Posted By Posting
Jun 29, 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
The Scoop On Quinn From Her Mama
It's midnight and I decided to come home. Q is in the hospital sleeping. I didn't get enough sleep last night and so I was cranky today and Quinn was annoying me. The worst thing about being in the hospital right now is that Quinn is totally fine, the way she is acting anyways. My mom says that it's because of all that she has been through she doesn't want life to slow her down. But she definitely keeps me on my toes. Well, this will be long because I'm going to recap on everything and then update. We got to the ER in Loma Linda and the ER doctor comes in there to have a look at her and sees that she is all up and walking around and doing fine. She pages the ER doc on call who wants to send her home with carafate to coat the lining of her stomach because he said that the bleed was from irritation. The ER doc tells me that since she is acting fine, she doesn't feel the need to run blood work since it will likely be good. Well, I know Quinn better than that so I told her that I would like for her to run the blood work just to check since we had come all the way down there. So she runs the blood work (which is really hard on me because Quinn had NO veins and they blew a few of them. She was poked so many times.) The doc comes back and tells me that she is surprised that Quinn is as sick as the bloodwork says she is (I wasn't) she said that given her bloodwork, she basically won herself an admit. She was very dehydrated, her c02 levels were much lower than normal and her blood sugars were dangerously low. But she was running around as if there was nothing wrong. Gotta love that kid! She red flagged a few other things but I can't remember them now. So Q got admitted to the GI team yesterday. It took FOREVER for them to open up a room for us. They gave her tummy a break for almost 24 hours and only ran IV fluids. Her bleeding stopped last night so that is good news. The GI team who talked to me in the ER told me that they were going to do a GI series on her, give her tummy a break, start her on a totally elemental formula that is already broken down and then slowly work her feeds up from the 20ML that she was tolerating. Well, today, they started her feeds on PediaSure, which is what she was taking before (not elemental) and they started at 50ML/hr, which is not what we discussed. I missed the rounds since they did them late in the morning and the doctor didn't feel the need to come and get me I guess. So I posted a bunch of questions above her crib for all of them to see. The nurses all said that it was a great idea. They also took her blood this morning and didn't give me the results to that!!! i'm not cool with this so far!!! Anyways, now, I do not know what the plan of action is, but that question is also written on the list above her crib. They did take X-rays of her abdomen. The ones from the other hospital showed that she had lots of air throughout her intestines. I do not know the results of the new ones. I do know that right now they are thinking that it was just a virus that wreaked havoc on her GI system. She lost *four pounds* and is back down to 25lbs.! she is 2 1/2 years old. They started her feeds at 50ml an hour. after her first feed, we pulled her residuals and the whole feed was still in her tummy. They started her second feed and the nurse told me that if after one hour we are still getting that amount, she would page the GI doctor. After an hour, we pulled her residuals again and she only had 70Ml in her tummy. she digested it, but that is still moving quite slowly. It appears that it all stayed in her tummy and then decided to digest after about four hours. Anyways, I calculated if they send her home on that, that would mean 19 hours on the pump. If she were to be allowed oral feeds, she likely would not tolerate more than a chip or two and 1/2 an ounce of liquid for a meal. Her pee is starting to turn dark again. I hope they plan on taking her CBC every single morning because I am pretty positive that she will turn dehydrated again. She has not pooped in about 48 hours. I honestly don't expect diarrhea u ntil they turn up the pump feeds and give her oral meals. i think this is all motility issues that they should really take seriously. So far, no more bleeding so that is good. I just feel like i could be doing this at home if they are only doing this to see what rate she can tolerate. i can tell them all that, but what I would like is for her to be able to eat orally without having to suffer the consequences, loose weight and get dehydrated. I don't want to be back there for this crap. And I would really like for them to figure her digestive issues out. I do not know what the answer for her is, but I just wish they could let me know their thoughts before making a final decision for her and that is what I will try to make clear for them tomorrow or whenever I see them again. I was talking with Kat and jessica about how it would be beneficial for all of her doctors to get together and discuss things. I don't know how hard it would be to set that up, though, or if I would be asking too much. My mom told me to contact a bunch of people like Oprah or Mystery diagnosis because they know people, but sometimes I just want them to get her well and not have to deal with the what if's and crazy things. There are people out there who are far worse off than her. There has to be an answer out there for her, but I think what matters is getting her well enough for her to come home and stay home. I know that thought will change the next time Quinn does something to stimulate that ache inside me that just wants to figure out what is causing all of her issues. I just wish she would stay consistent. If she is going to be sick, she needs to be sick. If she is going to be well, she needs to stay well. this whole in between crap... it's like a rollercoaster. -Sarah
Jun 29, 2008
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
HUGS!!! I am sorry things are going so rough. I hope Quinn starts to feel better soon and you are able to get some rest! Libby
Jun 29, 2008
seamus' mama
Seamus was born 7/6/07, one month early with Silent Reflux. Zantac since 3 weeks old, currently taking herbs and probiotics.
