Feeding Tube

The tube is in. Holy cow. What a crazy day. But God took care of everything.
We arrived at 10:00 am and I didn't put the tube in until 2:30. I have to say that this hospital is more like a hotel. Waiting around wasn't that bad.



The night before we left.



Bright and early the morning of the appointment.






Oh how he loves this bed! And the giant remote and the ability to move the bed with buttons. He has had so much fun turning lights on and off and turning the tv on and off and calling the nurse when we have a problem.






Quick lunch before the procedure.



Pull out bed that is lime green. My favorite color.


The giant flat screen tv. It also has Internet with a wireless keyboard (I was hoping to facebook on it, but haven't had a chance), and it has movies on demand. Maddox is in LOVE with this tv. He has asked if we could have a room like this at home. There is also a microwave and refrigerator behind those doors. And the lights in the upper right corner are mood lights. There are at least 12 different light patterns to choose from. Of course we had to keep the blue ones on ;)






Wipe off board with all our info.

So our incredible, fabulous nurse Holly trained me in on the tube around 2:00. She had never trained anyone before, and the nurses didn't know I was going to be doing it. I was terrified. So, we got Maddox, he sat on Craig's lap, we measured the tube out and I put it in. Maddox pulled it out before it was all the way in, so I did it again and it went in. I don't even remember putting it in really. Holly said it went in super fast, it felt like forever. Talk about traumatic for him. Then the wire guide that is in the tube wouldn't come out. That was the worst part for Maddox and everyone. The poor boy threw up so much and was screaming and crying. It took him about 2 hours to calm. Then later that evening he was almost back to himself. Playing and singing.



After the tube was put in. Playing with his bat cave castle he got for being so brave. Before he felt like himself, he just sat in my arms all limp and staring off into space. That was horrible.




Before going to bed. His tube was hooked up to the formula around 9:00pm. It wired for him at first, but then he did really well. They gave him his melatonin and Zantac through the tube, but he didn't like that, so we'll continue with the oral way.

Last night went pretty well. Once Maddox fell asleep he. was. out.
They did vitals every two hours, and the feeding pump alarm went off almost as much. Maddox pretty much slept through all of it. When would come in for vitals, he would stick up his little arm while still asleep. They tried to increase his feeding rate to 55ml/hour, but he almost got sick, so I asked them to stop it for an hour. The formula is also refrigerated, so Maddox can feel the cold through the tube. The fabulous nurses this morning were able to fix up his tube on his cheek so he didn't feel it there, which helped a ton.

The dr. came in this morning and they are switching his formula so it isn't so dense and it doesn't need to be refrigerated. They also had to pull the tube out 4 cm because the tube went into his small intestine. So he should do better with a faster rate of feedings now and that is probably why he was so upset yesterday and throwing up so much (not that he wouldnt have been upset).

I am amazed at how well he is doing. He has been afraid to go to the bathroom and last night he said it was too scary to go while being hooked up to everything. He was happy this morning that he can move and it doesn't hurt. So much to get used to. Well, that's about all the time I have to update.


Maddox took this picture last night.