Posted By Posting
Jul 01, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Quinn Update, Getting to the bottom (yeah right!)
I moved in to the Ronald McDonald house yesterday so now I get computer access, but I am pretty much always with Quinn anyways. Well, the doctor came in and talked to me yesterday and answered all my questions. It's a lot to update so I'll try to skip the boring/irrelevant stuff. Basically, they put her on a 72 hour calorie count because he felt that maybe the reason why she lost so much weight and became so dehydrated was because during our weaning process, she just wasn't taking in as much as I thought she was. Well, I told him that she can eat as much as she wants and she will still get diarrhea so he basically just wants to see for himself. unfortunately, with Quinn being so dehydrated and deprived of food for so long, her first poop was normal, her second poop was mixed and I am unaware of her last poop because the nurses didn't communicate properly or if she had more than three poops. She did not poop all day today and normally, I would have expected at least two or three diarrhea diapers. UGH!!!! But they did say that she is most definitely not drinking enough fluids. How could I have missed that? Maybe I wasn't paying enough attention... she seems to be eating a lot here, but they are saying that she is not eating that much nutrients. Anyways, we will know when the calorie count is finished. Her saturations have been so incredibly stable, I suppose it is a good thing. Except today, she had a very tiny bit of what I like to call an "off" day. Then today, right before I left for the night, her baseline oxygen saturation dropped from 98 to 94!!! I wonder if tonight is the night that they will finally catch her apneas. I hope so. I know that sounds strange, but she breathes much different at home and if she can just give them a glimpse of what it is like for us, maybe they will try to help me out some. I will know more about the game plan tomorrow. She seems to be doing great. she is playing around, being a normal two year old who does not like to sit in the hospital and causing me major stress but, what else is new??? I truly have a feeling that unless she needs to be put on o2 tonight that we will probably leave knowing the things we already know, with no answers and more questions. I was thinking about spending the night tonight to make sure that the nurses stay on their toes with her saturations, but I think that if it were serious, they would do something about it. Well, that's all folks. no more answers, no more news. *PS. My sister is probably going into labor, she lost her plug a few days ago and is a finger tip dilated and leaking a little amniotic fluid. No pain or anything. Please, pray that she does ok and that her baby is healthy. She is due anyways, but that doesn't always garuntee a healthy baby. They are also saying that the baby is so big that she will very, very likely need a c-section. We do not know the sex yet either so that's exciting and hopefully Q will be home soon to see her new cousin-Sarah
Jul 01, 2008
amber f
Sarah~ Thank you for taking the time to update. I really hope you get answers. I will be thinking of you! I am also hoping your sis has a healthy baby. Please update when you can I am following your posts.
Jul 01, 2008
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Thanks for the update Sarah. I have been watching for you! Keep staying on top of those doctors ;-) I hope everything goes well for your sister too!
Jul 01, 2008
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. Glad you finally got some answers. I am so sorry everythingis hard for you. Did you have that big drink I suggested yet? I am praying for a healthy baby for your sis. My sister had a baby last Monday! (She was a moose...nearly nine pounds!!)
Jul 01, 2008
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I hate to hope for a bad night, but I truly hoped that she performed for the doctors last night. I can't imagine how frustrated you must be. I doubt you "overlooked" her getting enough nutrition - you're the most on the ball mom I know. Something is going on to dehydrate her like that - I hope the doctors can figure it out - NOW. Sending lots of prayers and thoughts your way.
Jul 01, 2008
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Sarah, I hope the night went well. I am glad you were able to get into the Ronald McDonald house. We're still thinking and praying for you guys. I hope your sisters labor and delivery goes well. Let us know what she has! Maybe a new baby will be a good distraction for you and Quinn to help you move past all this.
Check with your
doctor first!