Beware, the pictures below might make some a little queasy!
After conference this afternoon, I was laying on the couch with Elisabeth asleep on top of me. Nathan had slept through the entire afternoon session of conference and so when he started crying I asked Jake to go upstairs and bring Nathan down to me. Jake brought him down to me and I sat him on my chest and started playing with him. Nathan was giggling and being very playful. He saw his feed tube (still attached) and held it up to show me. I looked over at the tv for a moment and then glanced back at Nathan. He proudly held up him feeding tube (and then entire button with it!) I did a double take and sure enough formula was oozing out of his sight and Nathan was pretty happy with himself to be able to get his tube in his mouth without any difficulty. I frantically told Jake what had happened and Stephen (my nephew going to BYU) grabbed Ellie off my lap so Jake and I could go take care of the problem.
The button was deflated and so Jake hurried and found the proper syringe to fit the port and test it to see what had happened. He discovered that the balloon had simply popped! So, we hurried and found our last button on hand and all the supplies to put it back in.
1 Mic-Key 14 French 1.2 cm aprox $450.00
1 syringe $.10
1 cavilon barrier film $1.00
1 iv bandage $.17
1 prescription triamsinalone cream copay $5.00
1 box mefix tape aprox $18.00
1 package q-tips aprox $2.00
1 package Baza Barrier Cream aprox $11.00 (unless you "borrow" a dozen or so from the nurses when Nathan had his open heart surgery. Every new nurse he had during that week we asked for a new bottle since it was so expensive!)
1 Nikon D40 Camera to capture the picture $600.00
The look on Jake's & my faces during the frantic scurry to fix it -
And by the way, even though we are old pros now when this button comes out, the GI doctor and G-tube/Nissen doctor have scared us so silly that the wound site will start closing in 20 minutes if there isn't a button or Foley catheter tube inserted at the site that we FRANTICALLY go take care of the problem right then. We don't want to go through an emergency surgery to have the button placed again!
Nathan through up through his nissen this morning for the first time. I felt so badly for him and was grateful that I was right next to him on the couch when it happened. He started choking and so I lifted him up so that he wouldn't aspirate. I know that throwing up was a possibility; he has wretched pretty hard though and this has never happened. It frightened me a little bit.
As for Nathan's growth, most of the concern is that Nathan isn't tolerating his feeds very well still. He is on prevacid, erythromiacin, and periactin (those are phonic spellings!), to help him with motility issues. He still gets a substantial amount of gas (hasn't burped yet through the nissen), and wretches quite a bit. He has been on 22, 24, 27 and 30 calories per ounce formulas, but every time we increase the caloric content, he gets sicker meaning he tries to throw up 2 -3 times per feeding. I know the doctors are all concerned about weight gain because it could be a sign of more heart problems, or other underlying problems with his gut. We've seen blood come out of his g-tube 4 or 5 times since his heart surgery in June. The doctors are also concerned that Nathan shows no hunger signs and could care less if he is fed. We've missed a couple of meals here and there and he doesn't cry if he's hungry. Nathan started life at about the 50% for weight, now he's barely holding on to the chart. He isn't doing much to burn calories either (no crawling, rolling, not even burning calories to feed himself). We're working slowly on increasing the amount he eats, but its just baby steps in that department. I've had all of his doctors in the last month (except cardiology whom we see on Thursday) express concern. They all want to increase his caloric content again but I'm not so hip on that idea! I'd love to be able to show a chocolate milkshake down his tube to help him out; hopefully when Nathan figures out how good they are he'll want to take it by mouth instead!
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