Day + 139 Life without a g-tube

N/J tube holding on for dear life! LOL!

   Well, folks, it's been a crazy few days around here. In our last post, I mentioned that I had to finish pulling out the n/j tube and we were going to try to start feeding Daylon. Well, that day I fed him smoothie type food and drinks and they all fell directly out of the OPEN hole on his tummy. By dialysis the next day, he was a screaming ball of fury, ravenous with hunger. Brian and "Dialysis Dave" had to physically hold him down to keep from losing the run. His pressures were all over and he was t-i-c-k-e-d. I dressed the three middle kids and myself, grabbed Daylon's "Baby Mozart" movie and ball popper and headed for the hospital. Half way there I decided to stop in at Jamba Juice and grab a super thick smoothie for Daylon. Jamba Juice is three times as thick as Gerber's smoothies, so I thought we might stand a chance. When we got to the dialysis unit I started to feed Daylon the smoothie. Forty-five minutes later the ENTIRE 32 oz. smoothie was gone. Naturally, someone his age can't drink that much...you see where I'm going, don't you? It was all out the hole and all over him. As long as food was going in he was a happy camper. I have no picture to show you, but let me help paint a mental picture of this hole.  I needed to stay on top of the constant drippage to keep his skin from burning, right? Well, when I would remove the bandage or towel to change it out, the juice would spout out like a fountain! It was like he had his own blow hole. Seriously. It was shooting up in the air. Naturally, we all had a good laugh every time I would switch out the dressing, but if you think about it, that's a big hole!
  Brian and I were torn on this dilemma. Brian wanted him to be hooked back up to something asap so he could get the nutrition he needs and no longer be hungry. I wanted to somehow figure out a way to see if we could test the waters of life without a G-tube. It killed me to see him so hungry, but my gut feeling is that life (and vomiting) would ease up if we ditched the tube. We had no clue what to do. Thankfully, our nurse coordinator Teresa, saved the day! Her plan, which is the current plan, is to give Daylon TPN (IV nutrition) over the course of 12 hours every night and then he can try eating during the day. Perfect! This plan makes so much sense, I'm kind of embarrassed that it didn't cross my mind. :)
  He started TPN that night and the hunger has left...or at least he's not a crazy baby anymore. :) Now that I know we have the BMT doctors backing our idea seeing what things are like without the tube, the stress of it all has gone down. After watching the 32 oz smoothie pour through him, I decided to try to wait until the hole closes up to start really feeding him. All that acidic stomach bile on the skin can do a number. Unfortunately, Daylon was still dripping like a faucet and needed to have his dressing changed every hour or so. It's been non-stop at our house. Daylon is requiring a ton of care and no matter what I do, he smells like puke, I smell like puke and the room he's in smells like puke. It's lovely. :) This morning when I changed his dressing before dialysis, his skin was so raw and red that I decided to call the surgeon back. The top of his chest looks like rolling hills of blisters. I would like to see the hole closed up, but the doctors are afraid it may cause more trauma to the skin. Today the Nurse Practitioner put a bag up against the hole and it's working great. My only fear is what his skin will look like when it's removed.

Night of surgery with a wrapped tummy

 
  Daylon is LOVING life without a g-tube. I really think that it had torn up his stomach so much that he was in constant pain. He's smiling and happier than I've seen him since before the transplant. It's amazing! He laughing at silly baby things and it just excites my heart. He's not thrown up once since he had the tube removed and the stomach is no longer bleeding. He's dying to eat! I can't wait for this thing to close up so we can get down to business! Now they're saying another week or so. Oh, well. What's a week? Probably feels like a lifetime for Daylon, but he's always been such a trooper. He just takes whatever life throws his way. Ah, I love that little guy. :)
  Because all of his meds are going out through his stoma (the hole) he's now on IV CSA and Keppra (his seizure med) along with the Vanco (IV antibiotic) that he was already on. I'm constantly flushing and clipping something, but his levels are coming back up. :) I think I forgot to mention last week that his foot culture came back positive for a large growth of staph...that's what the Vanco is for.
  We also went to the memorial for Elle yesterday. It was spiritual, uplifting and beautiful. What a great way to remember the life of such a darling little girl. The Pops fly home tomorrow morning and we're going to miss them. It's going to be so lonely here now. Well, I guess I could let me kids keep me busy. LOL!
  Oh! Just to keep you all in the loop too, Daylon has started babbling like crazy since the surgery too! He's back to saying "Mama", "Dada", "hi", "up" and I swear there was an attempt at "I love you"! I said it first to Daylon and then he said something back that sounded a whole lot like "I love you"! Brian and I turned and looked at each other and said, "Did you hear that?" Of course, we couldn't get him to do it again though. :(  I guess his tummy hurting just put him out of the mood to talk! Ha! Go figure!

