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.