Well, today was good and bad. Good news first, her port flushed and drew back blood without having to use another round of TPA!!! Yay!! They were able to get her blood work and it only required the one poke!! Yay!!! Bad news, we had our GI appointment today to address or concerns with the persistent vomiting. Sawyer is going to need another surgery because she is just not stable with all of the vomiting. They gave us two options to chose from. Option 1- the GJ tube. Normally this doesnt require full surgery to do but because Sawyer cant have the anesthesia they use just to sedate other patients, she will have to have full anesthesia, like they would for a surgery. The pros to this procedure, no cutting into her skin, no change in her anatomy and its less invasive and it only requires one day in the hospital. The cons, she would have to have this procedure every 3-6 months to have the button replaced (which is a hospital stay EVERYTIME), she would have to be hooked up to her pump 22 hours a day on continuous feeds, it isnt a complete fix so she may need the bigger surgery anyways. Option 2- the Nissen fundoplication. This procedure they go in and take a part of her stomach to create a new sphincter at the top of the stomach. The pros, its one surgery and its done, it wont have to be redone, she will still get bolus feeds so she will only be on the pump for 3 hours out of the day, it makes it so she cannot throw up so it will most likely fix our issue and it will fall out as she gets older so its not necessarily permanent. The cons, it is surgery but they can do it laparoscopically so it will just be the same three small incisions that she had for her g-tube (pro), it changes her anatomy which can cause other complications, its a longer hospital stay but its just one and it carries all the risks of surgery, bleeding, infection, and having to open her up completely. We are in a really tough spot. They are giving us a day or two to think it over but they want to get her scheduled within the next couple weeks so she has time to heal before our next trip to Pittsburgh in November. Please pray for guidance and for peace through this. Its such a hard decision to decide what type of pain youre going to put your kid through but at the same time you want to make the best decision for her life. I dont want to compromise her quality of life by having her hooked up to her pump all the time, but I am terrified to take the risks of a major surgery. Ahhhh!! Please pray. We really need it. In other news, the zoo was a blast and we had a couple of amazing hours worry free before her appointments. We live for those moments. It is the only thing that helps us move on some days! This video is from this morning after we asked Sawyer what she dreamt about. She was so talkative all day! Thanks for the support friends! We love you all!!
Posted on: Tue, 21 Oct 2014 02:04:08 +0000
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