Thursday, December 13, 2007

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.


Anonymous said...

It is very helpful that you keep us posted about the specifics of what to pray about. Nothing is too small OR too large, and it helps us to keep posted on the needs of James and your family. We cannot truly know them otherwise, as everyone's life is unique. We are fearfully and wonderfully made! And James is a beauty! Love, Kathy for all the Bacons!

Emma said...

Jimmy & Kristal:

We are all praying for you both and for James. We don't have any idea what it is like to go through what you are going through now, but you have been such an encouragement to us. We are blessed to have a brother and a sister who love each other so much and love our nephew like you do. It is a clear picture of the grace and love of Christ and an encouragement to us daily! We will continue to pray for "Baby Zue's" needs and comfort and for the grace and stregnth for you both to care for him! We love you all!
Luke and Amy, Emma & Adam

Kristal said...

kathy you are priceless, thank you for your commited diligent prayers!

Amy, when you referred to James as "Baby Zue" it brought back some really vivid memories. I have not heard that name in a very long while. I was reminded of how far James has come. How far we all have come. This has been a very "thick" time in our lives. I was encouraged when I read your post and you used his nick name "Baby Zue". I was encouraged by the feelings that accompanied that sweet little nick name. Baby Zue could possibly not be with us today...but he is. Baby Zue endured severe life-threatening seizures....but not anymore. Baby Zue couldn't breathe....but now he laughs and it sounds like someone stepped on a squeaky toy. Baby Zue hung out at the NICU for a while....but now he snuggles in my arms. I love Baby Zue! I love the feelings i get when i hear "Baby Zue" because I could possibly not have those feelings today.....but I do!! I love the Lord, he gave me BABY JAMES! He gave us all BABY JAMES!

Praise the Lord for sweet Baby Zue!

Jessy said...

you were made to be his mother, Krystal...that is very apparent. We, in the midwest (all my friends and church) are praying for your son. May it please the Lord to show Himself brilliant and kind and merciful and loving and tender-hearted, and ultimately: faithful, as those whom He's given great abilities work on your baby's little body.

Lu said...

Hi, wwe all are pleading with the Lord that so much more will happen with James that this will be just a short setback, and that soon he will be doing all kinds of new things. We love you both, and miss the study.

Love Jon and Lucille

Anonymous said...

I found your site through Jessy Phelps. You are in my prayers. I can relate to your situation - my brother & sister in-law have a 4 month old baby who was born with a muscle defect & has had a feeding tube from day one. He has already outlived his lifespan according to the doctors! God is great though & every day they (you!) have with them is a gift from God.
Becky Hadley

Anonymous said...

I found your site through Jessy Phelps. You are in my prayers. I can relate to your situation - my brother & sister in-law have a 4 month old baby who was born with a muscle defect & has had a feeding tube from day one. He has already outlived his lifespan according to the doctors! God is great though & every day they (and you!) have with them is a gift from God.
Becky Hadley