Thursday, February 2, 2012

Cowboy Update

Today my stomach has been hurting. I was like what the heck, what is wrong with me. Then all of the sudden it hit me. I am nervous, really nervous. Today we meet with two of Gatlyn's doctors, one of the nine neonatal doctors and his GI doc. It is a lot of mixed emotions right now and I am ready for some anwsers. I am getting my stuff in order to be prepared and to write things down. Big question is timeline for going home. To go home on feeding tube or not? We obviously know the formula is way better than the breast milk but I will be asking about that as well. The formula is giving him way more calories which is a great thing, he is up to 7lb 11oz!!!!!! I know right? Big boy. Hard to believe he started out as 2lb 6oz.

Excited about this next leg of our journey!

So we met with the doctors this afternoon. Each time we have a "family conference" there are other people in the room as well. Today we took one of Gatlyn's primary nurses with us along with our social worker. Today there were two doctors and a nurse practitioner in there as well. So I assume you can believe how informative these meeting can be. So I am going to do my best to consolidate that info for you. I don't care if people ask questions, but I am not promising I will know the answer. Everything that I am about to say could change at any time. Gat could make huge improvements and his status could change.

Gatlyn has Short Gut Syndrome aka Short Bowel. Therefore the difficulty that lays ahead of him is getting good nutrition. Due to the fact that his small intestine cannot absorb what he is eating good/fast enough. In saying this we were informed of Gatlyn's future for the next 2-3 he will have to be on TPN. He will need a feeding tube as well. It will not be the type of feeding tube he is on now that goes through is nose, but a Gastrostomy Tube (g-tube). It will go through his skin on the stomach directly into the stomach. From there we will give him his feeds either from a continuous drip feed or a bolus feeding. Continuous drip would have to be hooked up to a pump 24/7 and a bolus would be over anywhere from 30 minutes to 3 hours. We are currently working on trying to get Gatlyn to nipple 2 of his feedings a day. He has successfully done 12 mL, which is around a teaspoon. It will take another surgery to get the g-tube in. So we are hoping tomorrow or the beginning of next week that we can get that scheduled. Then we will be looking at home. When I say home I mean pretty much strictly home! With a few trips to the doctors a week.

This isn't what we were hoping for. It is kind of hard to think that it will be our reality. We are struggling to get a grasp on it. It kind of feels like we got the wind knocked out of us in a way.

Consider it pure joy, my brothers, whenever you face 
trials of many kinds, because you know that the 
testing of your faith develops perseverance.
James 1:2-3 

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