Posted By Posting
Jun 19, 2009
mommato3
dehydration
Well Holden had a real bad day. He has only had 9 oz in 24 hours. And he is still refluxing that like crazy. He is still plenty hydrated I guess he had plenty stored up but it is only a matter of time. I took him to the ped this morning and our normal ped who knows all about Holden wasn't there. This guy was horrible. He was so old he looked like he could fall over at any minute. I had to tell him some background on Holden and the guy actually told me they should have scheduled me for 30 minutes b/c he only had him for 5 min! Then after listening to Holden's chest ( I wanted them to listen as he has been choking and coughing)said that I had a perfectly healthy boy and that I was looking at just one tree in the forest and I needed to get out and smell the roses. My husband who is so sweet and doesn't say anything said well that's easy for you to say but it is kind of hard for her to do that when he gags, chokes, and vomits all the time and she spends her entire day and night sleep feeding him and she has two other kids to take care of. Anyhow, I started crying and had a few words with him myself. I guess I will have to watch him and take him in if he gets dehydrated. Our GI here in town is very pro-fundo and pretty much useless but I'm scared if we go to the ER and are admitted that is who will see us. Our GI is in Cincy and feels Holden's next step is nissen. I disagree for many reasons so we are scheduled to see a new GI July 9th there. Please pray I can get him to eat. Thanks for reading such a long post.
Jun 20, 2009
mommato3
I took Holden to the pedi this morning. He woke up doing some funky breathing this morning. Our reg. pedi was there! He said yes, Holden did still have aspiration in his right lobe (Ugggh), his lymph nodes are swollen, and his tonsils have white patches all over them. along with his feeding issues no wonder I can't get any food in him. He is not dehydrated he said. He put him on azithromycin which supposedyl has an antiinflammatory agent in it for his right lobe aspiration. He had a strep test that came back negative. To top it all off his top two teeth are BULGING. We all know what teething does to reflux.
Jun 20, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
could you do ice in a mesh feeder? It may help with both teething and keeping the dehydration at bay....and it should melt slow enough that he shouldn't aspirate.
Jun 20, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
How do they know he is aspirating?Has he had a bronchoscopy yet?
Jun 20, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

***read back and saw that bronch showed no evidence of aspiration..

Why do they assume he is aspirating reflux? The pulmo is really the best persom to judge that, not the ped. Did they do a CXR?

What is happening (at least right now now) sounds very viral to me with the white patches in his throat, not neccessarily from aspiration.

I wouldnt be in any hurry to do a fundo, unless there are life threatening reasons involved, which would make it worth all the serious risks.We have had every complication from severe retching,continuing aspiration,dumping syndrome,gas bloat syndrome dreaded nerve damage,, and he still has reflux,and aspiration as well.

Jun 20, 2009
johnniesnewmommy
We go through this constantly. It stinks and then to have a dr tell you it's nothing, just drives me nuts. I always keep a couple bottles of the pedialite on hand- so when he starts refusing his formula or he is really congested - i just give him the pedialite instead and he takes it better. That way I know he is not going to get dehydrated! The vaporizer goes non stop when he is bad like that as well- with a little vicks liquid in it. That seems to help with the cough and opens his airways some. Hang in there - we are thinking good thoughts for you!
Jun 20, 2009
mommato3
Jessicalynn-Since the bronch, he has begun getting choked all the time. He coughs and gets choked. You know it is reflux cause you can see it. He has been doing funky breathing stuff lately and having a hard time with his breathing. He coughs so that he pukes. The pedi can hear it in his right lung. I can hear it and I know it is aspiration b/c it is followed by a week of getting choked. This happened a month ago before the viral thing ever happened and we're still having issues. Pedi thinks this choking and aspiration lately is from all of his drooling, draubage, etc. He has micrognathia and has a small airway anyway along with discoordinated suck, swallow so he says that all this stuff going down (excess saliva along with his formula while he is slept fed) and the reflux going up is causing him to get choked. He won't take pedialyte. He won't take anything for that matter unless he is stone cold asleep and even then very picky. We do need to see our pulmo again but to be honest he is part of Holden's aero digestive team at Cincy that told me the next step is a nissen. They are concerned b/c his LES was wide open and he had several hundred episodes of reflux. They won't do a G-tube b/c of his LES open, his sleep apnea, and risk for aspiration. He wasn't too keen on a J b/c he is so oral. That is why we are going to a new GI in July. My ped ia anti fundo and thinks they are all nuts and promised me he will help me in any way to allow Holden time to outgrow this. I spend no joke 9 hours a day trying to give him his bottle. It is so sad to have him choke so much lately. I mean there is no way he can choke as much as he does and it not be aspiration. We are seeing Dr. Phillip Putnam in July. He is world reknown for dealing with EE and reflux kids. I hope he has a good enough head on his shoulders that he will give us some options. I would think he would have seen many misdiagnosed kids and horror fundo stories with his EE specialty. We will see, but I know I don't want to end up with a GI around here in the ER. Yikes!
Jun 20, 2009
mommato3
slimfast13
Thanks! I went and bought one tonight. He really liked that! Didn't even think of that. Duhh!
Jun 20, 2009
johnniesnewmommy
Johnnie was and is the same way- especially a few months ago- but I do see improvement even if it's a tiny bit at a time. I am lucky that he will take the pedialite- but only the generic brand from walmart (don't know why). I have been told over and over that he needs the fundu- but I also have been told that it would be worse if he had it because he vomits so much he could tear it out. So I don't know what to think. There was a time a few months back when he was so bad I probably would have allowed the surgery because he had pneumonia all the time and he scared me to death, but now he has improved some and I'm not willing to go that route yet. You have no choice but to hang in there= but I KNOW how scary and frustrating this all is. Just know that we are here for you!
Jun 20, 2009
mommato3
johnniesmewmommy
Thanks! What breathing meds/antibiotics has Johnnie been on for his breathing? We have tried several allergy type meds for his drainage and congestion with noluck. I would assume it is b/c it isn't allergies but out of control reflux. The azythrmycin works the best when it is not so much congestion as it is breathing difficulties and the annoying non juicy cough that won't go away and he's coughing so hard he pukes. The doc saysit is b/c his bronchials are inflammed from everything and that is why.
Jun 21, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

