Becoming a 'tubie' Mom

We met with Greyson's GI surgeon this week to discuss putting his g-tube in. We are looking at the g-tube for his future feeding tube over the NG tube. We've had the NG tube twice now. The first was in the NICU when he would just get too tuckered to finish a bottle and the second was our during our hospital stay in Madison earlier in March. The NG tube is such a temporary feeding tube.. and we know he will need help with feeding at some point down the road. It's a "when", not an "if". The NG tube is invasive to me. I was an emotional mess in the NICU after having Grey, and we had the most wonderful nurses in the NICU until the day we got the NG tube. There was no warning.. no heads up of what she was about to do. I had my back turned to him, washing his bottles, when I heard him let out this awful yell. I can't un-hear that noise. It was horrendous. She assured me he was ok, it was not painful for him just uncomfortable. I honestly didn't care, I was just crying so hard and told her I wanted a new nurse. When they told us we were getting the NG tube in Madison, my heart dropped. I didn't want to leave Greyson without his Mama, but I couldn't hear that noise again. Adam stayed but had to leave the room too. We huddled in the hallway together and just waited until the nurse let us know the NG tube was all set.

The g-tube is more of a permanent option. It needs to be changed every 3 months, rather than every month like the NG tube. The only place to get the NG changed here in Green Bay is our local ER. I really don't want to take my son to the ER every month and have to listen to that heart-breaking noise. The g-tube is surgery. He will need to be put under anesthesia. I'm terrified. I keep thinking of my son's sweet little belly.. how once that g-tube is placed, I will never see his bare belly without it again. I know we are making the right decision for our family, but I'm still sad about it. I'm sad that we have to even need to have this conversation in the first damn place. It's not fair. He will need to get the g-tube because at some point in our journey, swallowing will become too difficult for him. A lot of children with tay-sachs are at risk for aspiration and often develop pneumonia because of those aspirations. He can still have what they call micro-aspirations with his saliva but we need him to be able to eat, so the g-tube will eventually be how we will feed our baby. It just pisses me off that we need to worry about this. He should be running around, starting to say more and more words, he should be playing at the park.

Next week we meet with our neurologist again to have our second EEG done. We had one done in January at Children's in Milwaukee. Everything on that EEG came back normal. This one will more than likely show that his seizures have started. They don't last long but they are frequent during the day. His little eyes flutter and his arm sticks up and shakes. Sometimes at night he has what our neuro thinks is a "tonic seizure" where his arms both stiffen, he turns to the right and just lets out a wail. He typically falls right back to sleep after, but it's another thing that is just not fair about this disease. It's so hard to see him struggle and know that I can't take it away. I can't FIX this. I would do anything to trade places with him so that he can experience life and everything it has to offer. I just feel incredibly frustrated with seeing him regress. He is still eating everything by mouth and he is exceeding the nutritionists recommendations for volume of his pediasure. He gained weight too since our stay in the hospital in Madison.

On a very happy note we have some visitors coming in the next few weeks that I'm so excited for. Greyson is such a loved little boy and I'm really thankful for our family and friends. I don't think Adam or I could do this without the help and support we've been given. I hope this blog helps get our story out and allows our friends and family to know what we are going through but also to share Greyson's story and his sweet little life. He's so loved and it truly shows.

Another happy note- Adam is crushing his two classes right now. He is finished with this semester Tuesday and despite getting slapped in the face with Greyson's diagnosis in the middle of the semester, he has still kicked-ass. I'm so proud of the work he has been putting in. It's hard to stay focused and study, but he's doing such a great job with his grades. He's going to make such an amazing nurse when the time comes. He is a hard-worker who gets fixated when he is determined. He won't stop until he finishes what he needs to do, even if he's tired or had enough.

We have some fun things planned for summer with Grey. We are hoping to take him to a local baseball game.. not that he will really care about the game but it will be a fun activity for all of us and outside. He loves being outside. We also have this Dino Expo that we are going to! He's been kind of forced into loving dinos because I seem to gravitate towards everything dino, but that's ok :) We have a trip back home planned for my Grandmother's memorial and seeing my family. We are also getting some more family photos done and I can't wait.

xoxo,

Kim