Day +158- Hello out there!

 
Oh my goodness! It's been a while now and things have been crazy! We just got our computer back! It's been over a month since we've had a working computer...Toshiba took their sweet time, huh? I hope I didn't worry anyone too much. My phone has decided not to let me on the Internet either, so I've been out of touch with reality. Let's bring you all up to speed....

Caleb loves Aaron and Jackie!

   I wasn't able to write much in the last entry because my phone was acting up and I could only write in the "Title" line. Daylon had surgery on his belly and had a PIC line placed in his right arm. He only lost about 30ml of blood, which is a first and a huge plus. :) They kind of did a tummy tuck technique on his belly: They cut out the really bad area of skin and widened the opening, sewed each layer (IE: stomach, muscle, fat) and then pulled the two ends together and sewed the skin closed. We are SO, SO, SO thankful that the stitches have stayed in! The incision is only two inches or so, but it's a good portion of his belly. Typically, the surgeons are pulling the stitches out as they put them in. It's taken a few procedures, but they're getting down a new way to keep them in....not to mention, the transplant is working. A CT scan of his brain was done on Wednesday which showed two things:

1. The fluid on the left side of his brain has decreased significantly...more than anyone would have thought, actually! Yay! The hemorrhage on the left was down graded from quote, "as big as you can get" to medium or mild! :) 
2. The right side of his brain has a new hemorrhage with fresh blood. :( Who even knows how it happened. They said that Daylon could have thrashed his head, moved too quickly, anything. We have to continue to be diligent in making sure he doesn't move his head to quickly or heaven forbid, fall.

 So, what does this mean? Well, for now, surgery has been put off. He isn't a candidate for a shunt anymore because the fluid isn't re-accumulating. Next week he'll have another head CT to see if there's less fluid on the left and how much fluid has been created from the new head bleed on the right. If there's no improvement or if there's more fluid, then they'll drill into his skull to release the fluid. As soon as the fluid is absorbed or is released, then his head should quit growing and begin to fit is brain again, reducing the chance of head bleeds, stroke and or brain damage.
   From all of the open skin, he developed a staph infection that covered his abdomen. Between that and needing to wait to have all of his meds transferred from IV to oral, he was in the hospital until Saturday night. Back at home, trouble was brewing at the same time. Keira's croup started acting up the day Daylon was admitted. Sadie started having Croup issues, a few days later. Apparently, Croup is highly contagious and can be devastating to immune suppressed kids, so the doctor had Brian and the kids stay locked up in our room and Daylon and I were sent to a hotel.

he's in there somewhere!

  We got to the hotel on Saturday night and Daylon and I hung out and played and were bored together. The TV had every news channel you could want (or not want in my case) and local channels. Slim pickins. It was nice to bond with Daylon, just the two of us, in a comfy setting. He smiled a lot and we did a lot of physical therapy and practiced drinking from a bottle. By Monday he was up to three whole ounces!! Pretty impressive!
  During Saturday's dialysis the nurse held down his hand to keep the pulse oximeter on and it blistered up his hand. I was so upset! I lanced almost 10 blisters on his hand and wrist and it left his whole hand open. On Monday at dialysis, his finger had blisters all over them. Life with EB for Daylon means that once an area gets a blister, the surrounding area breaks down over the next several days. I feel like it's a race between EB and I over the condition of Daylon's skin. Anyway, I didn't think much of it until  he had both hands side by side. His right hand was red and his fingers were almost double the size of his left. After dialysis, he had an ultrasound of his arm where they found a blood clot from a location that the doctor attempted to put the PIC line in at and his Hickman line and PIC line were sharing a vein and blocked blood flow where they met up. Soooooo, back in the hospital we go. PIC line was pulled Monday night, new line put in Tuesday afternoon and we decided to throw in a tongue surgery too. For those of you who have followed the blog since July, this will be a repeat for you, sorry. On the forth of July, while Daylon was intubated, the respiratory therapist suctioned Daylon's mouth with a neosucker and pulled a several layers of skin off his tongue when it made contact. I will never forget watching his heart rate soar and tears stream from his sleeping eyes as he lay there paralyzed from meds and trapped in his body. From that incident, a large growth of scar tissue formed on the side of his tongue, which peaks out from his closed mouth. Now that his one year molars have broken in, he's biting on it and the area keeps bleeding. Anyway, we had the ENT come in and remove it while he was under. He received several new blood blisters in his mouth from the tool used to keep his mouth open, but the growth is gone! Woo-hoo! With any luck, this will help him to want to eat.

Viking players came for a visit!

  On the home front, Brian took the girls to the doctor's on Wednesday (typically with Croup, it last a couple nights and goes away, so we don't take them unless it's bad to get steroids) and Keira was diagnosed with Asthma...although, I'm not sure I'm convinced. I think Violet is catching her "Asthma". :)
  Daylon was released from the hospital Thanksgiving day, which was one of the things we are thankful for. We were able to be together as a family for the first time in two weeks!! It felt like an eternity! It was so hard not to see my hubby and kiddos for so long. They were really sweet and snuck into our hotel room on Monday and put up a homemade "We miss you" sign and pictures the kids drew for Daylon and I.

 Unfortunately, a few hours after they decorated the room, I called and asked that he go to the hotel and get all of our stuff and close out the account, since Daylon was being admitted! :( Can you believe it!? Brian sent me a text of what the room looked like, so at least I got to see what it looked like! LOL!

  We've spent the weekend in our room, trying to stay out of the cold, enjoying the Christmas season and trying to keep the kids healthy....not sure if it's working though. Caleb seems to have a stomach bug now. Ugh.

NEW GLASSES!

  Daylon is sitting up now for maybe 20 minutes before he tires out, leaving his PT goal of 6 minutes by Christmas in the dust! He loves to play in his activity center several times a day and doesn't complain at all about having to put weight through his legs. He says "Mama" or "Mom" for me, "Dada" or "Dad" for Brian, "up" and  "uh-oh!" this week. Each week his vocabulary comes and goes. Last week he was saying "Gotchya!" but I haven't heard it in days. While he was in the hospital several doctors asked if anyone had talked to us about his lack of talking. He RARELY babbles, which I'm told is a tell-tell sign that's something's off. He is picking up American Sign Language a bit. He signs "Mom", "Dad" and "up" which of course are words he can already say! LOL! Silly kid! He understands a bunch though. He responds to and or tries to sign, "sing songs", "cute boy", "toy", "drink", "Daylon", "stories", "kisses", "I love you"and "Mickey Mouse". He can also point to his eyes and nose when asked. Regardless of what the neurologist thinks, I think he's doing okay for a kid his age that was unconscious for two months and has under gone everything he has. We're just taking it all one day at a time.

  Okay. Sorry. I know this was a lot to spill on you all at once! We're doing good and taking everything one day at a time. Thanks for all of your love, support and concern. We love you!

These two are such cute buddies!!

at Elle's memorial: our kids and Chloe

I walked in on these two cuddling with a book and I had to snap a shot!