First off, I wanted to let you all know, if you didn't already, that Baby Elle has joined Bella and all the other beautiful EB babies at our Saviors side. She left her earthly body of pain on November 4th with her Mommy and Daddy by her side. We have so much love and respect for the Pops. They having taken her passing with such grace and understanding. I am in awe. What a wonderful testimony of faith and love they have been to Brian and I. Thank you to all of you who stopped by their blog to leave them a note. If you haven't, please visit Elle's blog and drop them a line. I'm sure they are grateful.
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There's been a few new developments lately with Daylon, so I'm ditching the post I wrote the other night because it's kind of outdated. It's after midnight so I'm gonna try to keep it quick. :)
Ladies and Gentlemen, I give you,
The good, the bad and the ugly:
Daylon g-tube site started draining like crazy, scratch that, a volcano. I have pictures, but no worries...I won't post it. He's vomiting 15-20 times a day, a for a new twist (well, since last week) dry blood today. His nutrition drip is down...way down. The BMT clinic is actually kind of freaking out over it, but for some reason, neither Brian or I are phased by the lack of nutrition. He looks fine. Well, he looks HUGE actually. Dr. Tolar thinks he's handling it okay, but thinks we need to be on our guard, in case he shows signs of malnutrition.
All of the vomiting and the leaky g-tube have continued to burn his skin. His skin around the g-tube site, his upper chest, neck, shoulders and upper back are SO. RAW. My poor little guy is dealing with it like a trooper, as usual. He amazes me. Just so we're clear, we're getting to the vomit the second we hear it, see it, etc. it's just that with that much acidic fluid being poured on his skin that often, his little EB skin just melts, for lack of a better word.
He saw a surgeon this week and he'll more than likely have surgery on Tues. The g-tube site hole is about half the size of his actual stomach (like the organ, not his belly) and it's reeking havoc. The plan is to close that up and stick a N/J tube from his nose into his jejunum (part of your intestines). Gulp. Needless to say, I'm about to wet my pants over here at the thought. I'm worried about the webbing down his throat, chance of it rubbing and causing further blistering through his airway and GI tract, and of course, him pulling it out. This will hopefully just be for a few weeks while his stomach heals, and then a second surgery will be preformed to put in a new g/j tube in a new location on his stomach. To be completely honest, the whole thing just kills me. Daylon has always had an appetite. He still does actually, he just can't keep ANYTHING down. Pre-transplant, we had finally gotten to the point that as long as we used the right instruments (silicon spoons and Meads Johnson cleft palate squeeze bottles) and the right foods (concentrate Organic Similac and baby food that didn't...well, this was quite the list so we're skipping it) he could eat like a champ with only a few puking episodes a day. Oh well, I guess it's all sacrifice to save him and that's worth it.
Dr. Tolar has been talking with Dr. Hines who is the Neuro Surgeon in charge of Daylon's surgery. They've met and hmmmm-ed and haaaaa-ed over things all week. Originally, the surgery would involve a couple drill holes and I'm not sure what else (I've not talked with Dr. Hines since Daylon left the hospital), but now they're thinking that they just may be able to remove the fluid with a shunt, which according to Dr. Tolar, is less invasive. I have no clue about any of this. I've tried to educate myself on the topic with articles I've found online, but I still have a million questions. We meet with him next week, so I'll keep you posted. Please pray that Daylon will make it through this surgery (I'm really worried about that) and that he'll be able to live a normal life. They think that the fluid has slowed his progress and could actually make it decline. If they move fast enough, then the damage may not be permanent. He'll still have the brain damage that was done from the stroke, but not the fluid. Sorry, I hope this makes sense. It's late and my writing is showing it! I have a question for all of you out there: If you have any personal or professional experience with a shunt, will you tell me a little something about it? It may help calm my nerves. What I would like to know is if the draining line is outside the body? How large are the incisions? Does it have to be a permanent thing?
