Today we had our speech appointment and you weren't able to eat for an hour before your appointment. Your appointment was at 12:30 and your last feed was at 9 am. By the time we got to the room, you were screaming because you were so hungry. We had to undress you so that they could weigh you and they also did a length. You weigh 8 lb., 14 oz. You are 18 inches long. The nurse said that you would be seeing four different doctors. We would be seeing two for the first half of the appointment and then the other two the second half of the appointment. After that, they would all talk about what they thought the next steps would be, and then one of them would come back and talk to us.
The first half of the appointment we saw an OT and SLP. OT took a look at you and gave us an information packet on what you should be doing at your age. It also gave us some things that we can work on with you. The SLP watched us feed you. She listened to you as you drank, and asked us a bunch of questions. We told her how well you have been doing, and she said that we were doing a wonderful job with you. She recommended that we increase your bottle feed to 25 ml instead of 20 ml, and if you take all your feeds at 25 ml for four days, then we can go up to 30 ml which is 1 whole ounce! We are getting closer and closer every day! After they were finished, they told us that a dietician and attending would come talk with us next.
Again, the attending and dietician asked us a bunch of questions. We told the dietician that you seemed to be getting hungry an hour before your feeds. We told him that the pediatrician recommended that we go from 80 ml to 85 ml to 90 ml over a period of time. The dietician recommended that we even went up to 95 ml after four days of 90 ml. Other than that, he said that he was doing well. We spoke with the attending about your episode the other day. We told her that the pediatrician said that he didn't think that you needed to be on a stronger reflux med, but that he wanted us to make sure that speech thought the same. The attending asked us more questions and said that she wanted you on Prilosec and to stop the Zantac. She said that if we didn't see an improvement in a week to call. She also said that if you had another episode like you did before, to immediately call the pediatrician and possibly 911. Hopefully the Prilosec helps you and stops you from gagging.
After we spoke with both sets of specialists, we sat there and did the rest of your feed. The attending came back and went over all of the recommendations with us. She also said that she wanted to let us know that a discussion about having a g-tube was had. She said that it will be a long road with the NG tube and thought it would be best for you to have the g-tube instead. However, speech thought otherwise. Speech said that you were doing very well and didn't think that you would need the g-tube at all. Thank goodness. I am not even sure I would of wanted you to have the g-tube. It is another surgery, and there are chances of infection around the surgical site. I hope that you continue to do well with your feeds, and you keep advancing. Otherwise I think that at the next appointment they will talk about it again. That isn't something that we want to go through. You already have had enough going on, and will have more going on in the future.
They want to see you again in 4 weeks. Since they are so backed up, they have to schedule us for the first available, and then put us on a list for cancellation. Right now, your appointment is scheduled for September 13th.
We love you and are so happy with how well you are doing. You continue to amaze us every day. You are so strong!!
Please pray that Mason continues to advance with his feeds. We are praying that we will not have to go through another surgery for the g-tube. Also, please pray that the Prilosec helps his reflux better than the Zantac. Thank you for your continued prayers for Mason.
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