Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › Quinn Is Back In The Hospital
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June 13, 2007 at 6:48 pm #36648AnonymousInactive
sarah—they can’t keep this information from you. there should be a doctors summarization of the ph probes that will tell all the info—this is what they are most likely to give you. there should also be a graph of the entire procedure, which is really interesting to look at. i had to ask specifically for a copy of the graph because all they gave me originally was the summarization. i hate to be negative, and i know i asked you this before, but do you really trust these doctors? since i have been down the surgery route and kind of know how things go, the things being done (or not done) by your doctors seem really weird. i’m really surprised that they put a g-tube into a baby that was in the 25%. you said that she did well unless she got sick, and then she would get dehydrated. it seems like it would be far better for them to figure out why she keeps getting sick, i have never heard of a baby being put on a g-tube with continuous feeds for periodic illnessess that cause dehydration. have you considered a second (or 3rd) opinion. quinn seemed to be doing so much better before her g-tube surgery.
kevieb 2007-6-13 18:49:18 June 13, 2007 at 7:11 pm #36649AnonymousInactivei just wanted to say you are very strong…and so is your little girl. i am glad her infection has healed…and i hope you get the answers that you are seeking very soon….
June 13, 2007 at 9:52 pm #36677AnonymousInactiveSarah,
You are an amazing woman and wonderful mother! I know this has been such a rollercoaster ride… I hope you and your sweet little one get to go home!
June 13, 2007 at 11:06 pm #36686AnonymousInactiveHi Sarah, sorry to hear about your little one, I unfortunately can totally relate, your recap sounds like you were talking about my little girl: the heart defect (vsd & asd), the nicu of course, the sleep apnea, and of course severe reflux. i on the other hand have only been going through it for 6 mo. I can’t imagine how hard it has been dealing with it for 17 months. Stay strong and stay positive. I hope all goes well with her surgery.
Hard to believe now that when they first told you that your little one had a heart defect, that would be the least of your worries. My wife and I talk about that all the time, we were mortified at 2 wks old when they told us our little 4lb angel had a heart problem. Now, though not completely healed, it isn’t even part of the disccusion. So if Her body can overcome a heart defect your little one will beat this as well.
Just do as we try to do, look to your little girl for strength, no matter how bad it is, or how bad it hurts, they only need a few min. of feeling good and BAM! There will be that smile that you Love so much. When it seems like you can’t take any more just picture that smile. It Helps.
Good Luck!
June 14, 2007 at 6:31 pm #36792AnonymousInactiveQuinn’s doctors here are GREAT doctors and I trust them with her life. Families travel from states and even countries away to be treated at Loma Linda. It is ranked one of the top in the country and I couldn’t have asked for her to be placed in better hands. We have had many second and third opinions. Get this… Her old GI wanted to put her on and n/g tube at nine months old and she was 17 pounds. Tell me if that makes sense?
About her ph probes. I did get the copies. They are just so hard to read and very confusing. I needed somebody to go over them with me and we did that today. Something I will post elsewhere.
AND… Quinn was not in the 25% when her G-tube was put in. She was in the 5th and falling. And she didn’t even have very much of a growth curve. Yes… she would do much better until she got sick… but you should know that kids get 10 to 12 colds a year. Quinn’s reflux is so severe that ANYTHING can aggravate her reflux into throwing up fits. Even colds. You should know that having a reflux kiddo. She has had every test you can think of to determine why she pukes when she only has a cold or why she pukes when there is nothing wrong with her and the ONLY thing that any test shows is severe reflux. And that can take a lot out of a little body… even dehydration. Do you think I didn’t research the g-tube before she had it put in? Do you think I didn’t know of the potential risks? I was told time and time again that a g-tube could make her reflux worse. We went in knowing full well of that. My family and I made this decision for her based on the professional opinion of all of our doctors and based on the opinion of mothers whom I know personally who have had it done and have witnessed with their own eyes all the troubles Quinn has had. The g-tube is so far a very successful step into Quinn’s wellness.
What tests have these doctors NOT done????
