When I start to feel this way, I usually do a "perspective post check" on myself. (does that make sense?) So I went to my blog from LAST March (we are almost in March!) and well, it was the basically the same health wise. I dont want to lose my gratitude. He is speaking so well, MUCH better than lat March. He has literally caught up in a year! But, with the eating/nissen issues we have been dealing with them for over a year now. We have lost a year of learning to eat properly, learning to like new foods, learning to swallow better, and just catching up in that department to be able to eat everything by mouth one day. He has choked on food for a year. He has had 2 or 3 (my, Ive lost count) stretchings on the nissen and it has barely helped. He still chokes, just not as much, but it has still been a major set back. We even had to take the pump backpack out to wear again because we need the feeding pump during the day. I thought those days were over. I thought he was officially a "pump at night only" kid. He also hasnt gained any weight in a while and I try my best to get in what I can but he can only handle so much at once.
Today I talked with the nurse and she went on to tell me that the upper Gi looked good and that the solid was "slow" going through the nissen, but it went through. I stopped her in mid-sentence and basically told her his nissen NEEDS another stretching and that he CANT eat and just because he had a good moment on the tests doesnt change the fact that he chokes all the time. Like I would really be persuing surgery #14 (lost count of those too) for my kid if he didn't need it? No, I didnt say that last sentence, but that is what I was thinking.
Im NOT trying to rush the gtube out. I'm just wanting him to be able to eat orally. It took two years for him to allow anything near his mouth and now he wants to and I have to tell him no all the time.
Im not complaining. Im so thankful for how far he has come. I do hate to see him suffer while trying to eat.
So, todayI am bummed that I cant do a one year later "perspective post" because they were way too similar, but I am going to thank God that things haven't gotten worse....that is always a wonderful thing!! =0)
Today I talked with the nurse and she went on to tell me that the upper Gi looked good and that the solid was "slow" going through the nissen, but it went through. I stopped her in mid-sentence and basically told her his nissen NEEDS another stretching and that he CANT eat and just because he had a good moment on the tests doesnt change the fact that he chokes all the time. Like I would really be persuing surgery #14 (lost count of those too) for my kid if he didn't need it? No, I didnt say that last sentence, but that is what I was thinking.
Im NOT trying to rush the gtube out. I'm just wanting him to be able to eat orally. It took two years for him to allow anything near his mouth and now he wants to and I have to tell him no all the time.
Im not complaining. Im so thankful for how far he has come. I do hate to see him suffer while trying to eat.
So, todayI am bummed that I cant do a one year later "perspective post" because they were way too similar, but I am going to thank God that things haven't gotten worse....that is always a wonderful thing!! =0)
One of the things I try to remind myself... my feeling angry and sad about all of this doesn't erase my gratitude. I can hear that you are grateful. But it really is okay to be frustrated and worn down and eager for a little more progress.
ReplyDeleteAnd you've earned it. A year (plus) of these feeding issues, on top of everything else you've been through to be a good mama to Camden, is worthy of some complaining and a good cry. Sending you hugs and strength, CDH mama warrior.
Corinne
Mum to Samuel, lcdh survivor, Feb1/11
Aw Devon, I'm sorry. I agree with Corinne. Hoping and praying that soon Camden will be able to eat, I cannot imagine how hard it is for both of you. Lots of Big hugs to you!
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDelete