We had a very simple, straight forward appointment with the GI nurse at
CHOC on Sept. 8th. The drive was a bit crazy with random patches of heavy and
light rain along the way. And some traffic jams here and there. We got
there safe and sound though a bit late.
Whitney got measured and then we went back to the room. The GI Nurse came in quickly. I tube fed Whitney some baby food. Whitney and Cameron played, loudly and mostly nicely, with the hot wheels cars. We just talked about how Whitney is doing and making sure she was still healthy enough to participate in CHOC's intensive inpatient feeding program. Whitney is doing great and admission is still pending on insurance approval. Hoping to know in a couple weeks! We don't want to change anything about Whitney's feeding schedule, calories, medications, or anything before the program.
We talked about the inpatient intensive feeding program a little. It's very strict in general. The dietician decides when to supplement Whitney with formula. They will most likely do it at night time and stop day time feeds if Whitney tolerates that. She has to stay at the hospital the whole time except when she gets a pass to leave which is on the second weekend for only a few hours. She can't go home, seeing friends, or anything like that. Just some where to experience eating meals in different places, and have a little fun. No visitors, but the last week only Daddy and Cameron and possibly Gramma can visit during meal times. But mail, like letters of encouragement and packages of fun things are always welcome! Whitney and I will need lots of motivation and support!
I really hope Whitney will be happy or at least mostly happy there and feel proud of her self. The GI Nurse also asked me to think about some goals for Whitney and how to achieve them. I don't expect Whitney to be tube weaned, but that is my ultimate goal for going through this program. Which means I'm going to try my best to make that happen and continue doing so even after the feeding program. I'm very excited but also very nervous! She said that they've had about 120 kids so far, 70% of the patients in the program have a feeding tube and of those, they have weaned 90%! We will just have to see what Whitney is capable of and how far we can encourage her. If she drinks all her formula by mouth (like pediasure, smoothies, juice, ect.) and gets her nutrition and calories that way, I'll be happy. If she just wants to eat solids and has to be spoon fed and gets her nutrition and calories that way, I'll be happy. If she gets most of her her nutrition and calories during the day time by her mouth and we still have to supplement formula or water at night, I'll be happy. Even if she can only eat one meal a day with her mouth, I'll be happy. I can hardly even image that! This isn't a one time fix all program, we will have to work with Whitney every single day, every mealtime, for a long time until she can fully eat and feed her self enough to grow healthy and strong and be tube weaned.
Anyways, the appointment went great and she will call one more time before our admission into CHOC's feeding program.
Whitney got measured and then we went back to the room. The GI Nurse came in quickly. I tube fed Whitney some baby food. Whitney and Cameron played, loudly and mostly nicely, with the hot wheels cars. We just talked about how Whitney is doing and making sure she was still healthy enough to participate in CHOC's intensive inpatient feeding program. Whitney is doing great and admission is still pending on insurance approval. Hoping to know in a couple weeks! We don't want to change anything about Whitney's feeding schedule, calories, medications, or anything before the program.
We talked about the inpatient intensive feeding program a little. It's very strict in general. The dietician decides when to supplement Whitney with formula. They will most likely do it at night time and stop day time feeds if Whitney tolerates that. She has to stay at the hospital the whole time except when she gets a pass to leave which is on the second weekend for only a few hours. She can't go home, seeing friends, or anything like that. Just some where to experience eating meals in different places, and have a little fun. No visitors, but the last week only Daddy and Cameron and possibly Gramma can visit during meal times. But mail, like letters of encouragement and packages of fun things are always welcome! Whitney and I will need lots of motivation and support!
I really hope Whitney will be happy or at least mostly happy there and feel proud of her self. The GI Nurse also asked me to think about some goals for Whitney and how to achieve them. I don't expect Whitney to be tube weaned, but that is my ultimate goal for going through this program. Which means I'm going to try my best to make that happen and continue doing so even after the feeding program. I'm very excited but also very nervous! She said that they've had about 120 kids so far, 70% of the patients in the program have a feeding tube and of those, they have weaned 90%! We will just have to see what Whitney is capable of and how far we can encourage her. If she drinks all her formula by mouth (like pediasure, smoothies, juice, ect.) and gets her nutrition and calories that way, I'll be happy. If she just wants to eat solids and has to be spoon fed and gets her nutrition and calories that way, I'll be happy. If she gets most of her her nutrition and calories during the day time by her mouth and we still have to supplement formula or water at night, I'll be happy. Even if she can only eat one meal a day with her mouth, I'll be happy. I can hardly even image that! This isn't a one time fix all program, we will have to work with Whitney every single day, every mealtime, for a long time until she can fully eat and feed her self enough to grow healthy and strong and be tube weaned.
Anyways, the appointment went great and she will call one more time before our admission into CHOC's feeding program.
Great goals! I love that you will be happy with any improvements! Go Whitney! You will do awesome! You are both so amazing for all your hard work and positive outlook! Alicia you are the most amazing mom ever! Whitney is blessed to have you!
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