Monday, November 29, 2010

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!

29 comments:

Karen said...

So glad to see this post. We were worried when nothing was on for so long. The pictures are great! He looks pretty good!!! Hang in there, prayers are constantly sent in your direction!

Lisa said...

Thank goodness, Daylon and the whole family look great! So relieved :)

Amy said...

So glad to hear from you, I was really worried! Daylon looks wonderful in the pictures, so nice to see him smiling. Blessings to you all.

Amy F. P. said...

Thanks for the update. I've been wondering how things were going. Daylon looks so handsome in his shirt and tie. I can't believe you're already getting snow too. What fun :) I'm so happy that things are continuing to progress.

Shelley said...

Oh what beautiful pictures! The suit and tie pic is especially handsome, and he looks so happy and healthy in the one on the hospital bed with the toy in front of him. I love it. And I'm so glad to hear you were able to have Thanksgiving with the family. That's what it's all about after all - Family. :) And thank you for the update. Our prayers are still with you!!

Anonymous said...

So glad to "see" you again!! I was getting worried, too! Love the picture of Daylon sitting up in the crib! He looks wonderful!! Awesome progress little man!!
Prayers from Illinois,
Lisa

Joy said...

It sounds like Daylon's neurological development is super promising! For what it's worth, Daylon is a day older than my Jack, and my little guy doesn't say much more than Da Da, Ma Ma, sister (dee-dah!), don't, and no. I'm super impressed that Daylon is doing so great! He looks spectacular -- what a charmer.

sharon kaye said...

I was so glad to see your post today. I was getting worried. You still have ups and downs, but there is progress and that is good. I love the photo will all of the children on the couch. They are beautiful. I'm so glad you can be together again as a family.

The McLaughlins said...

I am so excited to see your post today!! I'm glad there was good news to go along with the not so good news. I'm sorry the kids got sick but at least you and Daylon got some good one on one mommy and Daylon time!! I'm sure you BOTH really enjoyed that!!

That Dialysis nurse makes me really mad!! I'm sorry to hear that she did that to Daylon's poor little hand. She should know better!! I hope you gave her a piece of your mind!

Great pictures you posted today of Daylon and the rest of the family!! He is really looking soooo good. What a handsome little man he is. I am very impressed with his talking and sitting up time!! Good job Daylon!! He is so strong and he is making all of those dr's eat their words. I pray for Daylon every night and thru him I know that God is answering my prayers. Daylon is such an inspiration. I love him!!! Take Care Edlings!!

Lots of Love,
Amber McLaughlin, CA

Jan's Blog said...

Daylon looks SO GREAT. I know the struggles continue, but he's come so far...been so blessed. Prayers, as always, being sent your way for everyone!

Amber said...

Daylon looks so grown up with the Church clothes on.

Random thoughts:

my kids were all diagnosed with asthma, but it just means they have weak lungs, so any cough/cold illness heads there first and they do a nebulizer breathing treatment every 5 hours while the cough is around. Weather is key in asthma attacks. It may also be allergy related.

My kids-especially Cole and Luke--were/are late talkers, speech delayed. I was translating simple words like juice/dog for my parents when Cole was 2 1/2! He was and still is in speech, and Luke, at 2 is very speech delayed. He has about 15 words, and none are very clear except Dora, no baba and MOM!!! I think your assessment on Daylon's speech was spot on.

Kiza said...

Daylon is looking so great!

I've been following for months... happy to see such progress!

Kiza
Central MN

Anonymous said...

Wow, I can see the old Daylon in his photos! It is fun to see his cute little chin again. He just looks like he feels so much better. Keep healing buddy!

Bella's Blessings said...

Man, it's GREAT to hear from you again! Glad to hear things with Daylon's belly are better! Are you guys done with biopsies for a while now? What were the most recent findings? Forgive me, I don't remember. Any new EB kids and /or families around? I'd like to lend and send support if they are there! You are one powerful momma! Keep up the great work up there. Still planning on coming home for Christmas? All our love to you all!
Tim

M. Teter said...

He looks really amazing. Jess has been keeping me
Posted on all he has been through. Glad that g tube is finally fixed. I hope he is eating better and his mouth is healing. His skin looks great! Tell the neurologist that Daylon has a superior intelligence because he speaks 2 languages and switches back and forth to mess with their heads. Daylon is a genius

kmzim said...

As I looked at Daylon's pictures, I was thinking how great he looked, apparently everyone else noticed it too. He really does look so good!!

Kerri

Heidi said...

