Tuesday, October 5, 2010

Today: Day +103

picture of cuteness
Where, oh where, to begin? First, let's go over Daylon's health and then we'll talk about Day +100.
 Yesterday was NOT a good day. Brian has this tone of voice that he uses when he's really angry or really scared. I woke up to that tone. "Jennifer, get up!!" I jumped up in bed and leaned into Daylon's crib (which is pushed against my side of the bed) instinctively. Sure enough, there was a problem. Daylon had ripped his G/J tube out ....COMPLETELY OUT....AGAIN...and laid there in his crib asleep and covered in blood and guts (mostly guts). Brian had gotten up and taken his shower and didn't turn on the light until he went back in to give Daylon his 6 am meds. Daylon has oral meds (given through the j portion of his tube) given every even hour with the only exception of 4am. Of course. That leaves 4 hours of no meds and that's when it gets ripped out. Between all the fluid and mucus oozing out of him for who knows how many hours (keep in mind this hole is HUGE!!) and the constant feeding pump he's hooked up to (which continued to pump milk down the tube and onto him), he was drenched and smelled like death. I quickly cleaned him up and applied pressure to the hole, while Brian called the BMT Fellow. She had us take him to the ER. It was Brian's day for dialysis, so he took Daylon to the ER while I stayed behind to get Keira ready for school. The doctors in the ER worked on Daylon for a while and then he went to the OR. It was Brian's first time being in the OR with Daylon since he was born, and he handled it like a trooper. Daylon stomach needs to have reparative (?) surgery, but the surgeon wants to wait a couple more weeks before he cuts him open to give Daylon a chance to grow a bit stronger. They ended up not needing to stitch him (LOVING that foam gel!) and the procedure went well. After he was out of recovery, he had to go to dialysis, where he went from 15.2kg (yikes) to 14.0 kg (yay!), then BMT clinic. His daily labs showed that his CSA levels were low again, so they upped his dose. I have to admit that's a little discouraging since we were expecting them to drop his level this appointment. His body is metabolizing the med too quickly. More CSA = more kidney issues. Ugh. Whatyagonnado? Since his levels are low, we should have seen his kidneys perking up...that will change though after Wednesday! :) They still feel that even though the biopsy shows no GVHD, that that is what it is. Apparently, it's really hard to spot GVHD on a biopsy. We stopped the Bactrim and today he'll receive a med given through a nebulizer that will act in it's place. He just gets it once a month in clinic! How easy is that!? Hopefully, it will make the rash go away. We'll see what happens. GVHD is the last thing this kid needs. I've never really explained what it is, but GVHD happens after transplant when the new graft (bone marrow) fights the body. It is potentially fatal, but the docs here are pros and can keep it at bay with steroids (which cause swelling and destroys the skin). For now, Daylon is on several steroid creams, 4 times a day. He has a lot of gagging and vomiting and diarrhea, which could be signs of GVHD, but also signs of a torn up stomach and BMT.

  His mouth is still a wreck. Thank you for all your insight. Several of you left really helpful comments. His lips aren't cracked from dialysis drying him out, so that helps things to look a bit better.
  The last couple days have been hard for me mentally, taking all this in. I know he's awake and a million times better than he was, but the realization of everything is starting to hit me. He's not the same. I can't sort through everything and tell what's the side effect of a crippling stroke and what's him just not feeling well. He can smile, you've seen it, but somedays he cracks one little smile for a split second and other days he'll smile for a minute or two once or twice a day. He used to smile at everything, and was just the happiest little guy. I was always amazed that he could smile and laugh, while having fleshy wounds covering his body.  We have to work so hard to get him excited for happy about something. He's so very serious. It breaks my heart to see his sad face. One of the things that's the hardest to handle, is that he doesn't always want to be touched. He was such a cuddly baby before transplant and we held him all day, but now when I go to hold him, it's really a 50/50 chance if he won't cry harder when I pick him up. My heart just sinks. I hate watching him suffer so much and not being able to do anything. If I knew for sure that it was all post BMT problems, I would be able to push right through this much easier. Not knowing if this is just how his personality will be from now on, is kind of depressing. Speaking of depressing, this rant is ending. :)
 So Daylon's Day +100 was Saturday. And it was "awesome" (I have this on very good authority, by a five year old who was there)! We started celebrating early on Friday afternoon after appointments. We back to Como Zoo to finish up our tour from earlier in the week, then to Como Park. Can I just say I LOVE FALL!?! It's so stinkin' beautiful up here! The kids loved running around and playing and I (of course) couldn't help but snag a few pictures. Fall just makes the world come alive, ya know. The air seems cleaner, people seem happier outside, I'm happier outside...it's like you just can't help being in love with your husband and kids. Since I've been a mother, I've noticed that "childhood" comes alive in my children during this time of year. How can you not love that?






