Tuesday, April 13, 2010

Rough Week

So, our first official day of the protocol was last Saturday. We were able to successfully feed Noah through the J-tube at a rate of 85 for the first several days and he was tolerating the meds great. We also started the Miralax for the stool impaction as well. After a few days we had to stop the Miralax as things began moving a little too quickly! Come Thursday, he began retching during the day for unknown reasons but was happy and playful. Thursday night things got worse, he began retching so severely, I wasn't able to run any feeds whatsoever. Friday things continued downward and we took him in for an x-ray to check the placement of the g-j and the location/size of the stool impaction. The x-ray confirmed the correct placement of the tube AND that stool impaction was gone! Good news! However, doesn't really explain the intolerance of his feeds. Despite the protocol instructions of nothing in the stomach, we began to run very low rates of pedialyte and calories through the g-tube and small boluses during the day as well. He still continued retching with everything that went in. We have been communicating with the Dr from New Orleans as well as his pedi and feeding team of what exactly was going on. We are just hoping this is a virus of some sort that needs to run its course and we are trying to keep him hydrated anyway we can in effort to keep him out of the hospital. Last night we were able to run a very low rate (25) through the j-tube and for the first night since Thursday, he slept peacefully. This morning, by huge surprise, he sat and ate a handful of grapes willingly on his own and then proceeded to ask for salad and chicken nuggets at lunch time! Granted, he didn't really actually eat that, but he actually ASKED me for it! We are still keeping our fingers crossed that he just has an intestinal virus and that it will pass that it's not something else brewing, or a reaction to his new meds. I am hoping he is feeling better in the next few days!
I will post more of an update on the rest of boys and pictures soon!


Sue mom to Emily LCDH 1-22-08 said...

Wow Carrie. I just got caught on on your New Orleans visit and couldn't help but think "I wonder if this type of protocol will work with Emily." Depending on how this works out for Noah I might be asking you for contact info. I hope this virus or whatever it is passes quickly so you can get back on track and not have to deal with dehydration. I am so frustrated with the lack of cooperation from our drs on the fedding/stomach/intestinal issues. No one seems to want to do anything; no tests (motility, like I want)studies, or scopes. They must think that one day Emily will just eat on her own....doubtful!
I wish you good luck!

Anonymous said...

I was going to call and ask but thought I would check here first! Hooray that the impaction is gone! Noah jsut likes to change things up a bit you know! I hope that he starts feeling better soon! We ended up taking Abby to urgent care on Sat. Negative strep test...so it was just a virus too. Luckily it passed quickly!

The Miles Family

Weylin and Tori said...

Sorry you had such a rough week! We are praying things will only continue to improve. That is great news that he is asking for food! We miss you guys and hope we can see you sometime soon!

Anonymous said...

Think of you and pray for you all so often!!!! Sorry to hear its been a rough week, I soooo hope he feels better soon!! And you get some rest also! HUGS!!

Jeff Handley said...

So sorry, guys. When Kelly mentioned that you guys were aborting the Hyman plan because it wasn't working, it broke my heart too. I guess if it sounds too good to be true, it probably is.

Really sorry, but we'll keep praying for you guys every night.

With love,