Trey threw his first public tantrum in the airport today. I guess I should state FULL BLOWN tantrum. I knew it would happen at some point but you are never ready for it. I have to say I am pretty proud of how I handled myself. I just took lots of deep breaths and tried to stay calm. Everyone around us was pretty understanding. We all decided he was doing what we all wanted to do at that point but couldn't.
So here is the update and conclusion from our procedures this week and our plan of attack in the near future...
We met with our GI specialist this morning before our flight. Trey's weight was 19lbs 4 ounces a drop from his weight on Saturday of 19lbs 7 ounces. (His average weight gain they say should be approx 6 ounces a month). After looking at his trend since our last visits and how he is growing weight wise the Dr. feels like it is not enough. He basically has plateaued in weight. He is improving for height and head circumference which is a good sign but not enough in weight gain for what they are comfortable with. This is likely due to Trey's lack of ability to tolerate a goal of 29 ounces of formula a day due to his vomiting or severe fussiness while his tube feedings are infusing.
So why is Trey still having issues with vomiting and not able to tolerate his feeds and not greatly improving with his oral aversion is the question. Well for one the gastric emptying test that he had on Monday showed that he doesn't have a delayed response during the time the test was done but it DID show with just 2 ounces in his belly he refluxed 5 times in that short period. So while we normally give 7 ounce boluses is he refluxing more than 20 times? Also with the NG tube in place, the stomach is always slightly open so that could be making his reflux worse too. And even though Trey doesn't act like the tube bothers him how much it is affecting his willingness to eat could also be a factor.
The team feels that in order for Trey to really began to overcome his oral aversion and feel safe with eating we must fully get his reflux under control. The next step to hopefully reach that goal is having a gastrostomy tube (g-tube) placed. I have been dragging my feet with agreeing to this decision but we are not making the progress we would like with our current regime.
So for the non medical people who are reading this blog the g-tube is usually used for children who require tube feedings over extended period. This what is what it usually looks like...
The tube will be inserted through Trey's abdominal wall and into this stomach.
And this is where we will continue to feed him formula through. Trey will require surgery for the tube placement and they said plan on being hospitalized for 3 days. Interventional radiology will be placing the tube with the assistance of peds sedation team. Trey's surgery will be taking place on April 6th at 1:00pm. We are thankful that daddy will be able to be with us.We are hoping that after surgery things will improve with time and his severe reflux will resolve. I am not willing to address worse case scenario at this point because I don't even want to think negatively right now.
As I sit here tonight reflecting on today I of course question myself as a mother and a nurse. How did we get to this point? What did I or didn't I do for my child. What could I have done differently for Trey to prevent this? But I guess I could make myself crazy if I think like that. So I am praying for positive thinking and reassurance that this is a path we are destined to go on right now and things will eventually work out for Trey. I know the Lord will not place more on this family then we can handle. I am blessed and encouraged when I look at little Trey tonight running around laughing like a normal 15 month old. We still have so much to be thankful for.
We will keep you updated as the surgery date gets closer.
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