Violet just woke up. This picture got me thinking...Christmas is coming! I need to get a picture for our card!

 On Saturday, Daylon only had dialysis, so we left at 2pm cutely dressed kids in tote, determined to get a picture for the Christmas card and even more determined for a fun day. We decided to go up to Taylor's Falls (north) to enjoy some Fall. It's an absolutely beautiful drive through bluffs (the closest I've seen to a mountain since May!) and quaint little towns with populations of less than 1,000. Lots of farms, lots of water, lots of trees, you get the picture. We checked out Taylor's Falls for a bit and then ended up crossing the state line and headed into Wisconsin. I don't even know what town we were in. It was breathtaking though. I always kind of shrugged off  Dialysis Dave's comments about Wisconsin's beauty, figuring he was biased since he lives there. Yeah, um, there's a reason he lives there. :)

















Not one turned out. Daylon wasn't having it and Sadie was way too interested in the twigs to look up. Oh, well. I guess we'll go on another adventure...if we have to :)
  We jumped, ran through, threw, dived, just played in general, with the leaves until dark. It was just quality Family Fun time like when we were back home. I've missed that so much. It keeps Crazy Mom away (she's my alter ego, sadly). We decided to enjoy Daylon's new public freedom...freedom may be too loose a word....allowance?...anyway, we went to eat at Baker's Square. That right. We were living it up in a coffee shop. It's okay to be jealous! :) They were super helpful and seated us in a far off corner of a restaurant. We had a really great time and the kids behaved perfectly. I know, I'm still in shock. Restaurants bring out the beast in children. Anyway, when we got home, we all ready stories and snuggled (even Daylon was in for story time!) and then sent the kids off to bed. It wasn't a big party or anything, but it was the type of day you don't forget.
  I can't believe it's been over 100 days. You all are amazing. Thank you for sticking it out with us. We love you. Sweet dreams daydreams. :)

17 comments:

Mom to Many said...

Jen,

I am so sorry that your heart is aching over so many worries. ((hugs))
I am glad to see you go and do things with your family. As they say, It was the best of times, it was the worst of times...

I am so glad I noticed your update. :o)
Hang in there.

Bobbinog said...

Hey there,

I just read your new post, as us onco moms would say....Chin up. He is a tough kid and has been through a lot...more than most people face in a lifetime!!! Take it day by day and deal with issues as they are presented and always be positive. He has fought so hard to be where he is now, he will continue the fight until he succeeds. He is really doing very well considering where he was and where he is now in treatment. Just give him time and support and you will have his personality understood. I dont think he will be who he was as he has been through so much since then, but his new personality will come, maybe when he knows what personality that is. Time will sort it all out. Just love and support him and he will blossom into the stunning little boy he has always been, but with added value due to his journey. He is really a brave little boy going through everything he has been through and is still going through and then still able to smile and laugh on his good days. Before you know it the bad days will be good days too. Hang in there and give him time. I have grown quite attached to him and I am on the other side of the world in South Africa. Well done Daylon...Give him a big hug from me please, Thanks

Tania

Denise said...

