Day + 163 - Daylon update

Yesterday was Sadie's and Violet's 3rd Birthday and Daylon was sicker than a dog. He was vomiting ALL. DAY. LONG. Let's just say that the good hours of the day he puked 4 or 5 times. We did our family tradition breakfast of the candle in the donut and then got the kids ready for preschool. While Brian was gone walking the kids down to school, Daylon threw up (somehow) in his hair, so I decided to give him his first real bath since May...with the hope that it would be the first bath ever that he enjoyed.

 I don't know what I was thinking. Big mistake. He was fussy all morning and he was fussy in the bath. Not to mention, that once I got him in the tub I realized that it was impossible to wash his hair without getting his Hickman wet. I knew there was a reason he hadn't been in the tub. :) I held him while Brian washed his hair over the tub, then we did a dressing change, two line changes and dressed him all with intermittent vomiting. Total time? One hour! Not bad, if I do say so myself! :) We cuddled for about a half hour and he calmed down. I'll save you from the day blow-by-blow and just say that the entire day was changing him and trying to cuddle and soothe one very fussy boy... over and over again. Brian took the older four to go see Disney's "Tangled" for the girl's b-day and they had a blast, so the twins did enjoy their birthday.



Daylon showing off his first haircut (not counting the one chemo gave him)



  Today Brian took Daylon to dialysis, while the kids (ha!) and I packed. Holy smokes. It's amazing how much JUNK you can accumulate in 7 months! It took me the WHOLE DAY to pack up only about a quarter of our what? 400 or 500 sq feet?!


                

                                  Grandma, Papa and Grandma M&M singing "Happy Birthday" over the phone (Violet was sung to first and I didn't think to get the camera out. :(  )

Whole lot a junk and four little helpers who were suddenly very interested with whatever I put in the boxes. :) Brian called me at 2 this afternoon and said that Daylon was running a 101F temp, so he was admitted to the hospital following dialysis. He'll be in the hospital for a minimum of three days (that's the rule for a fever) and on Vanco (IV antibiotics). They sent his blood to be checked for infection, so we should hear back in the morning. There doesn't look to be an infection on his skin anywhere, so I don't think it's wound related. What ever this is, bug or infection, I pray it will end soon. Please continue to keep our little man in your prayers. Thanks for all your support!
Sweet dreams.

Someone randomly dropped off a b-day cake at the RMH and the office gave it us!

PS- The weather here is so crazy! The weatherman says it was the coldest day today since Feb. 1st. Minnesota received 6-13 inches of snow (depends where you are... Minneapolis was 7.2 inches) last night.

Day + 162...I think

Hey Everyone!
It's late and my eyelids are h-e-a-v-y, so I'll make this one short.
Daylon is doing pretty well. Remember how I said that Caleb was sick with the flu bug in the last post? Well, Daylon got it...we think. He's been so pukey the last two days. This poor kid can't keep even his medicine down, more or less fluid. He's also caught a cough, so not good. BMT isn't too worried about the vomiting (they were called directly to dialysis today when Daylon wouldn't stop vomiting and the Neuphrologist got concerned) because a bug's been going around the RMH house the last month (so we're told) and it's beating on the post BMT kids. I guess he'll be on TPN for a bit longer. His malnutrition is working in his favor right now! I don't know what we'd do if he wasn't on TPN already! :) 

Sorry they're blurry. He's a wiggle worm and I'm not a fan of the "flash"

