Recovering

Maddox is almost back to 100%. Today he has been up since 4:30am. Playing.  His diaper leaked, which woke him up, so he decided to stay up and play. I am sleeping in his room for a while, so I have been up since then too. He is amazingly cheerful though. Today he is running around and playing almost like he used to. He still guards his tummy, but if you didn't know he just had a procedure done, you wouldn't be able to tell.

The last couple days at home have been good. Monday was a bit stressful. His button started twisting a bit. It was put in at 9 O'clock position and keeps turning to 10 or 11 o'clock. I guess this is normal, but I wasn't aware of that, so I was almost fainting again on Monday until I talked with a couple different nurses, who assured me that it is OK and sometimes they just do that.  It still gives me the willies a little, but I think I am past the fainting part.

Have I mentioned how incredibly wonderful it is to see Maddox's face?!?!  I love it!! I can see that cherub face now. We haven't seen that for over 3 months.  He is chewing much better now and his voice sounds different. What a difference that n-g tube made.  He isn't eating a whole lot, but that is to be expected.  He has tolerated the tube feedings well yesterday and today, so we are increasing the rate at which he gets the formula. He needs to be up to 90 ml/hour and we are at 70 ml/hour. Tonight I may try the 90 ml/hour. We'll see how brave I am feeling.

I can't even describe how wonderful it is to see him running around without tubing attached to his face or tape on his nose or tubing taped to his shirt. He looks like any other child now when he isn't hooked up to his feeding pump. And I can tell he is enjoying it too. His nose isn 't running anymore. He isn't sneezing and he doesn't have to always be watching out for the tube.  This is a good thing. I wish he didn't have to have any type of feeding tube, but what he has now is good and we will hopefully be rid of it quickly.

Mason is doing well. I had hoped that on Monday they would be so happy to see each other they wouldn't bicker. That lasted for 2 hours in the morning :)  Maddox was still in pain though and was very whiny. Mason was a little nervous about the whole button thing, so that was not a good combination.  It's nice though, because Mason doesn't give Maddox any special treatment because of his feeding tube. Maddox is still just his little brother.  The issue now, is making sure they don't play too rough because Maddox still has up to 2 weeks to be completely healed.

Maddox has pushed himself move since we returned home.  He continues to amaze me. I would still be lying on the couch afraid to move. I wish I could capture the look on his face with the camera when he tries to move a different way. It has so much determination in it.  He has found ways to keep doing what he does without any coaxing or encouragement, and if I even try to help or offer help he becomes very upset.  That strong will of his is serving him well.  When he drops a toy he will try to first pick it up with his toes, if that doesn't work, he squats down while keeping his torso completely upright. Once, I picked up the toy for him and he threw it back down on the ground so he could do it.

He is fearful of being hooked up and disconnected.  He says it doesn't hurt anymore when I hook him up, but he is scared it will. And he is especially fearful when I need to place a gauze bandage around his button.  Hopefully the fear will subside as he heals.  He is way more involved in his cares though. He knows how to clamp and unclamp his tubes, and he flushes his tube with water (squirts water through them with a syringe).  He didn't want to do that as much with the ng tube. And the best part, when I do need to change the one piece of tape he has on him, it doesn't hurt!! There is no trauma, screaming, crying, writhing, nothing.  It takes just a few seconds, and I can use the adhesive remover without any complaints because it is not on his face.

When I first saw Maddox in the recovery room, I kept thinking "What have we done?!?!", and I wondered that throughout the stay at the hospital.  Now that we are home, I feel much better about it and realize this was the best decision for him.

Right now all of Maddox's formula is given to him through his small intestine (jejunem to be exact), in a couple weeks we should be able to start giving him formula through his stomach.  One nice thing about having the 2 different accesses, is we can let air and content out of his stomach if he is feeling ill or bloated much easier than we could with the n-g tube.  And we can feed him through the jejunem so he does not feel nauseated, but still gets all his nutrition.

I am praying things continue to go as well as they are. Part of me is afraid to relax too much, but things are going pretty smoothly at the moment.  He has gained 1 pound in 2 days and he isn't even up to his required caloric intake.

This is long winded I know. I want to record everything though before I forget.  Oh, a prayer request; Tomorrow morning I need to bring Mason to a class by 9:00am. Please pray we can get out the door, that Maddox isn't too fearful of sitting in his carseat and that we don't have any complications with the button or tubes. That is usually when we have troubles. Right as we are leaving.

Thank you for your prayers.  They mean the world to us!