Whirlwind

The past several days have been a roller coaster of types. At Daylon's eye doctor appointment we learned that he has a astigmatism and is far sighted. They are going to hold off on glasses for a bit though. The nasal swab from last Friday came back positive for para influenza. The Infectious disease doctor said he looked fine and requested a second swab...which also turned out positive. So, the chemo was pushed back a week more.
Daylon has started cutting his one year old molars. Teething and EB is a bad combo. On Wed. Daylon just wasn't his happy self and by Thurs. a low grade temp kicked in and he was super fussy. On Thursday afternoon, Daylon was crying and suddenly his cry turned into a high pitched scream sort of cry. Blood started to drain out of his mouth. For Daylon, when teeth come so do the blisters on his gums at the sight. I suppose the veins must be really close to the gums because the blisters are blood filled. This has happened before and is a normal sign of his teething symptoms, but it makes me feel helpless and completely overwhelmed...if even for a moment. I can't describe the feeling of seeing your sweet baby suffer so much and know that you can't make it better.
After his evening nap, his 99 degree temp was 102, so I gave him tylenol and off to the ER we went. I had hoped it was just the para influenza he had tested positive for. While we waited for the blood work to come back, Daylon started to have a seizure. It seemed to last for an eternity but it was only about 10 minutes. The Doctor and Nurse were there to evaluate him the whole time, so that was nice. When they took his temp it was 104, so the spike probably did it. After he rallied, we were sent home. The next morning we got a call finding out that he had a blood infection in both of his central lines. He was admitted by noon on Friday. We have since found that the bacteria more than likely came from his stomach, Kaleb-something or other. My guess is that the stomach content from the drippy G-tube is the culprit. The central line dangles on the G-tube. Today, the Attending came in and said that he also has a yeast infection and staff infection in his blood. The rash on his body is also yeast related. The antibiotics he's on should heal him. This morning his hemoglobin levels came back at 7, so he also got a blood transfusion. They said EB kinds tend to be on the lower side and since he's sick, he's not replacing the blood they've been taking fast enough. It should be fine in a few days. Thank goodness for modern technology!
We've also been really blessed this week. Yesterday we got a bigger room at the Ronald McDonald house! WOo-hoo! Also, the FDA is allowing Dr. Wagner to separate the EB kids into two groups: Junctional and RDEB. He can now do one transplant of each type a month instead of one EB kid a month. Daylon's delay will not affect Bella (the June EB kid) or the rest of the kids on the schedule since they're RDEB! We were really feeling guilty about it, so that's a sigh of relief!
That's the update from Minnesota! Hope things are great where you are!

Nickolodeon Universe

We had such a blast Saturday at Nickelodeon Universe! The Ronald McDonald House has free unlimited use wristbands for their guests, so we decided to take the kids. It would be our last hurrah as a family before Daylon starts chemo and we become completely sheltered for the next year. Plus, why not!?! It's free!The theme park is in the Mall of America on the ground floor and the other four floors above it are opened up to make room for the roller coasters, etc. with a skylight as a ceiling way up top. The kids loved it!

There weren"t too many things that an EB kid could do, but we were able to find a few rides Daylon could play on! The kids played on race cars, rode the big swings, played in Lego town, flew on the back of Blue (Blues Clues), even rode the Fairly Odd Parents roller coaster but our favorite was the "butterfly exhibit". We all got a kick out of being in a tent with hundreds of "friendly" butterflies. Sometimes pictures speak louder than words, so we'll let them do the talking!

It's on her hip

Fun stuff, right?! Have a great night!

crazy days

Hey all!

Things in Minnesota have been crazier than ever. As I sit here and write, I'm listening to an unexpected thunder storm and wondering if Daylon and Brian are getting wet on there walk back from the clinic. If so...BANDAGE TIME...again! Ugh! Anyway, the past few days have been crammed full of appointments.

Thursday, we did more labs which were painless thanks to the central line. We worked with the nurse coordinator and the Dr. since the inevitable happened...Daylon got the kids bug. The Dr. put him on a nebulizer to help with his raspy breathing. So far, it's been working really well. At the same time I had Daylon seeing the BMT Dr., Brian had the other four kids at the urgent care where Sadie was put on a nebulizer as well. She too is doing better. The kids have enjoyed playing "Doctor" (wearing their Mickey masks) when we have to pass through the common areas.

