James into Surgery

Thank you all for diligently praying for James. Yesterday he had a doctor appointment with his primary Pediatrician. We talked to her about his eating problems. She assessed and concluded that James is not eating enough to sustain himself. She suggested that we put the g-tube back in his belly. After talking to the doctor Kristal and I both concluded that not putting the g-tube back in his belly is not an option. The fact is that James is not eating enough, and has never consistently eaten enough since the day he was born. The doctor told us that if he gets sick and has no g-tube to rely upon he will surely end up in the hospital with iv's and everything else. We told the doctor that we are ready to schedule an appointment to put the g-tube back in. She said she was going to schedule it for sometime next week. We are not sure what day or time the surgery will be (I will make keep you all updated via this blog).

There are some good and bad sides to the g-tube. As you probably remember, James had one for the first 3 months of his life. We hated the g-tube because it is uncomfortable and is hard to manage. However, we will be getting a different type of g-tube this time around. He is now old enough to get what they call a Mickey Button. The Mickey Button stays flesh against his skin and cannot move in an out of his belly--unlike the g-tube he had when he was younger. The other g-tube was a long hose that stuck out of his belly about 7 inches or so. It was a hassle and caused great discomfort. They may, at first, have to put in this longer tube until a track is formed (takes about 4 weeks) before they put in the Mickey Button.

The one major positive aspect of the g-tube is that we don't have to worry about James getting dehydrated or malnourished. If he won't eat we simply hook the tubing up to his g-tube and pump it right into his belly. His not eating has been all-consuming for us at the Snowden household, because he has been on the verge of dehydration for such a long time now. We are always concerned that he might not be getting enough to sustain himself. The g-tube will take away these worries.

The doctor said that James' refusal to eat is his way of protecting his airway. Every time James swallows food it goes into his lungs. The reason this did not stop him from eating before was because he was on his muscle relaxing medicine, which numbed his senses. Once we got him off the medicine his senses were heightened and so he could feel the liquid get into his lungs--which is uncomfortable. The doctor said that James has to choose between the discomfort of getting fluid in his lungs or going hungry, and he has chosen to simply go hungry. I feel bad for the little guy--either he eats and is extremely uncomfortable or he doesn't eat and is constantly hungry.

I will list some of the concerns we have:

1. If we put the g-tube in James' body may reject it.

2. James has to have anesthesia for his surgery.

3. Putting the g-tube in is a surgery and there can always be complications with surgery.

4. The doctor told us that many kids stop eating through their mouth altogether after getting the g-tube because they realize that they can feel full without having to eat through their mouth. Sometimes this can cause kids to absolutely hate anything going into their mouths. This reality hit Kristal and I last night. We both realized that James may never eat through his mouth again once we put the g-tube in--he may be dependent upon a g-tube for the rest of his life. This is a hard thing for the both of us to think about.

5. Even though James is getting fluid into his lungs every time he eats we still have to work on feeding him orally. Our doctor told us that if we do not continue to work on his oral feedings now then he will never eat through his mouth--for some reason kids who are not used to oral stimulation reject anything entering their mouths. I said, "Well, isn't he at high risk for pneumonia?" She said, "Yes he is." She then went on to tell us that as bad as pneumonia is, it is a worthy risk to train him to eat orally. She said that we will have to stop if he starts getting pneumonia chronically. But she said that we need to do whatever we can to get him to eat orally so long as he doesn't get chronic pneumonia. Even after we put the g-tube back in his belly, we will still have to work on his oral feeding--so putting the g-tube in is not going to lessen his chances of getting pneumonia.

6. Pray that the surgery does not stunt James' developmental progress. He has been making huge strides developmentally over the past few weeks. Strange, he is happiest when he eats less--he definitely did not inherit this gene from my side of the family--I don't think such a gene even exists in the larger part of the Snowden family. He is super happy and has learned to interact with Kristal and I so much better. Thank the Lord for this, and pray that the surgery doesn't ruin his developmental progress.

Please continue to pray for James. Pray for his surgery. Pray that his body doesn't reject the tube. Pray that he learns to eat--Pray that he will not need to g-tube for the rest of his life.