Tuesday, March 31, 2009

Yesterday, I sent out the exciting news about his oxygen. There are big changes ahead. Not only are they telling me to try him off oxygen, Hunter's pediatrician wants the feeding tube to come out too. I know...jaw dropping! Here's the master plan...

Hunter hasn't been doing any better with his feeding tube. Things have stayed the same. He is not taking in the calories that he should be orally. This is why the feeding tube has been needed for this long. But, Hunter is getting stronger. The feeding tube is held on by clear like tape called tegaderm. Hunter has learned how to pull the tape off his face, pull out his feeding tube, pull his nasal cannula (for oxygen) off his face, and the round bandaid like tabs that hold the cannula on his face. I can not keep anything on his face. Needless to say, I am inserting NG (feeding) tubes 3-4 times a day. For anyone that knows anything about inserting a feeding tube, it's not fun! It's especially not fun to do it on babies. It's a complete nightmare to insert one on your own baby. I cry every time I have to do it. Seriously! I have tears rolling down my face. When he was younger, I only had to insert the feeding tube once every two weeks or so. But, not any longer. It is more difficult now. The days are becoming so frustrating.

So, to go more in depth...Hunter's feeding schedule consists of 4 feeds throughout the day and a continous feed at night using a feeding pump. This pumps formula into Hunter through the feeding tube for 7 hours overnight. It's a computerized system. I just have to set the settings on it. Using simple mathematics, I tell it how much to give to Hunter and the time to give it. I press start and it does it's job. I go to sleep, wake up in the morning, the bag that once held the formula is empty and Hunter is content.

The doctor is looking at all angles of Hunter's appetite.

The doctor wants to know if Hunter is not eating because he's just not hungry. Every couple hours throughout the day he gets food. At night, he is continously getting food. So, OUT THE FEEDING TUBE GOES. Let's see if he gets hungry! We are going to do this until Friday. I will see his pediatrician on Friday.

Also, Hunter was suppose to go in for a swallow study last week. That was rescheduled for this week. We are going to see if something is going on internally which is creating a feeding problem.

If Hunter still refuses to eat, the swallow study comes back good, and then the doctor can rule that he has an oral aversion and will schedule Hunter to have a "G" tube placed. A "G" tube is a surgically placed feeding tube into Hunter's abdomen. This is last resort. We are really trying to figure out something else first. If Hunter has an oral aversion, all we can do is continue to introduce food to Hunter, and work with occupational therapy.

An oral aversion can be caused my many things. One of those things being that Hunter was on a ventilator and oscillator for so long. This is all through the mouth. The tape to hold the ventilator is around the mouth. When he was a tiny micro preemie in the NICU, this could have sent a negative signal to the brain. The negative signal being that all things in and around the mouth are bad. Therefore, creating an oral aversion. The ventilator and oscillator can not be fun! The NICU was very careful to avoid this, but sometimes it can happen and we were warned about it. So, this would not shock me. But, I want to hold on to the hope that Hunter is just not hungry. Allowing him to get hungry throughout the night, might make him take more food during the day.

Again, Let's pray for Hunter