I know every person is different and no one on the blog has seen the MRI or anything, but just general understanding, is what I'm looking for. Thank you in advance! Oh! Also, thank you to those of you who told us about St. Joseph's pediatric dialysis program! I passed the word and website along to Teresa (she's coordinating all of Daylon's programs for back home) and she's getting it set up! :)
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| He's so studly |
Last little bits of news, Daylon's Day +100 labs came back. Daylon was 100% engrafted with Caleb's cells and he's now down to 94% on one type and 91% on another. I asked if he's losing his engraftment and was told that it's not likely, he just needs to stay on his high dose of CSA longer. His poor kidneys. He'll be checked again in mid-December before we go home.
Speaking of...I don't think I was clear in the last post. We're not going home for vacation, we're going home for GOOD December 20th! That's our, well, it's been real, enjoy having normalcy return to your life, date!!! I AM SO EXCITED! I love it here, but I need real life again. There is a slim chance (like next to none) that Daylon will need to be here longer and if that's the case then just he and I will return. The moments of daydreaming in my life are all about Christmas. I can not wait. Brace yourself. There will be more Christmas talk. I guarantee it. :)
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| End of September |
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| 3 weeks ago |
Here are some first for Daylon from this week:
- started wearing REAL diapers! He's wearing Pampers Sensitive now! I can't believe it! This is a huge improvement! Diapering an EB kid is trick-ick-eee. When he was born (before we knew he had EB)he wore regular diapers= completely raw, fleshy skin, then cloth diapers that can't be worn with the rubber pants because of the elastic so he wore nothing over them= 10 diaper changes and full onesie changes a day= no skin on his elbows, then cloth diaper with sheepskin cover=EXPENSIVE and eventually the sheepskin got rough from being cleaned too often, plus the "dirty" diapers leaked through anyway, then my "Ah-ha!" moment! A gerber 3ply cloth diaper (thick and soft. We were using them from the start) wrapped around his diaper area and a soft regular diaper covering it! The poop and pee stay in the diaper without ripping up the skin! Hooray! Ah. Good times. I felt like a genius that day. Pops came up here and found out they're doing it too. LOL!
Remember when I said I was tired so i was gonna keep it short? Haha!
-Everyone is desperate to start moving Daylon towards making milestones again. Kind of panicky, is the feeling I get. Anyway, we need to figure out how to get him to put weight through his legs. Can't hold him from under the arms because his skin will tear and there's the Hickman, can't hold his fingers because he has never, EVER stood on his feet before so he's weak and his hands are still a work in progress. What to do? What to do? We went to Babies R Us, found an activity center that he was too small for and had the softest, padded seat and bought it! Thankfully it was the cheapest one too! The reason behind the too small bit, is that then it forces him to stand on his whole foot and he can't enjoy the springs in the seat and rattle his fragile brain this way too! :) He's never been in anything like this in his life, so he thought he was pretty cool and we thought he was pretty cute. It worked. He stood and played!
Brian and I took the blister test. I got my first blister at 40 minutes and all three at 43 minutes. Brian got his first blister at 38 minutes and all three at 43 minutes. We're twins! ---not literally, just by blister results
I wanted to let all of you in Southern California know that there's going to be a blood drive in Daylon's honor. As you all know, Daylon was o a platelet drip for for a couple weeks, received who knows how many blood transfusion (in fact, he's had two just this week), and other blood products. He has caused quite the rift in the blood banks supply. :) The blood that will be donated will not go specifically to Daylon, but rather people in the area, however it will help make up for what he's taken out. The goal is 200, so if you can come, feel free to bring a friend! :) One of my favorite parts of the event is that there will be a table there, where you can sign up to be put on the National Bone Marrow Registry list, so others who aren't as lucky as Daylon to have a identical sibling match, can find someone. Please, sign up to help save a life. Who knows...if you give blood and sign up, you may save a few! Everyone who participates will receive a complimentary Chic-Fil-A sandwich coupon (not mention the free orange juice and cookies....if that's not motivation :) ...)
Blood Drive
November 13th, 2010
7:30 a.m. to 1:30 p.m.
1123 Lincoln Ave. (inside the church gym)
Corona, CA 92882
Questions? Call Darrell or LouannMc Phie 951)735-3985
"I'm super everyday, so I should wear my Superman costume today!...also, because I like to fly."- Caleb
Sweet Dreams!
