Well, really the only way to improve Autumn's reflux is to have a surgery called a Nissen Fundoplication. You can google it if you are interested in all the details. ;) It will hopefully prevent her reflux and she will start eating by mouth once again. We were told more and more kids with the Chiari Malformation are having issues with reflux that will not be outgrown so surgery is our best option to make Autumn more comfortable and hopefully move on with our goals for her. We also talked to her ENT about her not tolerating her PMV valve (speaking valve) and he said there could be an obstruction or ganulation in her upper airway. The only was to check is to do a bronch scope that would need to be done in the surgery room. So, we are going to coordinate the GI dr. and ENT to do both of their surgeries/procedures at the same time. If there is some granulation then he can fix it while they are in sugery. If everything looks fine he will drill some holes into her valve and see if that helps her tolerate it better. He did give us some positive thoughts and said most kids like Autumn really turn a corner between 18-24 months of age and start doing much better. He's positive she will get better with weaning and getting her off the vent and trach one day. ;)
Well, after much home searching we have found our home (almost). we have decided to purchase a newly built home in Rockwall. There is one almost down already with a floor plan we like and one that will be completed in March. So, we have our realtor working out the details for us and soon we hope to have a deposit on us a new home. Whoo Hoo!
Better get back to packing. It's sad to be leaving our first home as a family but we are excited about what our future holds on our new journey. We are now living with my parents so I can only get on the internet when we are in town so you may see less posts than before. We are thinking sugery for Autumn next month but will post more when we have the dates.
6 comments:
It sounds like you have a couple of exciting months coming up. If I can be of any help at all please let me know. I'm excited for you to move!
wow, such a busy time for you but all positive things. Best of luck. You will all be in my prayers!!!
Have you guys tried putting her on a feeding pump with a slower rate? Or upping the calorie concentration of her formula so you can reduce the volume? Adding in a gastric motility drug to make sure things weren't building up and causing reflux?
We were told that kids with neuro problems were the most likely to have major complications from the nissen. I'm sure they've talked to you about that, though.
I hope the nissen is the right decision.
hi, my son also has spina bifida. i found your blog on the spina bifida kids blog. my son is almost 4 and has vomited almost every day of his life :( he was recently diagnosed with what is called "eosinophilic esophogitis" -- i don't know if it is at all related to the spina bifida, but it seems to me that a lot of kids with spina bifida also tend to vomit. anyway, a GI doctor can check for "EE" - just something to check into.
Hi Niff, we added Reglan and it did nothing to help. Her gastric emptying study showed she is emptying 2 oz. in 30 mins so motility is good. We have her on a pump feeing 1 oz. every 15 mins. and she is still vomiting that up. She is also at her max with prevacid. She gets 6 oz. of formula to 2 oz. of water right now and we just give the water for the extra fluid she needs. How's it going since Mac had her nissen?
Good luck with your move and thanks for keeping us updated on Autumn. I too have spina bifida and I am always excited to see Autumn do something new.Your son Gage and my daughter Destiny went to CDO together at Crestview. I was the mom with 5 adopted children.
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