100 days! WOW. I cant believe it has been that long. It feels like just yesterday Daylon started this process and then he was in the thick of it. I still pray for him daily.

Daylon- Hang in there peanut! I hope you feel better soon so you can give your mommy lots more smiles. They really so melt a mommy's heart. Sending you love! xoxox

I love WI too. ;)

Denise WI

Emily said...

I was telling your story to a coworker today, and as she asked me several questions that I could answer, I realized I've learned quite a lot from reading your blog. You are so brave to be pioneers in this medical procedure, willing to risk Daylon's health to save him. My favorite part of your story is how Daylon has always exceeded the doctor's wildest expectations. Even when the doctors gave him a DNR, you knew, he's your miracle child, and he'd pull through. And now he's outside enjoying a gorgeous fall day with his family =). (by the way, I'm incredibly jealous about the fall colors, living in south florida I don't get much change of seasons, and I miss them!) I'm guessing here, clearly, but I think the changes in Daylon's personality, mostly the lack of smiles and increased crying, these days is not going to be his new personality, but rather it's part of the BMT and recovery process. You and the doctors are going to help his body continue to heal, and hopefully avoid future trauma like ripping out the g/j tube!, and then the smiles are going to return. =) He's also going to have to keep working to regain control over his body and eventually mobility, and since he used to have these things, this could also account for temporary changes in personality. He's bummed out he can't do the things he used to do.. but I know your smiling, happy, boy is going to come back to you!! I also know this will take more than another 100 days.. but progress will come, small and steady. Hang in there. You have a huge support group, and Daylon fan club, out here cheering for you!!

Aviles Family said...

Wow. Lots of things have happened. After reading about your day with the G tube...all I noticed in the pictures were the lack of bandages on Daylon. His skin looks fantastic! I agree with what the other people have said that his personality now isn't going to be permanent. He just doesn't feel well right now. He will come back to you. :) Minnesota and Wisconsin are beautiful states! It's funny how us Californians seem to think the only beautiful place is California. There are so many beautiful places in this world. I am glad you get to enjoy one of them. How nice to be out with your family too.
I think that when your life calms down and you get more "spare" time, you need to become a photographer. You really do take amazing pictures. You are an amazing family! We will be praying for you tomorrow.
Memory =)

Lisa said...

Dear Edling Family,,

I don't know you but I know another family who told me about your blog and BMT experience. I have to admit that I have been checking in almost daily since July to see how little Daylon is doing including all the ups and downs that you have ridden. Thank you for telling the world about EB and going through an extraordinary BMT experience. Thank you for sharing a glimpse into the tender and painful moments that have become a part of your day. You have demonstrated amazing faith, hope, optimism in the face of despair, and cheerfulness. You have told an amazing story. Your children are adorable. Your photography is superb. And even though I don't know you I hope that someday I will have the honor of meeting you in person somehow someplace and somewhere. Your little guy Daylon has touched my life more than you will ever know. I pray for him and your family everyday. I hope that Daylon's little kidney's will recover so that he can get past that hurdle without having to make more difficult decisions. God bless you all.

sharon kaye said...

My "mother's heart" aches for you. It is so hard to see our children suffer. Daylon has such a strong spirit and is such a special boy or he could not have gone through so much in his short life. I know he is receiving heavenly help to make it through all that he is facing. Hang in there. Things will continue to improve.
I love the photos of the autumn leaves. They are beautiful--except when the are in my yard and I have to spend hours raking them up.
I'm so glad you are able to spend time together as a family. You are creating cherished memories.
Hugs to you all.
We pray every day for Daylon's kidneys. Tomorrow there will be tremendous power in united prayer. Miracles happen!!!

The McLaughlins said...