PS-A special thank you to Myrna and Dwight for beautiful birthday cards for the kids and yet another HUGE care package! You guys are great! Can't wait to meet you!
9 comments:
re:shunt: It is a permenent thing. The lines are inside the body. There is a small (approx. 1-2inches) in his head, a couple of 1 inch incisions going straight down his body to his stomach. There are different kinds, some have a small bulb under the skin on his head that you kind of "pump" from time to time, just like pushing a bit on his skin, this will help it drain. Every few years, it needs to be "serviced" replacing it as necessary. Usually you notice immediate change in affect and behavior. It usually carries minimal complications works great!!! The usual complications exist, i.e. infection, etc. There is minimal bleeding, pain, etc. This is a very simple explanation, hope this helps until your appointment. Compared to what the sweet little boy has gone through, this will be small!! God's best blessings on Dayon and your family!! Deb, RN (ICU)
One shunt success story: My grandfather, Don, had parkinson's-like symptoms that did not respond to meds for a year or more. It was very scary. Finally a wise doctor discovered he had fluid in his brain, and he got a shunt. The moment he recovered from surgery, his hand tremors stopped, all of his other symptoms disappeared. He could shave again, do work around the house, and go back to his fun projects in his workshop and it changed his life. Many things he had lost coordination to do (and assumed years earlier that it was just because he was getting older) he was able to do again. I hope Don's story gives you some hope.
Thank you for posting, I've been waiting to hear how your handsome man was doing. It warms my heart to see him standing up like that! Thank you for keeping us updated and know that he is always in our prayers. Hugs.
Shunts are internal, no outside draining. They do need replaced over the years. A shunt will istantly relieve the pressure/starts draining so changes would be seen instantly. I don't mean to make light of it, but they are very common (trying to make it less scary for you...for neurosurgeons they're routine to place them). I know as a parent the thought of it is intimidating and scary as heck.
Anyway, if the generic answers have created more questions ask away.
So happy to see Daylon happy.
Oh, and I have an idea. You were talking about the bood drive on Daylon's behalf and I was going to say I'd be happy to donate, but I'm across the country. Well, I'm going to donate despite being across the country! Anybody can find a blood drive or Red Cross in their neck of the woods. Go give if you can!
Happy Monday!
Hiiii! The explanations for shunts have been great! Just one more word- they can last a long time or "fail" and have to be replaced after no time at all. They have to be replaced for two main reasons: they clot off at the end or the child outgrows it. Aka- daylon grows so the shunt isnt draining in his stomach like its supposed to. Something like 50% fail in the first year. If you make it past a year, there's a good chance he'll keep it for a while.
You do see an immediate change in their behavior so that's good. The neurosurgeons who do it at our hospital make 3 smallish incisions. One on top of the head is usually the biggest one 1-2 inches, one small one behind the ear, and one more small one on their tummy.
Please email me if you have any questions about what I said. (starlakaye@gmail.com) I'm so glad you're going home! I'll be there at christmastime too so you should call my parents house if anything small comes up you need help with. <3. Good luck!
-Starla Aragon
Thank you for the detailed update. Daylon amazes me everyday. What a GREAT little man with a GREAT family. I've been constantly praying that he doesn't have GVHD and that his kidneys will repair themselves so he doesn't need a transplant...now I'm gonna add a successful surgery to my prayer list and ask that he not throw up so much and that he can get some nutrition down.
I'm so glad that you guys are going to get to go home for good. That's awesome!! Merry Christmas Edling Family!!
Count me in for the blood drive.
Lots of Love,
Amber McLaughlin, CA
I didn't realize you guys were coming home for good on Dec. 20! YAY!!!! We must schedule a play date for the kiddos. Daylon looks so much like Caleb in that first picture you posted. We will pray for successful surgeries for Daylon.
He looks like he's having a good time in the bouncer/exersaucer thingee. Those things are great for everyone, apparently!
He will be in our prayers for his surgery.
I didn't get it either. When you said home to stay, amazing! :o)
Wow, so much is happening.
Cheryl
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