We all think that once we can control her reflux, Quinn will be in much better shape. She gets so dehydrated because she cannot eat because of the pain from the reflux. Because she just throws it all up. I asked the doctors why they think she gets so sick and they said that she doesn’t even get that sick… she just gets dehydrated from her food refusal and from the puke. Which causes high fevers and a malnourished baby… weight loss and lethargy… which is why it appears that she becomes so sick. And she is not doing better or worse with the g-tube. Aside from her weight, which has improved dramatically, Quinn is still the same. ANY kid can get an infection in their g-tube site. Quinn was just one of the unlucky ones.
Please, don’t try to make me feel bad about these decisions we have made for Quinn. We’ve already been through enough.
Thank you nataliachick and newmomofone. Your prayers and support go such a long way.
And DesperateDad, I’m so sorry to hear of your troubles with your daughter thus far. I remember being told that Quinn had a heart problem. My heart just dropped to the floor. I was so distraught. I never knew that MY kid would be born with congenital heart disease. And you’re right, I really thought that that would be the bigger problem for her. I didn’t think that reflux could be so bad. I’m so sorry that you are dealing with reflux. I do hope that soon, her holes close and at the same time am thrilled that they are not giving her any problems. I do love it when she smiles… don’t you?
-Sarah
June 14, 2007 at 8:05 pm #36800AnonymousInactiveSarah,
This is most likely a stupid question with everything that goes on with Quinn, but is she on Carafate at all to help coat her poor little throat from all that refluxing and vomiting? Do you know if she has developed any stomach or esophagus ulcers due to all the acid? Poor little girl, hope they can help her a quick as possible! When is her Fundo scheduled? We will be thinking of you and Little Quinn of course! How’s her teeth doing, I know she had the accident before.
Alexis’s mom2007-6-14 20:7:19
June 14, 2007 at 9:30 pm #36814AnonymousInactiveSarah,
Don’t get down – you are a great mom! It sounds like you are doing a wonderful job with your little one, and I don’t know if I could be as strong as you in your situation. Those are some really tough decisions to have to make for such a little one! You’re in my thoughts and prayers too
June 15, 2007 at 1:32 am #36825AnonymousInactiveSorry just saw this~ Hope you and Quinn are home soon. Keep your chin up and know that we are keeping you and Quinn in our prayers. Well wishes
June 15, 2007 at 12:08 pm #36858AnonymousInactivesarah, i’m sorry you were offended by my questions. i was trying to understand details. i asked if you were confident in your doctors, since their recommendations for quinn’s treatment didn’t seem to match the severity of your descriptions of quinn’s health problems. i’m not sure why you interpret that as me trying to make you feel bad about the decisions you have made.
we have been taken for a ride in the past by a couple of mothers, and part of the reason we were able to figure it out, was because they would give contradictory information. you have been a little bit contradictory with some of your information. an example is the statement you just gave above.
“I asked the doctors why they think she gets so sick and they said that she doesn’t even get that sick… she just gets dehydrated from her food refusal and from the puke. Which causes high fevers and a malnourished baby… weight loss and lethargy… which is why it appears that she becomes so sick.”
in the first sentence, you said that the docs said she DOESN’T get that sick. in the next sentence you gave an explaination as to why she gets SO SICK.
in a past post, you told us that because quinn’s reflux was so severe, they were going to do a JG tube and go straight to the intestines—yet you say that you made the decision for a G-tube based on professional opinions of your doctors, even though you knew it could make her reflux worse. did the doctors change their professional opinion?
you said that her average reflux during the 13 mo old ph probe was 10 min. you said her most recent ph probe, after her g-tube, showed an average reflux time of 44 minutes—–that is a SIGNIFICANT worsening of reflux—yet when i mentioned that she seemed to be so much worse after her tube—-you said that her reflux is neither worse nor better.
maybe you are just stressed out and don’t realize what you have posted.