Jen and Brian,
I am sorry to hear about how hard the last few days have been for Daylon and your family. I can't imagine. You both are such wonderful parents and you are doing what is BEST for Daylon. The Lord has promised that he wouldn't give us anything that we cannot handle. So that not only means that you guys will get thru this, but that Daylon will as well. He is such a strong boy. He inspires so many people with his strength and determination. I am praying everyday for a miracle. I ask God to heal him and make it so that he can live comfortably and happy. He's come so far. I can only imagine how your heart is breaking not knowing if his current attitude will change back to old Daylon or not. I am praying that it is only temporary and he will get back to his.old self again. Well, his old attitude anyway. :0) stay strong.

Lots of Love,
Amber McLaughlin,CA

Anonymous said...

Jennifer and Brian,

Thank you for being so strong in your fight for your son. Your son's progress gives us such hope for Elle. Thanks for always being there for us when we have questions. You are an amazing family !!!! Keep up the great work and great things are just ahead. I know Brian and I were discussing last night about your journey and how far you have come. What a miracle ! Your love and everyones prayers for this boy is changing the world. From Elle's Dad Steve

Anonymous said...

Many best wishes to Daylon to keep on recovering and not to scare his parents as with the j-tube. It must be very strange for him to have to cope with the changes in his life - dialysis, swelling, many meds and so on. No wonder he is not happy or cuddly.I hope he doesn't have GVHD and will need no more steroids.
Jen, may I say that you are a very good photographer and your pictures made me Aahh! and Oooh!

Anonymous said...

His skin what we can see looks wonderful!

Rhonda in NC said...

I found your blog from Patrice's and have been following your family for a while now but never commented. You have a beautiful family. Like to see more pics of Mom though. Of course, we mothers are usually the ones to take the pictures, aren't we. I agree with the other comments so I won't repeat it...I will just say that even though Daylon's future is very uncertain I do believe from reading your blog that you and your family will have the strength to face it. Thank you for sharing 'the good, the bad, and the ugly' with the virtual world. I've come to love Daylon, too...I know that sounds strange coming from a stranger...but, let's face it - He is one adorable kid! I'm a Mom and a grandma and believe me when I say that my maternal instincts really kick in when I read about ALL the children with EB. Sending you positive thoughts and best wishes today (and a virtual kiss for precious Daylon)

CrsLeigh said...

Your family and Daylon remind me that with the Lord, all things are possible. All of his medical challenges aside, I just wanted to let you know that some of the "smiling one day" and then "working really hard to get him excited" might just be normal growing up! My daughter was born just one week after Daylon and that describes her day to day right now to a "T". Between the teething and growth spurts, some days she's just cranky or indifferent to everything. I can't imagine being in your shoes and having to watch your child go through so much and I pray for you often. We will be prayig for you today as well. God Bless you all!

theartfulgardener said...

What beautiful pictures of your family! I'll be praying for Daylon, extra special prayers, tonight. It is so nice to see your kids enjoying the fall and to see Daylon outside. Thinking of you guys and sending lots of special intentions and warm wishes your way through the coming days...
Laura V.
Germany

Jamie said...

Thank you, this was awesome to see. You guys are in our prayers \o/

Courtney Roth said...

Oh my heart is literally breaking for my Daylon. How horrible, horrible this disease is to our boys. I still cannot imagine what you are going through. I know you want to scream, " when is this going to END?" I love you, girl. And you are ONE AMAZING MOMMA!

and O MY- those pictures are GORGEOUS!!! What a beautiful family.. but I have to say, you need to make Brian get a few shots with YOU:) Poor mama never gets to be in the pictures :) ha.

BRIAN AND BROOKE said...

I agree you can only take it day by day!! Daylon is one tough cookie!! Hang in there and when your feeling down think of all the thinks you have in your life to be grateful for and all the blessing you have received (this is what I do) .... it helps A LOT! (for me at least)
I will continue to keep praying for Daylon, and I hope he doesnt pull out his G tube again!! I cant imagine how it all looked when you turned on the light! Stay strong Jennifer, we are here for you!

Love all the beautiful pictures of your kids and the scenery! What a beautiful place! Getting x mas pics is hard for any family :) Try try again ;)