streets like these little welcoming tunnels. I wish I had my camera because I would be posting these homes all over this blog! We hiked a little trail that lead up to a meadow filled with flowers. The meadow was up on a small cliff that over looked the river. I can't get over everything that Minnesota has to offer! I love the beauty of Minnesota!... I hate the giant bugs and the cold!...but I love Minnesota! PS- sorry about the camera phone picture quality!





The trail up to the meadow





lunchtime!!























race ya back!















16 comments:

Mom to Many said...

Today's entry makes me feel so hopeful. I am so happy that he is looking so good and his numbers are looking better.
I am so happy for you all and for him!
Thanks for the update.

:o)
Cheryl

Anonymous said...

He looks wonderful! His skin looks amazing.

jeanine said...

This is such great news! It's amazing what his little body is doing!

And I'm so glad that Brian convinced you to go on that picnic. It seems like the perfect outing!

Aviles Family said...

Me too! It's hard to know what to write when everyone before you echos what I was thinking. :) I'm glad you went out with your family, its so important. And I think the picture of you and Brian is really cute!
We pray for you everyday. The boys too. THey aren't sure what's going on, but they know to pray for 'baby Daylon'. Thanks for the updates!

Bella's Blessings said...

You guys look like the Von Trapp family running through that meadow! Seriously, you guys are SOOOO CUTE! Great news continues from room 3! We love it! Go Daylon!

Anonymous said...

My family and I have been hanging on every word -our daughter has JHEB. Thank you so much for your dilligient journaling. I feel like I know Daylon already; little sweetheart. You have a beautiful family and I think of you all often. Our Baby Elle, just had her feeding tube placed yesterday and is in the PICU with a lot of discomfort we can't quite locate, so we sedate. Hopefully she will join you and Daylon in Minnesota on the 4th if all goes OK. Keep well. Sincerely, Becky Pop (Elizabeth's Mama)

Alina_Hernandez said...

So happy to read this update! As hard as it is sometimes remember to stay positive! His skin does looks soo good! He is such a cutie!!! Can't wait to see another update with that BIG adorable smile on his face! =)

Stacey at Mommiverse said...

Glad to hear this update! Daylon is forever in my thoughts, as is your entire family!

ANewKindOfPerfect said...

It sounds like he is doing so great! I hope it continues on and on. It's hard not to feel guilty for leaving the hospital, but it was definately worth it for the other kids. They look like they are having so much fun! :)

BRIAN AND BROOKE said...

His skin is looking good! Loving all the numbers :) Hope his breathing gets better. Thats exciting he could be off the ventilator by next week ! I am so happy to for guys and all this great news!! Little man is pulling through till the end!! YAHOO!! Keep up the WONDERFUL work Daylon!
I am sure how torn you must of felt to leave the hospital and go have a picnic with your family. But no need to feel guilty he is in good hands till you are right back next to his bed side. Plus I am sure it was worth the smiles on your kids face when you all were having fun together!! I TOO am GUILTY for camera phones pics :) The pics looked wonderful though, what a Beautiful place!

Linda said...

Dear Jen: The pictures of your family did my heart good. They are beautiful and I am sure they were so happy to have Mommy & Daddy to themselves and enjoy a picnic. It looks like it was fun for everyone.
Prayers are still coming your way for precious Daylon. He really is something, isn't he!
Lots of love and prayers for your entire family. Take care! God Bless Love Leah's Nana

Sara said...

Here from Bella's blog :)

I know it must be hard for you (and the Ringgolds) to step away for a few hours, but I think it seems worth it in the end.
I am so amazed by everyone's strength....
Your children are simply beautiful...Hooray for all the good news!

Jenny said...

It's so amazing he's doing so great!! Go Daylon! Best wishes from Sweden, Jenny and little Natalie, 16 months with RDEB.

Mom to Many said...

Hoping you had a good day today.

Nancy said...

Yay!!! :)

Amanda & Roland said...

I have been so moved by your blog and praying for sweet baby Daylon. We are adopting a boy with EB this fall much less severe than Daylon but it breaks my heart that this disease is so terrible and painful. Our son has suffered alone without a family bc of this disease for 8 years. We are praying for healing and health for baby Daylon and your whole family!