  I know he's my kid, but I have to say it...Daylon amazes me. He will be so, so sick (the term "violently ill" comes to mind) and then the nausea calms down for a couple minutes and he's smiling and pointing and wanting to be cuddled.  He's really teaching me so much. I always felt like I was someone who "loved life", but Daylon knows the true meaning of the phrase. I'm so blessed to be his mommy. I have five wonderful kids who inspire me to be a better person. How lucky am I? Well, not lucky I guess, but blessed.  The twins turn three tomorrow and I've been doing a lot of contemplating today. Three years ago from right now, I was in labor 6 weeks prematurely and worried about what that might mean for the girls. Come to find out, being born at 34 weeks for twins is fairly common since the average uterus can only hold 11 lbs (see what you learn when you need to? LOL), but I was scared out of my mind. They had a rough first few days, but made progress each day and were out in about 3 weeks. It was an the type of experience that changes you, you know? It got me thinking about how merciful Heavenly Father is, and how if I had not experienced those three weeks beside Violet and Sadie, I don't know how I would have handled this BMT process...goodness!... even life raising Daylon! Isn't great that our darkest days and bring us light later in life! :)

 
Thank you for all your prayers! Let's pray this flu ends soon and he avoids another trip to the hospital.
   Happy Friday (officially)! Sweet dreams.

Keira's class made her a 'Build-A-Bear' puppy while she was out sick on a field trip. Sooo sweet, huh?

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!

Daylon's surgeries went great...no intubation AT ALL! woo-hoo! He's doing pretty good. Some pain, but still the toughest dino around! My phone won't let me type in text box, just in the title box. More tomorrow! Just wanted to check in so you all didn't worry! love, Jenn

Day +143 surgery--part one

Today was another crazy day. Here's the breakdown:
-this morning we waited around and were then told his surgery wouldn't be @ 7:30am and instead they would fit him in in the afternoon.
-we then went down to dialysis
-after we were there 20 mins., the Dr. called and said we need to come to the OR if he's going to have surgery today
-stuck in dialysis, they give us a time of 12:20pm tomorrow for surgery--not thrilled at this point
-got to the dialysis unit at 9am (keep this in mind) and clots clouded the machine.
-switch out lines, only to find out he has several clots in his central line.
-big opps moment-clots pushed into line and we watch for heart issues, meanwhile, I'm about to have heart issues
-at ONE O'CLOCK, Daylon is hooked up to the dialysis machine to start his 4 hour run
-it's decided that Daylon will also get a new Hickman and PIC line during surgery (Dr. Tolar is out of the country so he's being over ruled)-praying that the extra chance of infection won't come to anything
-Daylon's blood pressures climb to 170/100(due to infection from his tummy? Pain?) Again, I get heart palpitations :)
-dialysis ends at six o'clock and we emerge from the dark, no access to service, basement
Well, that brings us to now. Daylon's set up in his hospital bed and sleeping.Carin from Child and Family Life Services dropped off some toys and a mobile. He got to playing with them right away. It was nice to see him smile and play. He's been in a lot of pain today and it's always hard to not be able to pick him up and comfort him during dialysis. For being down there nine hours, he did great. He's such a sweetheart.
He has yet another corneal abrasion and his skin is starting to break down. It's typical transplant stuff...when there are so few cells (because it's so early after his transplant) and he gets a really large wound (ie:his belly), all the cells rush to the wound and the rest of his body suffers. He should still be able to heal quicker (benefit of transplant) and things will hopefully return to normal. I hope you all had a great day! Thank you for all your prayers! Sweet dreams.

Day +142- surgery news!

Yay! I have good news! Daylon has been put on the surgery schedule for 7:30am tomorrow!! I'm so happy to have this done with once and for all! Thanks to the antibiotic drips, Daylon's fever is gone. He's been fussy off and on most of the afternoon, but typically just before one of his pain meds is due.There's debate between the staff whether there's fatty tissue or puss coming out of some deeper parts of the sore. As of this morning, the cultures taken from the sore were still peneding...the lab is slow on the weekend. The biggest concern for tomorrow is intubating him.Last time he was intubated, they said that there was so much scar tissue that they couldn't fit the camera down and had to do a blind intubation. In the process, they injured his throat. While I know that tomorrows intubation will also be blind, I pray that no harm will be done.
On a whole other topic, can I just say how AMAZING you guys are. I've read the comments that throughout the day as they have come in and they've helped to lift my spirits so much! Thank you for that! I feel so much better today! :)
One last bit that I forgot to mention:it snowed on Friday night 5-6inches (depends on the weather person you listen to)! Crazy,huh?! Back home it's supposed to have been in the 80's...what a difference! The sun is setting now at 3:45-ish now too! Winter is coming!
I'll try to post tomorrow, even if it's quick, to let you all know how things went.sweet dreams