Quinn is soo lucky to have such a smart, determined mother. I cannot believe how much you two have been through. Maybe your mom has a point- You could share your story with others on Oprah, or a magazine or some other outlet of communication. You have helped so many mamas with their challenges on this forum.Having a child with medical problems is hard enough..but then all the BS we have to deal with in order to get proper care is ridiculous. I'm sorry you had to spend so much time in the ER. That was a good idea to post your questions above the crib. I hope they thoughtfully respond. First and foremost, Quinn needs to get out of the hospital and you need answers and rest !! You amaze me, Sarah. Hugs out to you!!! I'm thinking of you. Vive and Seamus
Jun 29, 2008
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I hope she is doing better & home soon. And, I agree, the rollar coaster/unanswered questions of this disorder sucks. You never know what to expect. Ellen
Jun 29, 2008
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Sarah, all I can say is don't give up. I'm sure the docs are puzzled, but it's their job to find out what is going on. Q is very blessed to have such a determined mommy.
Jun 29, 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!
Sarah, big hugs to you and Quinnie. I wish I had answers for you! I can't imagine what you are going through. I really hope that the doctors will come together and try to really get to the bottom of her issues, and SOON! Know that we are thinking of you!
Jun 29, 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, Hang in there and stay strong. I hope they get some answers soon and I hope they figure out her motility issues. Don't feel bad about going home to sleep either. I couldn't sleep in the hospital either and had to go home and nap during the day or I was a total wreck. Big Hugs! We will continue to keep you guys in our prayers. Keep us posted when you can.
Jun 29, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I'm so sorry things have been so rough. It is so frustrating when you just want an answer and your child to get better. I hope you guys get something figured out soon. You are in our thoughts and prayers.
Jun 29, 2008
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
We are praying for you. I really hope they figure out what is wrong. I know you don't want another diagnosis for Quinn but I know you also want to know how to make her well again. Hopefully this will be the trip where they get the ball rolling on what to do for Quinn for the LONG term. Keep pushing them girl, you are doing the right thing! Quinn is lucky to have you.
Jun 30, 2008
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
...thinking of you Sarah.... You are awesome, and Quinn was born to you for a reason -- maybe no one else would be as determined and committed as you, and maybe that's just what she needs....who knows...but your stamina is just amazing...
Jun 30, 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.... :(
God, I am so sorry. You need a giant drink. I am thinking of you and just DO NOT UNDERSTAND why little Quinn keeps being faced with such obstacles. The same goes for you. I think, though, that she was born to you because YOU could care for her and give her the best life possible,a nd she might not have been so lucky had she gone to another mommy without your strength and patience
Jun 30, 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
Sarah, I know it's been such a long hard road, but if anyone can help find what is causing all of her symptoms, it's you. Stay strong - a lot of people are praying for you both.
Jun 30, 2008
Amalia 11/1/06, Silent reflux- Weaned off prevacid in the summer- back on again 15mg. Back on lactaid. Atalia- 6/17/08 DX with GERD and colic at 9 days of age. Appears to have mild MSPI. Upper GI. On Prevacid 22.5mg. Successful transition to whole milk! Eats everything!
Pic. Amalia and Atalia having fun at home.
I read your psot and I think- why am I sooo upset about Atalia? MAy the Lord continue to give you strength in the midst of all of this..praying!
Check with your
doctor first!