June 15, 2007 at 2:43 pm #36880AnonymousInactiveI personally dont think that your reply was very “supportive”
“I asked the doctors why they think she gets so sick and they said that she doesn’t even get that sick… she just gets dehydrated from her food refusal and from the puke. Which causes high fevers and a malnourished baby… weight loss and lethargy… which is why it appears that she becomes so sick.”
in the first sentence, you said that the docs said she DOESN’T get that sick. in the next sentence you gave an explaination as to why she gets SO SICK.
Sarah said in the second sentence that it appears that she becomes so sick, not that she was sick. A dehydrated baby definitely appears to be sick, dehydration is severe sometimes more than a sick baby!
in a past post, you told us that because quinn’s reflux was so severe, they were going to do a JG tube and go straight to the intestines—yet you say that you made the decision for a G-tube based on professional opinions of your doctors, even though you knew it could make her reflux worse. did the doctors change their professional opinion?
My dd has an appt. for G-tube placement on june 22nd and it took her GI and doc’s forever to make the decision on just a G or a J. They only want to figure out what would be best for her. Yes she has DGE and severe reflux, but they decided on the G-tube for now. For Quinn I know that her doctors decided that a J-tube would not be a great idea because Quinn actually eats orally, just not enough. If she were to get a J-tube she would have to be on continous feeds all day. Her reflux happend to get a lot worse after the G-tube, I think just about everyone who gets a G-tube gets worse after, and more refluxing. I’ve never heard anyone tell me that the refluxing stayed the same or got better. Usually after some time it gets better, but not in the beginning.
you said that her average reflux during the 13 mo old ph probe was 10 min. you said her most recent ph probe, after her g-tube, showed an average reflux time of 44 minutes—–that is a SIGNIFICANT worsening of reflux—yet when i mentioned that she seemed to be so much worse after her tube—-you said that her reflux is neither worse nor better.
When a baby already has bad reflux you probably cant even tell if it is worse! My daughter vomits every single bottle!!! So when she gets her G-tube I dont even think I would realize if her reflux is worse or not as it is already extremely bad!
maybe you are just stressed out and don’t realize what you have posted.
I dont think she doesnt realize what she posted because she is stressed out…. -Vanessa
June 15, 2007 at 3:12 pm #36884AnonymousInactivevanessa, my reply had nothing to do with being supportive or not being supportive. i pointed out some discrepencies in the info that has been posted.
June 15, 2007 at 3:25 pm #36888AnonymousInactiveWell Sarah was here for support and was obviously offended by your post. I know you didnt mean to offend her, but I would have been also.
June 16, 2007 at 11:58 pm #37018AnonymousInactiveAt the end of the day, we are all trying to HELP QUINN… she is the one that is suffering here… and hopefully all the questions we have will help her somehow.
I do think that it is important to ask some questions… again, i have some experience with this because Matthew has had most of these tests… the rest is just from reading what others do before the fundo… so some of these things may make sense and some others will not.. hopefully Christine can help, given that Sylvia did go through the fundo…
Sarah – did you ever get an answer from doctors as to why Quinn used to eat so much food and not gain weight? I mean, that was the main problem, right… everyone thought something must be going on because she was burning too many calories? What did they say about this… how do they explain that she is gaining weight now? because of the formula change? because of the tube volumes? If it was the formula change… are the doctors worried about potential allergies not showing up in the biopsies? Malabsorption?? All this can cause reflux, bad reflux and woudl explain some things before you have to do the fundo. If it is a volume issue… well that in itself can create huge reflux issues…if it is so much more than the stomach can handle… have they discussed doing a junior formula at 1.5?
Also, i asked this before… did she have another swallow study?
Did they talk about trying the GJ and see how she behaves when she is sick…? So that when she is healthy you can feed herr through the G and when she gets sick you could use the J extension? can they control her weight gain with that and see if she stops screaming… a lot of kids are on the GJ for some time adn then graduate to the Gtube after a few months… especially if her eating problem only appears when she is sick?
Matthew got the tube because he woudl dehydrate from a lack of eating… but instead of putting IVs in, we were able to control it at home by just putting in pedyalite through the tube… maybe 5/10mls an hour and reintroducing formula slowly… just the same thing as the intravenous solution does… this si what you would try to do with the GJ maybe?
