I think the best part about our feeding evaluation with KK yesterday was that they had free valet parking.
Does that give you an idea of how our appt went? Ana (our fab speech therapist) went with us and would probably say it wasn't that bad. I on the other hand feel very deflated. I will say that I put way too many expectations into this appt and that it's my fault that I am disappointed. I thought they were going to be the magic bullet that solved all of Caelen's feeding issues and got him eating like a normal healthy child.
Basically in a nut shell here is what they had to say: Caelen is not ready for their feeding program yet. They are afraid of him from a medical standpoint and I wasn't expecting this. I am so used to dealing with the folks at Children's who see kids like Caelen daily and aren't phased by his extensive medical history. I'm not even phased by it anymore, in fact I think he's doing remarkably well, and dare I say normal! So it was disappointing to see a feeding team apprehensive about working with us right now. They don't like that he de-saturated down to 74 when they scared him. But he recovered back to the 80's very quickly (we're talking less than 2 minutes here.) To their credit, there was not a GI Dr there or a cardiologist, rather, the team consisted of a Nurse Practitioner, nutritionist, speech therapist and behaviorist.
Again, I expected more than what their program offers, and assumed the team would have a doctor there to understand his history and assess his condition as it relates to moving forward with feeding. While the Nurse Practitioner tried, it's not her fault that they aren't familiar with his cardiac condition. I guess what baffles me is that their specialty is getting tube fed children to eat. What it really boils down to is that they get tube fed children with behavioral problems to eat, not tube fed children who have tubes as a result of prolonged medical care. Did I mention that KK is part of Hopkins?
I pondered this on the drive home and for the rest of the night and was just so deflated. So I was glad when the speech therapist called today to verify Ana's name for their note, and then asked me if I understood why Caelen isn't ready for their program yet. I got a chance to speak my mind and tell her that I don't understand why KK would take another heart patient and friend of ours into the program, but not us. I told her that they are afraid of Caelen's medical history and that they aren't giving us a chance. Not that it matters, but it made me feel better. We agreed to have another eval in 6 months and take it from there.
Since I have been so negative, allow me to be positive and brag about the fabulousness that is Ana! Since Ana demonstrated the feeding routine for KK, they didn't really have a lot to offer in the way of suggestions for feeding Caelen. They thought that she and we (nice grammar, eh?) are doing everything that we should be doing, and they were impressed with how well Caelen has done in such a short amount of time. Yay for Ana and Caelen! So, we'll just keep plugging away and make our own progress. I would love it if when Caelen is finally "ready" for their program, we don't need it anymore. That would be awesome! Now that's something to pray for ;)
Other than that, the little monkey, who is now called the little monster because of his monster noises is doing well. When I ask him if he's a monster he grunts. So it's cute, he's like a toy. He scoots down the halls making monkey noises when he's really excited (seriously, it sounds like we have a pet monkey), and when he's happy he makes monster noises. He is doing better with standing and walking with assistance, but he's still hesitant to "cruise" along furniture. But he's getting there. I am happy to be planning his 2nd birthday party at home <GIANT SMILE> and my stress for that is do I go with dinosaur theme or Yo Gabba Gabba, lol! These are good problems to have, especially compared to a year ago. And for anyone who might be wondering, yes, I have already ordered the cake, and yes, it will be 3 tiers again ;)
Thank you to all who still keep up with Caelen and my ADD brain. We hope everyone has a great week!
Love, Katye, Martin & Caelen
Lovliest Katye! I'm amazed by your strength and Caelen's. I know it's incredibly frustrating. While I still stand by the notion that your little man had a much more difficult time in the hospital, I can relate on the feeding front. Rosie didn't begin to eat anything, other than paper and cardboard, until October. She was just over 3 years old. She used to vomit 1-4 times a day. I'm happy to report that she is trying foods at every meal now and since her 4th birthday on Wednesday, it's been getting even better. So don't give up. All of this is frustrating, but all of these unknowns are the "WTF's" in raising kids with HLHS. We'll get through this. Keep in mind, we might not know how to physically repair our kids hearts, but we can love them through anything. We'll always understand the smiles, the tears, the fears and the celebrate each second we have with them. That's how we do. And we love you.
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