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. :)