Did she ever have an MRI done? Not sure we talked about this earlier. First thing GIs do (at least the ones i have taken Matthew to) when there is severe reflux involved is check the brain… I do not know if this is something they have to do before a fundo if there is no other cause for the reflux?? Matthew has had 2 tests… they want to make sure there is nothing else going on there…
You post in parent–parent from time to time… have you posted there under the fundo forum… there are so many moms there with children with fundos… i am sure they have a lot more questions than we do about the tests leading up to it and reasons for it…
Nobody here is questioning your decisions… but like i said to you before, it is easier to think about what questions to ask doctors etc when you are not in the middle of it all.
June 17, 2007 at 12:09 am #37021AnonymousInactiveThanks Vanessa, for defending me.
In my own defense, I will reply as well. I don’t see how I have given any false information.
And she is not doing better or worse with the g-tube. Aside from her
weight, which has improved dramatically, Quinn is still the same.
Quinn’s reflux is still severe… so worse or better…. she is still in a lot of pain and discomfort from it. Which is what I was trying to explain so forgive me for not making that CLEAR. Her DEMEANOR hasn’t changed… if the numbers have then they have whether they got worse or better, her attitude and her amount of screaming and throw up fits have not increased nor have they decreased.About them going from a J to a G, yes their opinion did change… well, that was because I brought up the information that was given to me here that they cannot eat by mouth with the J and that they have to be on 24 hours of continuous feeds. I asked if that would be beneficial for her since she does not have a full blown oral aversion so therefore, the doctors decided that the J probably wouldn’t work for her since she would still reflux. But, initially, they decided on a J tube… and I said, no… then my GI doctor said to me… you do know that a G-tube could make her reflux worse? And I said, I understand and would rather go this route first. He then told me that if she does not do any better and she starts refusing food, then we may have to do the J-tube. The doctors, me, my family were in complete agreement with this decision. So far, Quinn still likes to eat. We do have some days where she doesn’t want anything, but she hasn’t gone into a full blown oral aversion. Might I add, so there is no confusion, she DOES like to eat, she just doesn’t eat enough… and we STILL have those days where she DOESN’T like to eat ie: when she gets sick or is having a terrible reflux day. Hence the reason for the tube, OKay? Look up the term Failure to Thrive, I’m sure you have done it already, but sometimes, even babies who aren’t below the fifth percentile can need tube feeds because they are malnourished. Quinn’s growth chart is by no means a curve. And she was malnourished and dehydrated too much of the time. She stopped growing length wise because of her condition and she had low energy.
This is a clip from a post that I posted in March. I later posted that
her average length of time for the reflux to stay in her esophagus was
10 minutes…Her longest reflux was
in the lower esophagus and it lasted for a little over 35 minutes. They
said that she had refluxed over 30 times into her upper esophagus and
the longest lasted for over 8 minutes.This was posted back in May when we made the decision to get the tube:
I know Quinn’s reflux is getting a little worse too. She just seems
more irritable and upset. She’s been arching her back and refusing some
foods. She does eat… just not enough.
And, since the doctor taught me how to read the results on paper, I dug up her ph probes from March to see what they were instead of relying on the information that was told to me over the phone.
In her upper esophagus, Quinn refluxed 51 times. She had four long refluxes greater than 5 minutes and the longest one lasted for 16 minutes.
In her lower esophagus, Quinn had 65 refluxes, she had seven long refluxes greater than 5 minutes and her duration of the longest reflux lasted a little over 35 minutes.
The percentage in this result was 17%.
So, based on these results, Yes, her reflux HAS in fact gotten worse with the g-tube.
The Fundoplication was definitely recommended with the g-tube insertion, but as I’ve stated time and time again, I refused it. One doctor had come in and told me that yes, his recommendation would have been the Fundo with g-tube as well, but that some babies do well with just the g-tube. I wanted to go the least invasive route before I agreed to do any major surgery on Quinn. I think any mother would have wanted that. Do I regret not getting the fundo at that time?.. yes, I do. Then i wouldn’t have to go this route for her, but at the same time, I can’t change what has been done. We tried it without the fundo and it didn’t work. And now we know.
