Thursday, November 11, 2010

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 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.  


sharon kaye said...

I am so amazed at how you can keep up with everything. It wears me out just reading about it. Have a wonderful "date hour."

Anonymous said...

I always have mixed feelings about your post. I am super excited about Daylon babbling again. I have been praying for that. That hole sounds really worrisome though. I will pray for that to heal fast.

I have been meaning to post this... It may be a bit strange since I really don't "know" you, but I think I am atune (is that a word?) to Daylon after following your journey for a long time now (since the day the trial was approved by the insurance) because on the day of the surgery I had not read the post and I just felt this desparate need to pray for Daylon all day long. Then at night I saw the Facebook message that said that the surgery went well and I immediately knew that that was the reason I had felt the need to pray for him...more than usual if that is possible. So I thought I would share that.

Anonymous said...

Oh, that's so good he is not throwing and is smiling so sweet! I hope the hole will heal soon, the staph will go away and you'll have much more happy times! Daylon really amazes me and his skin looks good at the picture.

You are wonderful parents! Wish you a nice and calm "date hour" :)


Annalien said...

Love the pictures of Daylon! I pray that his stomach will heal quickly and that that will solve his eating issues. It sounds so promising!

Carla and Matilde said...

Such great news!! Oh Jennifer, Daylon is looking so good! The picture of him on the sofa speaks for itself. What a happy baby!
I am so impressed with his skin!
I just love the way you turn “bad” things into hilarious moments. Laughing is the best remedy!

Hope his hole will close very soon.

All the best,
Carla, from Portugal

Amy F. P. said...

How exciting to hear that Daylon is talking!! I'm excited to hear how things continue to improve once the hole is healed.

Anonymous said...

Okay now, I LOVE this post!!! Soooo glad Daylon is getting back to his happy old self. Praying God will heal up that hole and give you & the docs wisdom to know how to help him.

Jan's Blog said...

I'm just beginning to realize what a miracle Daylon it, and seeing how tightly Heavenly Father is holding all of you in His arms. I am all amazed!

Anonymous said...

Dear Edling Family,
You are all in our thoughts and prayers as you continue on this journey. Hope that Daylon's stoma heals well and soon. Enjoy your "date hour" with Brian since it is so hard to find the time. You are doing an amazing job taking care of your family.
Melody and family (California)

The McLaughlins said...

Oh Daylon, what a strong little boy you are. You continue to impress me everyday.

Jen, I am so glad to hear the good and bad about Daylon. It seems as though the good is out weighing the bad and I like that! I'm praying that his little tummy will heal fast and that you guys will be able to feed him some real food real soon!

I'm glad you guys got to have a little date this morning. I hope Daylon cooperated and had a little nap for you. It's important to have that time alone with eachother.

I'm so impressed with Daylons growing vocabulary. He's almost back to pre BMT speech right? That's so awesome!! Maybe now that his G/J tube is out and his stomach doesn't bother him all of the time, he will be able to concentrate more on talking and just movin and groovin!! Daylon makes me smile!!! Everytime I think about him I feel happy and just have to smile.

Take Care,
Amber McLaughlin, CA

Emily said...

This was such an amazing and beautiful post, thank you! I'm amazed that you are able to function, to stay on top of all your kids, including one very medically needy child. =) And yet, you do it all with a positive attitude and a cheerful spirit. That's remarkable! Speaking of remarkable.. Daylon is talking!!! OH MY GOODNESS!! That deserves some serious celebration, you were considering sign language and now he's back to imitating speech!! Yahoo!! Thank you for sharing your journey with us. I hope his tummy hole heals quickly and that he's back to eating soon! I also hope you have a wonderful date hour =).
all the best,
Emily, FL

Amber said...

You need a superhero cape to wear with a giant J on the back. A cape that repels puke and it's stench.

Love the baby babble!@!


Geez I am out of town and have not gotten on the blog.....and I feel like I have missed out on MONTHS worth of INFORMATION!!! Never Again! I need to play catch up here!!
So glad the surgery went ok...what a TROOPER!!
I love the pictures you posted he LOOKS like he is HAPPY!! I am sure you are just LOVING that he is NOT throwing up anymore! I cant imagine the 32 oz of Jamba juice spouting out! I am hoping that HEALS ASAP so he can get some GOOD-YUMMY FOOD!
I would LOVE to hear Daylon's sweet babbling !! Baby Babble is my absolute favorite!!
I hope you enjoyed your date with your hubby :)

Mom to Many said...

I am trying to imagine a little stopper for Daylon's tummy. Too bad it's not that easy.
Precious baby.
You are doing a great job! :o)

Oh, and I thought you might be interested... The margins were clean on my Dad's Renal cell carcinoma. Whew! The Dr. was worried after surgery that he had taken too much, but it was enough. :o) Feeling blessed.