PS- sorry for another pictureless post. Still no computer, but I did figure out how to post on my phone! :)

day +141- back in the hospital

Today was emotionally draining and I'm ready for tomorrow. 7am this morning Daylon was screaming and blood was rolling down the side of his tummy while I changed his dressing. Brian couldn't even look at his belly and I was done. It was one of those moments where you either have to start bawling or start yelling, but some emotion is going to bust down your door? It was that moment. I called thw hospital, asked for the Pediatric Surgeon on call, and then told him (without losing it, I might add) that he WILL fix this giant hole TODAY. Yesterday he was in this guys office at 10am (yeah, no date hour :( )and they said he'll have surgery at some point next week. Today he told us to take him to the ER and he would look him over. Long story short:he didn't look at his bare skin, he refused to do the surgery this weekend (b/c the proper EB trained OR staff isn't all on) and he said he would try to squeeze him in sometime during the week. Oh! He also said that if I wasn't able to change the dressing for his whole stomach,then he could be admitted so the nurses could do it. :/ It was like he didn't get that this kid was covered from the neck down constantly until 2 or so months ago! Sorry. Guess I'm still mad. Anyway, I said that he needed to help him on Monday for sure then and he said he would try to fit him into his schedule Mon or Tues.if he were admitted,but he can't promise anything. I took the offer and emailed Dr. Tolar on the spot. I PRAY that he comes through for us and tries to throw his weight around to get it done asap. It's nice to see everyone on 5D. They're so wonderful. Everyone showers Daylon with attention and they're fuming right along with me. :)
Daylon had dialysis today also. I was lectured for most of it by 6 different dialysis staff about how he shouldn't be on IV drugs and how I'm ruining his line by meds through it. They poured on the annoyance like there's no tomorrow. I wanted to just say, "Are you joking? You're mad at me for giving him his meds?!" They refused to allow me to give him his CSA because "he can miss it" and his Keppra (seizure med)because "it can wait". I've been like a volcano all day and I think you all are paying for it with my vent. Sorry.
Anyway, Daylon is now also running a fever of 103.7 and his belly is so raw and eaten in parts that what looks to be his fat is starting to poke through in the areas where the most skin has melted away. Also found out that his bile PH level is one...so, pretty much pure acid.
The surgery will take about two hours and Daylon will be intubated and paralyzed for it. Please pray that everything will go well in surgery that he will be extubated immediately afterwards. I put on the "Pandora" website so Daylon can go to sleep. The songs haunt me. They're the same 20 or so songs that played for Daylon when I had it on when he was in the PICU. So many horrible memories are flooding my mind as I type. I think it's partly to blame for my fear and hysteria in this post. That and today while I was changing Daylon's dressings Caleb said:
Caleb-I'm gonna be sad when Sadie's and Violet's birthday comes (Dec. 3rd)
Me- Why?
Caleb-because that's when Christmas is coming and Daylon's going to die and we're going to go home.

We told him that Daylon would be fine and he was coming home with us. I know he's probably just confused because unfortunately,two of his closest friends here had their EB baby die and then they leave us and go back to California. He knows we're going home right before Christmas, so I think it's how he sees all this. I'm sad that my kids have had to experience so much pain in their short lives, with so many grown up thoughts and concerns. His words have weighed on me all day.
He has this surgery and then his brain surgery that I'm nervous about. His stomach is more than likely infected as well, which will be another challenge for him.
Thank you all for helping to carry us through our trials in prayers and friendship. It means the world to us.
Thank you to all of you who attended the blood drive today...whether it was in California or New York or somewhere in between, thank you. Sweet dreams.