I am VERY thankful for the information that other mothers have provided for me here. Without the information posted, I would be completely clueless as to what to do and I would have just went ahead with whatever the doctors decided to do. I think that having a j-tube put in Q would have been a bigger mistake because she likes to eat… she just does not eat enough.
BEFORE going through with the Nissen… I will be SURE that she has had all the proper testing done. I will NOT put my baby through ANYTHING that I haven’t researched over and over again. I will be SURE that we go to her neurology appointment before the surgery to rule out any neurological issues and I will be sure to take that list that Lori posted with me to our surgeons during our consult. I will be sure that she has a gastric emptying scan done too and may even print out some information from these forums and take it with me to be sure I don’t forget to mention anything.
I’m sorry if there was so much confusion. Maybe you weren’t trying to offend me, but I was truly offended. If there is anything else you need me to clear up for you, I’d be happy to do so.
-Sarah
June 17, 2007 at 12:46 am #37022AnonymousInactiveI just posted a reply and then saw your post, Thais…
No, the doctors were completely stumped as to why Quinn ate so much and still did not gain weight. They did a fecal fat test with her poo poo and couldn’t find anything abnormal. Their assumption was that she was perhaps trying really hard to move around and burning so many calories. They thought it could be from the screaming and they told me that severe reflux, depending on the baby can make a baby work really hard to become comfortable. She sweats and awful lot too. My friend said that he has severe reflux and he told me that when he is refluxing he sweats because it is so painful. There is no immune problems or anything like that. She doesn’t have any diseases that could cause any of that. That phase with Quinn subsided a little while ago. I think around 13 months… It was weird with the insatiable appetite. I have researched it and spoke with a mother of a girl who was about three months older than Q and she said that all her doctors were totally stumped about it too and that she underwent many tests to try and determine what it was and they couldn’t come up with anything either. I will still try and find an answer to that, even though this isn’t going on anymore… it was just too weird.
WE KNEW she was gaining weight with the formula change because when she was drinking it orally, she started to gain weight and when she started refusing to drink it, she dropped weight again. So now with the tube, she is getting the formula at night and she is gaining weight on it.
What is a junior formula at 1.5? She is on Peptamin Jr.
As far as allergy testing goes… she has had that prick test at the hospital and that showed nothing I wasn’t there with her when she had it done… I suppose the tests could be wrong and maybe I should have another one done for her. The one where they prick her, does that test for food allergies?
The doc never mentioned to me anything about using a j only when she is sick, but she is doing well gaining weight on the g-tube alone. She is still screaming and throwing up though even when she is not sick, so i don’t see how it would help her when she is not sick. I do give her fluids through her g-tube when she is sick… but this last time she was throwing it all up so I had no way of keeping it in her. I suppose during times like these, a j-tube would be very useful.
No, the doctors have yet to check the brain and the more info I find on the fundo, the more I know I should have her brain checked out. ESPECIALLY after what you found about Matthew. I had to wait for her stuff to be faxed to neurology and on Monday I will be making a neuro appointment for Q to rule out any brain abnormalities and I will be certain to ask if any of it can be linked to her severe reflux issues. I know she had an MRI when she was in the NICU, but things have changed. She has also had an EEG back in February… in association with the sleep study and they said that it was normal.
I haven’t posted in the parent 2 parent forum in a little while. I just like infantrelfux.org and choose to use my time to post here. I get limited time on the internet being a single mom of little miss Quinn, but every so often i read the posts there and will post something here and there if I do have time.
It really is a lot easier to think about what questions to ask the doctors when you aren’t in the middle of it all… I always have to chase after Quinn and speak over a screaming toddler during our appointments and it does make it difficult to try and remember what to ask. I try and get someone to go with me, but sometimes, that’s impossible and while in the hospital, it is just so stressful that you forget what you wanted to ask. But I do admit… it is a lot easier to bring a list of questions to the doctor.. which is what i plan on doing at our surgery consult.
I do believe that Christine’s intentions are good.
-Sarah
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