Anyway, after the Dr. visit, we went to an Apheresis consult. On the off chance that Daylon's body fights off Caleb's bone marrow, they will harvest Daylon's blood cells (before chemo) and put them back into his body so as not to leave his bone marrow empty. That consultation was REALLY long and boring and my lack of sleep caught up with me. Yes, you guessed it. I kept dozing during it!! It was like some sort of scene in a movie. Just me and Daylon and the Dr. in a cubicle and I'm losing my balance and nearly slipping off the chair during snoozes. :) After that catastrophe, Daylon got a CT, with no sedation I might add! Next was a echocardiogram and we were done. The Child Life people here are great. Child Life is a program are people who focus on making the young patients comfortable and worry about their psychological well-being. They are on the family's side through everything. Plus it's great because if something scary is going to happen to Daylon, they're there blowing bubbles, playing with lighted toys, etc. Several days he's gotten to bring home toys or balloons. Thursday was Superhero day at the hospital and they celebrated the hero that each little patient is.

On Friday Daylon underwent a test called a GFR. Basically, they inject him with something and test his blood 2 hours later and then in 45 minutes intervals for several hours to see how his kidneys are processing the injection. Caleb had his labs drawn, a chest X-ray and a physical. That we know of, everything looks good. We're looking forward to a relaxing weekend with only 15 min. visits a day to the BMT clinic (to flush the central line). Hope everyone is having an enjoyable weekend!

central line

Well, today is finally over! Daylon is still adjusting to the time difference and didn't go to bed last night until 1am. I woke up at 3:45am to get us ready for the day. We had to arrive at the hospital at 5:30 am and the surgery was scheduled for 7:30am. The Surgeon placed the central line (no blisters or broken down skin as of yet! Yah!) and examined his g-tube. He said that what he would like to do this week is fill in the hole with a foamy-gel type substance that should help healing time. As of now there is no infection (thank goodness), but he wants to push back the BMT a couple of weeks so as not to risk his well being once the chemo starts. As for the central line, it can't be anchored to his skin so we have to be super careful that it doesn't get pulled out. Honestly, it's a bit nerve racking. So far we're good though! While he was still in the O.R. they came and brought me back. Dr. Tollar (he and Dr. Wagner are the brains behind the trial)and I removed his dressings and a photographer photographed his skin and the procedure. Three dermatologists got right to work, taking 8 skin biopsies (which will be compared to skin biopsies taken in the future to see how is body is actually reacting to the BMT) and performing a blister test. The take a machine the lightly sucks on the skin to form tiny 1mm blisters. For the average person, this should take about 60 minutes. The past EB patients blister anywhere from 5-12 minutes. Daylon was at 5 minutes and 18 seconds. The doctor says that he's right where they expect him to be, so that's good. Anyway, they will also perform the blister test on Caleb when the harvest the bone marrow, and on Brian and I. They expect Brian and I to blister in about 30 minutes. Even though we don't have EB, we carry the gene, therefore, our skin is weaker. The goal is to see Daylon skin blister around our time frame in the future. For the EB parents reading and preparing for BMT, Daylon didn't seem to even notice the blisters. The pain seems minimal, so no worries! Oh, bring lots of Mepitac! Not all Dr.'s here no what it is, more or less carry it.

They let me bandage him while he was still under sedation, so that was wonderful! It was my first time bandaging him alone since he was about 4 months old. He's such a strong little fighter!

Our day was full, but good. It's hard to see yet another object protruding from his small body, but it's important for us to think of the long term goals and keep moving forward. Thank you all for being our support system! We love you!

work up

Daylon had another busy day at the hospital. For about 6 hours each day, for apprx. 5 days, we go to the hospital for a series of appointments and tests. Yesterday, we met with a nurse for a history, they drew 13 vials of blood, we attempted an EKG (the tabs were too sticky, so I'm trying to figure out a way we can attach the leads without adhesive), he had a chest X-ray, and I had an appointment with a wound specialist and learned how to properly care for a central line. Today both Caleb and Daylon had appointments, but unfortunately Caleb came down with the flu bug Sadie has. Actually, it's been quiet the epidemic over here. Violet and Daylon are the only ones to not get sick...although, Violet does have the nasty cough. Our Sickies are room bound until the flu leaves. Anyway, Caleb's appointment has been postponed until Friday we think. The schedule is really up in the air. Today we met with a dietitian (who put Daylon on vitamins), our scheduling nurse, Kim (who resembles Monica Potter)and Dr. Miller ( a fellow for Dr. Wagner) and we went over the medicines and their dangers, and a surgeon who will be putting in the central line tomorrow. The surgeon also looked at his G-tube and said that it is leaking too much. The hole for the G-tube is HUGE! Way bigger than the G-tube. He said they probably put in stitches, which he says, really don't work on EB kids because their skin tears and the stitches fall out. The hole will have to stay because the risk of sewing two exposed sides together puts Daylon at risk for secondary infections. He's hoping it will close in 10 days or so. His chemo is tentatively scheduled to start on the 25th, but the hole closing may change that. Tommorow our big thing is surgery for the central line...at 5:30am! :)
Everyone here at the hospital and the Ronald McDonald house are so amazing. So many kind, loving people. We really feel like we're in good hands. Thanks for all the prayers! We are so blessed!