Oh my goodness! Daylon looks amazing! You can see it in his eyes.. What a handsome boy.. Your family has been truly blessed.

Annalien said...

Thanks for the update. Daylon is looking amazing in these pictures - also becoming very much a little boy and no longer a baby. Praying for continued healing.

Anonymous said...

Glad that you are back! Daylon looks much better and alert. It's so nice to see him smiling and playing! I know it is still quite difficult for you, but think he will be better and better. Thanks for the qute pics of your gang, they are all lovely children.

ElenA

Anonymous said...

Relieved to see you are doing well! Daylon will go at his own pace with speech and activity, nobody knows how a BMT/EB child 'should' be doing! Wishing you all the best during the holiday season.

~Sarina
Salt Lake City, UT

Aviles Family said...

YAY! An update! I was getting so worried! I LOVE all the pictures! Daylon looks good! I hope your computer will stop acting up! That has to be SO frustrating!
I'm so glad that you were all able to be together for Thanksgiving. :)
Praying for you guys all the timE!
Love,
Memory

Anonymous said...

So glad to see an update! You all look terrific but especially Daylon. Our love and prayers continue to go out to you!

Elle's Family said...

Jennifer, so glad to see you blog again. Great pictures and good news with the head images? I don't like the new bleed though, but I'm so glad the fluid is reduced and that he is learnign so much sign language. I have been wondering about Daylon!Sorry to hear the other kids are sick. I have something again too. I guess the MN flu shot doesn't apply to CA bugs! Miss you guys, love the pics and love the new glasses. Hugs from California, becky

Anonymous said...

Jennifer, so glad to see the blog, we were wondering and hoping things were going well with all of you. What great pictures of all the kids and Daylon. He is really looking good and seems to be happy. I just love the picture of him in his new glasses. He looks very professional. Sorry that the other kids have been sick, but they have the best parents in the world to take care of them and you can see the love you have for your children. Tell Sadie & Violet Happy Birthday for us on Dec. 3rd. They are very special to us as all of you are.
Our love and prayers continue and can't wait to see all of you when you come home to CA for Christmas. Take Care, God Bless & We Love You.
Keep warm in that cold weather. Hugs from us to all of you.

All Our Love;
Myrna & Dwight ( CA )

Anonymous said...

I have been following your blog for quite some time now. I am so impressed with how you are handling these trials, and Daylon is such an inspiration to me. I think your little guy is looking great, and I pray for his continued recovery.

Kim from Utah

BRIAN AND BROOKE said...

I am so happy to see your post! I figured No News is good news :).... But Dang did they take long enough with your computer!!!!
Sounds like you had a pretty long several of weeks!! I am so sure it was hard to be separated from your husband and other kids. But then I am sure you soaked up Daylon time :) I hate ALL the sickness that comes with these winter months. BOO!!!
Can I just say I LOVE the pictures you posted!! Daylon is just the most cutest thing. I LOVE LOVE the picture of him smiling playing with his BIG race car track.. PRICELESS!! Love that smile, makes me happy!! Him with his glasses on? I love it.. well it didnt look like he liked it but it sure made for a god picture. Ok... and my husband is drooling over the viking players and that sign ed hat!!! Thats his favorite team!
Daylon is just the strongest little boy I have ever known... and I am just so proud to be able to know YOU and your family!! I love you ALL!
It sounds like his speech is doing just fine i wouldnt worry either and I am glad he had the surgery on his tongue sounds like it will help him. I pray that his staph infection is healing well and that things get figured out with the new blood on the right side.
Keep doing what your doing.... your doing a GREAT job and a great example to us all!!

Anonymous said...

Just wanted to say that Daylon is looking absolutely adorable. Such a sweetie.

Anonymous said...

Boy oh boy, the post was sure worth the wait!!!!!! He is getting so grown up and so very handsome. Then again how could he not be cute....just look at his family. Hopefully the kids are all over their bouts with the croup etc. Prayers are always going up for Daylon and all of you every day. God bless you all. Special hugs and kisses to Daylon....he is my inspiration and hero.
Bernie in California. xoxoxo

Jamie said...

Thank you SO much for the update. I was praying alot that everything was ok with Daylon and your family. Thank you so much!

prayers for new skin and successful treatments.

PS-I agree with you about the neuro stuff, he seems to be ahead of where I would think a child whose gone through all that has would be. Esp with pressure on his brain and some bleeding! Dr's are too concerned with their charts sometimes :) Everyone is SO upset that our daughter Lucy isn't walking at almost 15 months, except US ^_^

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