Day +175- 36 hours after

 


Daylon and one of his favorite nurses, Ben

   To say the last 36 hours have been stressful would be an understatement. About 20 minutes after I last posted, Daylon threw up for the first of many, many times. By midnight, the night of his surgery he was inconsolable and crying in pain, itchy like I haven't seen him in months (EB is not only a painful disease, but a VERY itchy one), with blood pressure the highest I've seen it. He cried all night long. Pain meds didn't touch him, anti nausea meds didn't touch him, his high blood pressure meds didn't touch him. This continued all yesterday as well. Yesterday morning he started running a temp of 101.8F that Tylenol couldn't fix. The doctors changed out his high blood pressure medicine drip with a stronger med and are titrating it. He maxed out the highest dose on the titrate, so they upped that as well. High blood pressure could be caused by a number of different things, but when it's this high (and with his medical history) he is at a risk of a stroke. His latest blood pressure? 170/100. The fever is obviously the sign of an infection somewhere, but where? They've tested and cultured everything they can think of and the results are all the same...negative. His pain tolerance is one of the highest I've seen and he is showing signs of being in A LOT of pain. Why is that? The doctors said the pain should only be moderate.
  When he's not crying, he's moaning and flailing about. The PICU nurse and I took turns standing at his bedside during dialysis to hold him down and prevent him from loosing his run (and all the blood that was in the machine at the moment). It was a five hour run that lasted 7, but in the end they took off one whole kg. so that's good.
  He's breathing has become very rapid (like 60-80 breaths a minute). His nostrils are flaring and he's needing to breath using his belly instead of his chest.
 
If you add this pot of mess together what does it equal? One sick kid and a heard of stumped medical personnel.

They switched his meds all around every which way and he's currently on a drip of pain meds and a drip of nausea meds with bolus of medicine for his break through symptoms. Besides a slew of blood work, he's had a chest x-ray which came back crystal clear, a head CT which showed that there are no new hematomas, but there is still a bit of blood left in his head and a pocket of air has found its way inside his skull. That can contribute to some of the extra pain at least. Unfortunately, the CT came with a price. The foam pads they put in to keep your head in place hit the Burr holes and he's started to ooze and bleed from the site. :(

 This morning he had an ultrasound of his kidneys preformed to see if the vessels in his kidneys are narrowing or something. I was told by the technician that things looked okay from what she could make out, but that the radiologist can see more. We're waiting on those results.
   It was decided also to dialyze Daylon today to see if vomiting for weeks has lowered his dry weight. If his dry weight (the weight he should be) has been lowered, then they aren't pulling enough fluid off of him which can cause high blood pressure. To everyone's surprise, when Daylon was weighed a bit ago, he is up a full kg. in 15 hours. It's surprising because he didn't take in a kg of fluid.
  We're grasping at straws, but at least there are still straws to grasp at. :)

  Well, that's the update in a nutshell. I need to get back to Daylon. He's starting to wake up. Please keep the prayers coming!

Day +173- Part two

 Several of you commented that Daylon looked like Clark Kent with his new glasses. Well, it's time you knew...

He's SUPERMAN!

Hello Everyone!
Thank you all for your prayers, kind thoughts and comments. They've really helped Brian and I through today. Daylon has been in his room for only 20 minutes or so. I'm thrilled to report that the surgery went well. It was a long day and nothing happened on time or as quickly as I hoped but it's done!

not feeling too hot before surgery...but still willing to crack a smile!

 All three EB trained Anesthesiologist showed up for surgery and worked together to intubate Daylon. Literally. It was a sight to see. All three doctors crowded tightly around Daylon's head, glued to the camera. One had her hand on his throat to feel it go in, while the other two worked the camera. They put up no front and made it clear that they were nervous about the procedure. It's an unpleasant thing to watch your baby be intubated (especially with the gun camera in his mouth), but I can't even say how appreciative I was to watch these professionals provide the best possible care for Daylon by working together. Once he was all set up and the drill was out and ready to go, I headed for the door. An hour and a half later they called me back into the OR to help bandage the incisions. They drilled 3 nickle size holes in his head. Dr. Tolar said that has soon as the first hole was in and the drill removed, a gush of fluid came out. I'm glad I was in the lobby for that. I checked out the wound and got the low down of what happened during surgery and then Dr. Tolar took the reins. He set up biopsies and photography to take place while he was still unconscious. He told me that Daylon's skin is performing above average at this point post transplant. That was nice to hear.  I needed to hear something good. Extubation went well, but the whole process left Daylon really hoarse. He's gotta a husky voice to begin with, so this wasn't a shocker for me. Dr. Tolar said that the mystery sores in his mouth are not EB related. He's going to have them cultured because he believes they're the product of some sort of infection. One more thing to add to the pot. :) Until the drain comes out he can't be up higher than 3o degrees or be held. That will be a toughie for him. He LOVES to be held lately. As of right now, he's in a lot of pain obviously (three holes in the head and eight in the thigh might cause a bit of pain! :) ), but as always, he's a champ. He's the toughest little guy I know. I'm so grateful he's okay.

