Tuesday, December 18, 2012

GI appointment - turning a corner?

First I want to say, today was crazy! Owen's GI appointment was at 11am. That means that we have to leave our house by 8am, preferably 7:30/45am to make sure we have time for a little bit of traffic. Now, I know 8am doesn't sound incredibly early to most of you. However, our morning routine with medical supplies/pumps/formula/ect gets a little crazy. To have to do it all before 8am makes me a little crazy. And, of course, as I am setting up Owen's backpack, I drop it. This means that his formula bag popped, and formula when EVERYWHERE! The formula ruined his backpack so I had to go get his spare. I had to get a new formula bag fill it with formula and get into a new backpack so we could hook Owen up. It was a crazy morning filled with cranky kids but we made it :)

In the end, the long trip was extremely worth it today! My mom came with me today, which is awesome! The help is always very much appreciated on a trip to Oakland. It seems like it is 3times the amount of work when I go by myself (which I do often). On the way to Oakland I was telling my mom that I will be happy if Owen's weight is the same as it was last month. I always start to worry about his weight gain on the way to Oakland. It's all about his weight. How much did he gain? Why hasn't he been gaining? What's his feeding rate at? How can we help him gain weight? ect. The whole appointment is based off of the number that the scale says when we get there. I was worried because Owen had been struggling with keeping food down. He has been throwing up more often and we have had to lower his feeding rate. In fact, most of this month he has been under his goal feeding rate. That fact coupled with the fact that he was off a day of TPN a week, I was sure he would weigh less then last week.
When we got there the scale was the high point. He stepped on the scale. . . 34.1 lbs! WHAT?!?! That is awesome! He gained over ONE POUND in a month!!!!! yay!!!!
The doctor came in and said, "Ok, he gained a pound. How about we take him off another day of TPN?"
Now this is HUGE! This doctor is the doctor that tried to push us into surgery to lengthen Owen's bowel. Now Owen is weaning off TPN all on his own. She went on to say that it seems he is turning a corner and his body is adapting wonderfully. She made sure to say that this doesn't always happen but Owen was doing great. This makes me so happy. We had been worried about that surgery. We spent countless nights researching, praying, trying to understand the surgery and trying to grasp the fact that he might need it. Then, Stanford told us to stop worrying about it because Owen would never need it. And now, Now Owen is weaning off TPN without surgery. Without extra hospital time. Without unnecessary drugs and scars. It warms my heart to know that Owen is doing great and heading in the right direction.
Not only is he weaning from TPN, his liver numbers are NORMAL. He has been on TPN for 18 months straight (plus 7 more months of it when he was in the NICU) and it is not effecting his liver at all. They said that his liver numbers look like he has never been on TPN. We are so blessed by this.

There are a few other things exciting about this appointment. Owen has a few meds we push via gtube. They are compound meds that come in liquid form. In Sonora, there are no pharmacies that can make compound meds in liquid form. This has been a huge headache for us. We constantly have to drive to Oakdale (an hour away) to have his meds refilled. We have been doing this for 3 years and have just accepted that this is the way it has to be. Just another thing we have to deal with when it comes to living where we do and dealing with what Owen needs on a daily basis. Well, today I met a new GI physicians assistant. I told her that we needed a new prescription for his meds and she asked me where we get them filled. When I told her that pharmacy was an hour from where we live she asked if we would like to have his meds delivered via mail. WHAT?!?! Since when have they had this option and WHY have I never heard of it before? She called the company and they agreed to deliver his meds! YES!!! Awesome! I asked her if the company was just a pharmacy. She said that it was a medical supply company that delivered many supplies. This sparked my interest because we have been struggling with our current medical supply company which delivers Owen's formula, gtube supplies, and formula bags. Some of you may know, we had to drive to Oakland on black friday because we ran out of supplies when the company wouldn't send us any the day before Thanksgiving even though they were a MONTH overdue! Thank God we had extra supplies but we did run out on Thanksgiving and had to pick some up at Oakland Children's Hospital to get through the weekend. She said she would ask this new company if they would be able to take Owen on as a client. They agreed so I get to speak with them tomorrow! She said she has heard wonderful things about them so I am very excited to get them on board!

Overall, this was a wonderful appointment and it makes me excited to see what's to come in the coming months!

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