STL trip update

The trip back up to STL was amazing! We didn’t have to stop once! Logan slept the entire way. Which was a good thing, because poor baby has been so tired lately.

Wednesday at 9am we showed up to Radiology at STL Children’s Hospital. They were all so incredibly nice. It was after 10am by the time they started the upper GI, but Logan was napping so it worked out well. If he had not been napping I would have been one angry momma.

The nurse put some flavoring in the barium and warmed it up. Logan drank about an ounce altogether. The doctor said his anatomy looked good and his swallowing was really good! That was very surprising to us because he has started choking more lately. But they watched him swallow in several different positions and he did very good. However, once he figured out the barium wasn’t formula he had a mini meltdown. It was very sad because he wouldn’t stop crying but as soon as he tasted his normal formula he calmed down quickly. After a bit, the doctor came back and looked for signs of reflux. We watched for several minutes, moving Logan a few times, and concluding that there was no reflux taking place.

From that appointment we went back to the hotel room, ordered Applebee’s for lunch, and prepared to meet with the surgeon. We had already contacted Dr Connolly and verified the surgeon we were placed with has worked on SMA babies and she felt he was an excellent choice.

The surgeon and his staff were very nice too! He listened to our concerns and answered all our questions. Although most of our questions seemed to be more for anesthesia. He also took into account the way of life we want for Logan and was very understanding. We decided to move forward with a G-tube with button performed laparoscopically, no Nissen. The surgeon felt that was too invasive for Logan and was not necessarily needed. If reflux starts to become an issue we can look at adding Zantac or another aid to help. He personally does not feel this will become a problem though. We scheduled the surgery for January 31st.

We walked out of that appointment and I’m pretty sure my brains were on the wall of that room. The information we took in was crazy and then we were going to meet with an anesthesiologist. 

This was the appointment I was most nervous for. I’m not so concerned with the surgery itself as I am the recovery afterwards. We first met with the RN. She took our information and explained we would see the Dr. However, she went over our questions with us. She told us that they would probably use propofol since it wears off within a few hours. She said they wouldn’t use the gas as it could irritate his lungs. And then we met the Dr…

I wish we would have never met with the RN. All she did was confuse us. The anesthesiologist said he would suggest we use gas as the effects wear off within 15-20 min. Logan will have to be intubated, but instead of it breathing for him, they can used a pressurized setting. This setting would allow him to breath normally but if he was starting to take shallow breaths it would help him take deeper ones. He suggested to not use a spinal block but to use a tap that would deliver the anesthetic in the 2nd-3rd muscle tissue layer. It would have a less paralyzing effect. The surgeon would also use a local anesthetic in the places he was working on.  He also said we should stay away from narcotics. Logan would be extubated as soon as possible. We did agree for them to use a bipap in the event he starts having some respiratory distress. However, the goal would be for him to be removed from the bipap as soon as he was stable enough too

We do have a written note from the anesthesiologist thank goodness. Now, the part that I absolutely hate. We don’t know who the anesthesia team will be. We know they will most likely give us the Sr anesthesiologist, but we don’t know if that will be the doctor we met with or not. It is extremely frustrating. We talked to our support team immediately after that appointment and they all agreed if we go in for surgery, have a different anesthesiologist whom we don’t agree with how he wants to do things, we just call off the surgery. I hate the idea of that, but I’m also glad we aren’t tied down to it.

I think I have cried more in the past 48 hours than I have in the past several weeks. The idea that this is really happening is devastating. His little tummy is so perfect and I know the tube won’t change the way I look at him. It will just take a little getting used to and then we will enter a new norm. But until then, it just hurts. It feels like we are giving into SMA. I know we aren’t, but I just can’t help but feel that way.

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