 Daylon is in the PICU for now and will stay here for 3 days or so (fingers crossed) and then he'll be moved back to 5D. All the doctors have said that things have gone so well today that we are still on tract for going back to CA on December 20th! I'm so excited. I PRAY that it all works out!! BMT is an emotional roller coaster like I've never been on before. When we got to Minnesota, my naive little mind thought that transplant would be really rough the first month, tough the first 100 days and challenging up to the first year. HA! :) While he was in 5C last time, I just kept thinking, "It's one hundred days. We can make that". After that Day +100, everyday has been a little bit of a drain. I know I shouldn't have, but I've put all my eggs in the 'going home for Christmas' basket. I'm emotionally tapped out. I have no clue how the BMT families from the past have done this. Living the BMT life for years? Wow. I have so much respect for them. I'm hoping that living life in the BMT fast lane (or slow lane, depending how you look at it) will get easier once we're back in Southern California with our extended family and the life we're used to. I'm so looking forward for the disaster of the day to be Keira's teacher calling at 10 am to ask me to bring 4 dozen cupcakes up to the school by noon. I used to hate those kind of days and now I love 'em. Go figure.
Enough rambling about me. We have one last bit of news to share....

This weekend Minnesota received the 5th largest blizzard in the state's history. Our city had a "Snow Emergency". Everything from restaurants, to stores  to snow plows were out of commission. Currently, 2/3 of Minnesota's average seasonal snowfall has been met. We had a negative 15 day on Sunday to boot. From what we've been told, this kind of cold is typically of late January-early February. Lucky us.

Our living room window...on the SECOND FLOOR!

 Seriously though, this was a really amazing storm. I hate driving in the snow to the point that I think my driving days here are over, but it was so crazy to see the snow fall sideways! I walked home from the hospital in it and it occurred to me for about the, uh, I dunno, fiftieth time that I could have never been a pioneer. My skin burned like it was on fire and I couldn't even see where I was or where I was going. R-I-D-I-C-U-L-O-U-S. 
 Warning: these pictures are really blurry and well, not the best. I hate the flash and it was freeeeeeeezing!



Outside the parking lot doors



There are the cars in the parking lot. Kind of. :)

It was fun to walk under this. I wasn't scared a bit. :p

Our landlord needs a place to stay apparently

RMH

The park across the street

This would be Keira, hip deep in snow

blizzard ends and it's time to trade off at the hospital.

  The kids thought the snow was great until they, one-by-one got stuck in the mounds of snow as big as they are. It's the kind of memories they won't soon forget. I love making memory wrinkles in their brains!
   Well, I'm ending here. I wanna post this before it gets any later. Thank you all again. You're amazing. We love you!

  Sweet dreams.

Day +173 - PLEASE PRAY

Hey all,
I'm sorry for my absence in blogging this week. Daylon is still in the hospital. He is still vomiting (although today there was marked improvement) and this week they discovered a staph infection in his blood through one of the PIC line ports. He had a head CT that revealed a significant increase in fluid in and around his brain. His most recent hematoma is apparently reeking havoc. He is scheduled to have brain surgery tomorrow morning sometime. They've been working on making sure everyone involved has learned about EB. Dr. Tolar will do his 6 month biopsies following the surgery and also get a biopsy of his tongue (some new questionable sores have popped up and no one knows what they are). To be completely honest, I'm a nervous wreck about the whole thing. They will be drilling a nickel size whole into his skull and have to cut into the vessels that broke and caused the brain bleeds. The amount of pressure (from the fluid) he has may be the source to his vomiting and high blood pressure (he's on 2 meds and one's a drip. They've been 140-160 over 80-100 with the meds. They've upped their game again tonight and it's helping). It's late and I'm rambling, but I just wanted to ask you all ( beg you all really), to pray for Daylon and the surgeons. This surgery also comes with the risk of infection and brain infection is not something you want to mess with. There are so many aspects to think of: the surgeons missing and hitting his brain, his skin not cooperating, infection, Daylon pulling the hose they are going to attach, re-damaging the brain, etc.
  We're so very thankful for all of your love and support. I PROMISE I will post something at some point tomorrow. We love you!
Love,
Jenn

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?