Tuesday, July 13, 2010

Day +19: the ups and downs of BMT


First off, let me apologize for not posting in a few days. We had a problem with the Internet. I'm not sure if it was the hospital wifi or our computer, but today I just started pushing buttons and it magically started working! I would like to proclaim myself to be some sort of computer genius, but I have no clue what I pushed. So! Here's what you've missed:
The doctors around here have been the "Bad News Bears". Keep in mind, overall...big picture...he's doing good. Okay. His liver and kidney levels have been bouncing all around. As of today, his kidney level is down (good) and his liver is also at a 2 week low (good). The catch? The liver ultrasound showed that his blood is flowing backwards through his veins. This is a HUGE no-no for obvious reasons and shows that the VOD is worse this week than it was last week. His numbers all look good though, so it's a mystery. The only thing they can do for him is put him on the new experimental drug I mentioned last week (he's already on it) and wait. Prayers and time once again are the solution. The VOD is making him swell up with fluid. Like he doesn't have a belly button anymore, swollen. As far as his breathing, the X-rays show fluid in one of his lungs (once again from the VOD) and he's having a hard time. His ventilator is up, the oxygen is up, his heart rate is up. This evening we found out that the cuff on his breathing tube is leaking causing him to gurgle. It's awful. The tension was in the room and people gathered to guess what they can do. My son is not a guinea pig. I had one of those moments where I just wanted to yell, "ENOUGH!" and take my baby and run away. Those moments come frequently here, but they always go away. His skin has continued to blister from the weight gain. I'm not sure if someone moved him or what but two nights ago, I found the biggest blister he's ever had on his hand. We took out 12cc of fluid!! His poor palm is such a mess! I ran next door to grab Tim (Bella's dad) for hand dressings 101 (serious hand blistering/scarring is common in RDEB kids, whereas Daylon's has been relatively mild) and he wasn't there so I had to come up with my own concoction. I think I did alright, but we'll see in tonight's dressing change! Tonight Tim taught me a new trick called, "The Lasagna Technique". I'm excited to try it! I do have some more good news! His skin is healing faster! I thought I was going insane, but he is healing quickly. Scroll through the last several entries and check out his face! Amazing! It really gives us hope!
That's what's left of the sores from the sloppy job respiratory therapy did on the 4th

Other bits of excitement for the day: Brian picked me up so I could hangout with him and the kiddos this afternoon (before the chaos!) We had some fun in the sun! It was such a blast! I'm obsessed with the camera and my kids (if you haven't noticed!) and I got some cute shots of us playing. I refuse to be in my bathing suit for the world to see, so I'm the one behind the lens!

The kids [minus Daylon :( ] playing while Daddy looked for the sprinkler...







He found it!!










































































15 comments:

Bella's Blessings said...

Oh those pictures are just AMAZING! I love you, your family, and your camera! I had a moment like you today with respiratory where the gal just shook her head, apparently perplexed, and just walked out of the room! She did NOTHING. P.S. Bella has the EXACT same wounds behind her right ear from respiratory!!!! I got a bunch of scabs off with a nice aquaphor massage today, though, so they're on the home stretch. Hang in there, we are with you ALL THE WAY.

Denise said...

Just letting you know that I am praying for Daylon. I am so sorry it is so rough right now. Denise

Annalien said...

Continuing to pray for your little fighter!

Skye is the Limit! said...

Great fun this looked like!!
And he looks so good, as far as I can see...but of course I don't have much experience in this world. I love reading and keeping updated though!!
Love from mommy and skye!

sharon kaye said...

Jennifer, you are a great photographer. I loved the photos of your children playing. We continue to pray for Daylon everyday. Hang in there!!

Linda said...

Hi Jen: So sorry that you have to go through this. To see your baby like this must be so hard. Hang in there and remember your EB family is out here praying for your precious son.
You take the most awesome pictures. Your family is beautiful and you must be so proud. Hang in there, God Is Good. Love Leah's Nana

Jess Edling said...

I am loving the pictures of the kiddos playing in the sprinkler! I'm glad you guys are having some nice experiences admid all of this madness. Daylon will pull through. He has so many people praying for him! I'll call you later today - I think I have my dates in August worked out so I can fly out for a visit!

Fuji Mama said...

What beautiful pictures! Thank goodness for sprinklers! We like your theory that Caleb's super human powers have now been transferred to Daylon, so that's my theory for his skin healing faster right now. :) You guys are in our prayers.

jeanine said...

Ditto what my mom said... you are an awesome photographer! We keep praying for Daylon, you guys, and your docs. Love you.

Brooklynne. said...

i mist say Jen your becoming quite the photogpher. i spelled it wrong but u know what i mean. daylon will get better, it's just another speed bump in his path. hang in there, its gonna be better in the long run. im keeping my prayers up and doubling them up.

Anonymous said...

Love the pictures! Daylon is in my prayers.

Bella's Grandma Carolyn

Mom to Many said...

Thank you for the update. Sorry you've had issues with internet. I am glad that his numbers are doing pretty well.
I am so glad to see you striving to find some normal in the middle of this.
Darling sprinkler shots.
Hugs!

Sara said...

I bounce between Daylon and Bella...amazed at how you all have ended on the road less traveled. Together.
What a relief and blessing to have each other.

BRIAN AND BROOKE said...

Love all the pictures of dad and kiddos running in the sprinklers. Love all the happy faces! What a fun time :)

Man those respiratory therapy people!!!! Can they be a little more gentle...Geez..how mad you must of been!!

I hope Daylon's breathing gets better...glad you guys caught and found the leak. Blood flowing backwards? I hope that gets fixed soon....praying the new meds will work...minus any side effects. Poor little guy is swollen up. I am again so glad he is out sleeping for all of this! I am sorry they were poking and prying at Daylon ....your feeling what any mother would feel.
Hang in there, your doing such a great job being there for Daylon and protecting him! Daylon is so strong I have no doubt he will be able to pull through. Keep fighting Daylon. Your always in our prayers :)

Jenny, mother to Natalie with RDEB-HS said...

Lovley pics!!! Jenny in Sweden