WE MADE IT!!

So, we're here in beautiful Minneapolis. Despite our efforts to get here as quickly as possible and splurging on 6 non-stop tickets, our day of chaotic traveling lasted for 12 hours. We were in for a treat when a limo picked us up at my parents house in Corona at 11:30 am. The kids LOVED the ride to LAX and thought that drinking apple juice from cups in a car was the coolest thing. They each even got a balloon to beat each other with! :) We checked our luggage curbside, which was a huge blessing and the sweet guys at Delta even helped us in to check our 5 carseats. Airport security was the biggest adventure. Taking Daylon through is always a thrill because they don't allow babies wrapped in blankets to go through their metal detectors, tubs of aquaphor, and they want to know that his sores and red skin won't cause some fatal outbreak. Throw in 4 barefoot kids (they scan your shoes...thank you terrorist) who enjoy the sport of running, 2 strollers that won't fit in the conveyor belt detector and all the normal pandemonium of security checks (ie:emptying pockets, separating electronics, removing medicine, baby food and formula from bags) and you got yourself a party! Our flight was delayed for several hours so the kids were more than ready to be on the plane when we boarded. Since it was the four older kids' first flight they loved looking out the window and really enjoyed take off. The first hour was really great. Boredom hit the second hour, and irritation the third. Surprisingly, Daylon was one of the best behaved. He really had no troubles. Keira was an angel, and Caleb, Violet and Sadie were, well, spirited. For extra fun, Sadie decided to throw up 30 mins before we landed. Anyway, we eventually got to the Ronald Mc Donald house at 1:30am. It was a long day but we did it and we didn't even loose a kid. :)

Mickey Button g-tube

Daylon had his surgery at CHOC last Friday and everything went REALLY well. CHOC has really upped their EB game thanks to our wonderful nurse, Tanya Kamka (we met her last November when Daylon was in for an infection) and Dr. Grant (his GI Dr.). We came in a day before so everyone could prep for the surgery (ie: meet Daylon, go over what his limits are, etc.) We were so lucky that he didn't blister at all on the site. He was released Sat. afternoon. His Gtube/Mickey Button has always been a little oozie but on Wed. night when I sat him up his opening started to drip. We went back to the hospital today and they repaired the ring balloon (It keeps the Mickey Button from popping out of his stomach). We're glad to report he's doing much better now.

We leave for Minneapolis on Sat. and Daylon starts his work up on Monday the 17th. He'll have tests and appointments for apprx. 6 hours a day for 5 days. Caleb will have his lab work and EKG on the 18th.

Our next big task will be flying with 5 children, ages 5 and under, 12 pieces of luggage, 4 carseats and two strollers. Ha, Ha! I'm laughing already! We're going to be that family...I just know it! We'll keep you posted!

We're heading to the hospital right now. Daylon is getting a G-tube put in at 7:30 tomorrow morning. Wish us luck.

Brian and Jenn

Thank You!

We wanted to start a blog detailing Daylon's journey with EB and his upcoming Bone Marrow transplant at the University of Minnesota so all of our family and friends can be updated on his condition and this is it! Welcome! We'll post every few days as things happen.
Before we get to Daylon, Brian and I wanted to thank everyone so very much for all that has been done for our family the last 9 months. When Daylon was first diagnosed cards, meals, fluffy blankets, money and prayers were given to our family by so many of our family and friends. We have had the support and prayers needed to care for a baby with EB and still live a sane life. As dramatic as it may sound, we would not have been able to make it through all this without knowing we had people who loved our family standing behind us. Our immediate family gave us nothing but support when we told them of the risky procedure we decided to enroll Daylon in back in Feb. Our lives and the way we will forever think of the world changed in the end of March when we returned from our consultation at the U of M. My mom (Barbara De La Cerda) volunteered to help us raise money for all of the upcoming expenses. Once the information of the transplant and fundraiser was announced we were absolutely shocked how quickly people rushed to help us. It seems like every person we know, or have every known, opened their hearts and reached out to us. It's been an emotional 5 weeks for us. I wish I could thank every person individually for all that they have done. The world seemed like a scary place a month ago, but now we know that the silent majority are wonderful, loving people. We have had more people than I can count want to offer their support and encouragement that we've never met. It's so inspiring. As for the people in our everyday life; we are absolutely amazed how much people love Daylon and our family. Our hearts are filled and our dream of trying to save our son is becoming a reality. Thank you so much! We want to especially thank my mom for hosting the fundraisers. Without her none of this would be possible. The event May 1st all but consumed her every waking moment. Thanks mom! We also want to thank our sister-in-law Jessica. She was a pro with organizing the Walk-a-thon and the website! Her time and willingness to help us has been a blessing in our life! Thank you!
I'll post this week with info on Daylon's G-tube surgery as soon as we get word!