What is this delicious invention? Sugar, you say? Hmmm....What? It didn't leak! :)

  
 Tomorrow is my favorite day of the week! The RMH has preschool every Friday for an hour. What a wonderful hour. Just me and Brian and a sleeping (cross your fingers) Daylon. It's our date hour...which usually just involves us eating breakfast together and talking, but do you have any idea how nice that is?!  Well, most of you are parents, so you do....don't worry, it's okay to be jealous. ;) Sweet dreams.  

surgery update- It's done!

It's been a crazy night and I'm tired, but I just wanted to give you all an update before I hit the hay!
Daylon's surgery went well. The doctor that preformed it isn't his normal surgeon and he decided not to close the hole. He left it open and will allow time to heal it.
I thought it was leaky before! HA! Anyway, they put in the n/j tube down his nose and into his gut. Before he got home, Daylon had it half way pulled out. :/ We called BMT and they gave me instructions on how to properly remove it (I feel like a nurse more and more everyday!). Tomorrow they'll come up with another plan. This is all fine with me, because I've been curious to see how he would do with no tube.
He's had all of his meds orally (for the first time since transplant) and kept them down. I just give them 15 minutes apart. He also had 1/2 a thing of spoonable smoothie babyfood over 45 minutes for dinner and 4oz banana smoothie before bed. So far NO PUKE!!! Yay! It does help that A LOT of it drains through the hole and all over him (and me), but hey!it's a start! The hole should heal very quickly. Ok. That's it from me! Thanks for all the extra prayers! Oh! Also thank you to all of you who have mentioned that you're going to the blood drive on Saturday! Someone is even going to find a blood drive on their own, since they don't live in the area! That's awesome guys! We're so thankful for your support!
Sweet dreams.
PS- I'll try to post pictures tomorrow!

Surgery Update!

Just wanted to drop a note and let you all know that the surgery clinic called and said that the doctor wants Daylon to have his stomach surgery asap. He's vomiting several times an hour now. He's going in today 2pm CST. Please keep our little guy in your prayers! Thanks for all the support!

Day + 136

I'm really sorry I haven't posted. It's really unfair of me to leave you guys hanging for that long. Our computer is still somewhere in Colorado and life here has been stressful and sad.
  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! :)

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. :)

End of September

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

  

 Quote:
"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!

opps!

The link to Elle's blog was incorrect in my last post. Sorry! Try
www.sweetbabyelle.blogspot.com or click on her name to the right of the screen,under Daylon's EB friends.
Thanks!

Day + 133 Part one

I have a post written that I'll post tomorrow. Daylon is doing well..some more bumps in the road, but nothing major. Right now I beg all of you to visit Elle's blog and leave her parents some words of encouragement. Please pray for Elle and the Pops. Please pray for the children in the world who suffer with EB and the families who watch them suffer. Please pray for a cure. We need you.

Day + 129 Halloween!

HAPPY HALLOWEEN!!

  Hello, All!

  I hope all of your children have filled their bags this weekend with plenty of treats, so you can thoroughly enjoy your mid-night candy bag raid. :) No. No one out there does that. ;)

  Ah! I feel SO much better today! Last nights journaling was so therapeutic.

