Hello there fine folks,
We have been in Children's since Tuesday morning and again, I cannot sing the praises of the staff here enough! We were through emergency and into a room in less then 5 hours.
How's Noah, you ask? Well, he is breaking our heart when he retches and melting our hearts the rest of the time.
Bits of the plan: Going forward the plan is quite conservative. We are going to re-trial the Neocate for 2 months. That means we will probably go home in a week or less, at least that's the thought, subject to change. We will also try some bolus feeds with Noah so that perhaps he won't have to be feed continuously in the day, only over night. There were two reasons for just trying the Neocate without further studies or investigations. One, if Noah has eosinophilic esophagitis then the only solution would be to go on Neocate. So we skip over the invasive test (under general) to an assumed diagnosis. The other was an MRI of the vagus nerve. It was noted after the surgery that his vagus nerve was intact which is all an MRI would show. He would have had to be sedated so that too. We will follow up in a few months with GI in the event Noah doesn't improve on this plan.
Bits of steps. Step one: change to Neocate. Step two: try bolus feeds. Step three: try an anti-emetic like Zofran for nausea. Step four: Noah doesn't get a car when he is 16 because we spent all that money on Neocate - hahaha. Yup, it costs alot but if it helps long term, it will be so worth it.
Bits on retching: Retching is a common problem for children who have had a fundoplication surgery. The retching has been debilitating for Noah who has been having dozens of retching episodes over the course of a day. Jared took a video of Noah retching and if you are a person who is more visual and wants to see to understand better, email me and I'll give you access to the video.
Bits on oral feeds: well, they just aren't happening. Noah does try to drink from a Rubbermaid juice box from time to time but he is unwilling to put any food in his mouth. When I get frustrated, I find myself turned to literature to guide the structure of our oral feeding time. The newest read is "Just Take a Bite: Effective Answers to Food Aversions and Eating Challenges." It reminds me that I am doing my job as a parent well even if Noah doesn't eat "properly" or that he isn't just being difficult as if we're in a power struggle. He has underlying oral-motor issues, perhaps allergies or any number of other possible problems not yet identified. We don't want the bane of our existence to be that "Noah doesn't eat," yet it surrounds us daily - so we work to strike a balance. I try to focus on Noah and to have fun with food and not just focus on eating or putting food in his mouth (I have some great pictures to post later of my green avocado monster who smeared himself head to toe without taking a bite - that was a good feed in my eyes!!) We know from experience with the bottle that forcing only leads to further aversions and problems. I trust myself not to go there again! All we can do is offer food and learn to throw away a lot of unused stuff - how very un-Dutch of us!!
Bits of Gratitude: Noah is gaining weight and his height is catching up too; Noah is taking a full diet on continuous feeds; Noah is still happy despite cutting some nice upper teeth. Noah is having bowel movements on his own (thanks to the prune nectar); Noah is across from the playroom and such gets lots of traffic to watch. Noah's g-tube site looks "beautiful" according to the g-tube nurses - yeah!!! No more burning with silver nitrate for now!!! Thanks for the visits Oma, Geraldine (first as always!!), Meagan (and treats), Pastor Dan (coffee!!) and Julie-Ann (spoiled us with tons of food). We thank you for your prayers, for your emails, facebook messages, comments on our facebook status. I read it all but don't always get to responding too quickly.
Bits for Prayer: That Neocate would help manage Noah's retching. That Noah would sleep a bit better in hospital. That I (Dar) would be able to sleep better. That Dar's wean from the anti-depressants would continue to go well (completely off as of last week and taking lots of vitamin D and B). That Noah would not be experiencing too much pain that we cannot know about. That our meeting with "Family Support for Children with Disabilities" would go well next week (funding for respite etc.) and that they would consider Noah's situation despite his lack of a diagnosis.
Bye for now!
You continue to be in our prayers daily. Thanks for helping us to know how to direct our prayers.ReplyDelete
--Heather Dreise (Erin's sister)