Sunday, June 5, 2016

Swallow Study - June 5th, 2016

This morning I called to see how the rest of your night/morning went and she said it went much better than last night when I called. She said that you 35 ml, then 40 ml, and then 25 ml. For the 25 ml feeding, you had one quick episode, and she said that she could tell you were getting tired.
This morning when I came and fed you at 9 you took 20 ml with no episodes. I feel like I am extra careful at feeding you to make sure that you have no episodes.When the nurses feed you (I don't want to say they aren't as careful) I feel like they may have different techniques. My goal (and speech said this is her goal as well) is to get you to stop having episodes, not to eat as much as you can.
The doctors rounded and said that if you didn't go to the bathroom to give you another suppository, but she felt that we shouldn't give it to you if we didn't have to. She doesn't want your body depending on them. We decided to hold off on it and wait to see if you went during the day, and if you didn't, night shift would give you one. Luckily you went between your noon and 3 pm care. Other than that, she said that she thought it would be a good idea to rule out anything by doing the swallow study. I asked her how long it would take once they put in orders and she said that it should be done tomorrow. She said it is possible it would be Tuesday if they were backed up from the weekend. From there, we would come up with a plan of what to do next. She told me that if we saw something wrong, not to look at it as a step back, but look at it as a chance for you to grow and mature.
For your noon feed you were doing very good. Of course I had to tell one of the nurses this morning that you usually have no episodes for me, and only for the nurses. So when I was feeding you at noon you were very squirmy (I am assuming you were working on a poop) and bearing down. I kept trying to pull the bottle out when I saw you bearing down because I know that can cause episodes. Towards the end of our 20 minutes, you took a few sucks and then started to bear down and then you coughed and threw everything you just drank up. Because of that, you had an episode. The nurse said it was just because you were throwing up. But, of course I had to say something to a nurse this morning about you not having episodes for me. Lesson learned.
Daddy came for a bit to see you and you kept focusing on him. I love seeing you look at him and I can't wait to see you guys together when you come home. You guys are going to have an amazing bond.
The nurses called me to let me know how you did at 3 and 6 pm. I usually call but for some reason I haven't been getting through so they said they would call me. I really liked what they said. They said that at 3 you took 20 ml with no episodes and at 6 they could tell you were really tired after they changed your diaper so they jut dropped it by gravity. I don't need nurses pushing you when you are tired to see if you will take anything. I need them to realize that you are tired, and that it wouldn't be good to feed you because if you are tired, you are more likely to have an episode.
Tomorrow we have our CPR and NG tube training class. I am a little nervous about it, but I know we can do it. It is amazing what you will do when it comes to your own child. I would never of imagined me being able to stick a tube down someone's nose into their belly. You do what you have to do when it is your child. I would do anything for you. Daddy is definitely nervous, but I know he will do fine.
Daddy and I will be there all day with you tomorrow. We hope that you get to have the swallow study done so we can see what is going on and so that we can come up with a plan. It has been a very emotional weekend for me knowing that we have been through so much and we still may have weeks ahead of us depending on what the swallow study shows. I know it is best for you to stay in the hospital until you are better, but it's just hard not having you at home. We love you and we hope you do great tonight. We will see you in the morning buddy!!

Please pray that the swallow study goes well and that we can come up with a new plan that helps Mason get better. Thank you so much for all of your continued support and prayers!