  Our morning started out with Sadie heave ho-ing in bed, followed by Brian feeling queasy and two other children have another sort of tummy trouble if you catch my drift. All of that loveliness added up to a day lock up in our room. No church, no nothing. It actually wasn't a horrible day to be honest. We were all together without a single interruption from Dr. appointments, therapy, dialysis or even school.

   Poor Daylon is still suffering with his eyes. He did open his eyes for a few moments here and there, but they were pretty much clamped shut and dripping tears. He amazes me so much. He hardly fussed today but was in obvious pain. In fact, at one point tonight I had him on my bed and when he could feel that I was next to him and spoke in a silly voice he would do his little Stevie Wonder smile. :) I hope that's not disrespectful, but that's who he always reminds me of when he smiles with corneal abrasions! Today I found two new sores on his chest where his Hickmann must have touched. It is hard to see his skin's new condition come and go, but Dr. Tolar thinks that by getting wounds, the news cells are forced from the bone marrow onto the body. Basically, these little dips in skin condition should equal a better long term condition.  As long as they continue to quickly heal, we're still on the right path. :)

Today there was a whole lot of this...

                                                        and this...

but we did see some of this...

and this...

   On Saturday, we went to Borders and purchased the signing book I grew up on.  It's called, 'The Joy of Signing'. I'm familiar with the book and I really like the format of it, so it was an easy pick. I haven't needed to sign in 15 years so I've been brushing up on it. You know, initially I felt fairly confident in my ability to sign for Daylon, but after looking over the book...YIKES. There are so many words that I had no clue how to sign, for example; vinegar or Korean or humble or blood pressure. I have to admit, I did have a moment sitting here on the couch  tonight were I started to feel like I might hyperventilate. :) Ha! Yeah, uh can you say "drama"?  Thankfully it lasted for about a minute when I realized that Daylon won't need to know about vinegar until Easter when the eggs come out, so I bought myself another 6 months easy.  :) LOL! The kids have learned about 15 signs this weekend and Keira and Caleb have them nailed. The twins are about 50/50, but hey, it's only been two days. Keira actually signed "Mom, I want dinner" all on her own today, so I was impressed. :)

  Our big news of the day is that Dr. Tolar wrote me this evening and said to go ahead and buy the flights home! I'm so excited! We fly in on December 20th!!! There's a lot of work to be done, but he wanted to get it done sooner rather than later. As of right now, he said we can keep Dr. Metz as his Pediatric Dermatologist back home and we'll probably work with the BMT program in San Diego.  We're still trying to hammer out the details. I have no clue where dialysis will be. Do you know that less than one percent of people dialized in the US are under 18yrs old? The pickin' is very small when it comes to find a new dialysis unit. I just hope CHOC (our hospital...Children's Hospital of Orange County) dialysis babies.  I'll keep you all updated, but I had to blurt the news!

  Here are some pictures of our Halloween.  We pushed the two Queens together, I made some ghosts, bats and spooky faces from construction paper and put them up and then we ate a picnic dinner on the beds and watched 'Mickey's Halloween Treat'. The kids loved it. Hey, whatever makes 'em happy, right?

 Keep those prayers coming! We love our support community! You guys are awesome!Sweet dreams.

If you look closely, you can see Daylon's leg. He's there...Just relaxing.

Keira's Halloween face...she really is a nice kid...promise!

Ahhhhh. I love my little Monster.

Oh! Speaking of I got to let you all in on the life of twins. Here's an ACTUAL conversation I had with the twins in the van on Saturday. They have become quite the double trouble....

Daylon: AHHHHHAHHHHHAHHH! (randomly yelling)

Me: Are you talking back there my little Monster?

Sadie: Mama! Don't call him that! He is not a monster, right Ly-lit (Violet)?

Violet: Right, Sadie Bug! Mama! Don't call him that! He is not a monster. He's a   Daylon, Mama. Right, Sadie Bug?

Sadie: Right, Ly-lit! He's a Daylon. Mama!

This is how sooooo many conversations go around here, right now. Well, I guess it's true. They are twins. :) .....and to think I doubted it.