You know, they can still do a GJ tube to bypass the stomach and he will still be able to eat orally.A feeding tube sounds like the best next step to me, with the open LES, a GJ would be the best option.It will also take the pressure off both of you, trying to get him to eat. I remember having 2 hours a feed 6 or 7 times a day of sleep feeding, syringe feeding, all while my son was screaming before he was hospitalized for FTT and they started tubefeedings. I feel for you, it was awful.I would really try that before resorting to surgery though.Usually the fundo isnt done unless there are repetative aspiration pneumonias or lung damage, just because of the risks involved.

As far as breathing meds taking something like flovent or pulmicort on a daily basis can help a lot with the inflammation with aspiration.We have had better luck with a hefty dose of Flovent twice a day every day, and Xopenex every 4 hours plus other meds like abx as needed.The meds we use are in my siggy.There are also meds that cab help dry up some of his saliva,secretions etc.

Has he had esophageal biopsies to rule out EE? My son also has EGID. Dr. Putnam is very good. I would also have esophageal manometry done to try and figure out why he is choking so much, make sure there is no dysmotility of the esophagus(it is very bad for a child with esophageal dysmotility to have a fundo done).Is he choking when he is eating as well? I am going to assume with his history he has had swallow study..

Jun 21, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
forgot...I have some fundo pics on my blog if you are interested, and there is a video that shows retching and stuff(Brent's Journey) which is a fundo complication I really hope they figure out how to help your son the best, what ever that may be(((hugs)))
Jun 21, 2009
mommato3
Jessicalynn
Thank you so much. I hope Dr. Putnam will be more reasonable in giving me other options. I am with you that a GJ would fit Holden much better. It is quite frustrating that the other GI wouldn't even hardly listen to me about the GJ. He said many kids do great with the nissen and I also told him while that is true but many don't. And for the one's that don't it is horrid. I saw little Brent's video a while back on one of your other posts to someone else. It breaks my heart. With Holden's puking and sensory issues he is at a high risk in my mind for nissen complications. Hopefully we will find a GI and or surgeon to listen to me. I agree the GJ would take some of the stress off of our family. While I know it has many issues and is by no means a simple fix, it would allow Holden to grow and hopefully the LES to strengthen without such a burden on me to provide his nutrition. I guess what I am doing is basically playing his feeding tube. Holden has had 2 video swallows and a FEES test of his swallow done. They have had to syring his last swallow and FEES so I don't think it gives us a true picture of what all I want to know. He has also had an MRI to check for Chiare (however you spell it) . Anyhow, maybe we won't have to go to the next step but if we do I hope I will have a GI who will listen to me. Thanks again. I will talk to the doc about Flovent or Pulmicort, etc. I may have some more questions later. Thanks for sharing your wisdom.
Jun 21, 2009
mommato3
Oh yeah, he did have biopsies taken when they did his scope. Looked good. He has been on elecare for a long time. I feel like he has some emptying issues as well. Yet another reason to me a GJ would be next step. He is too young to do manometry on they said without a g-tube but we have had a GES.
Jun 21, 2009
johnniesnewmommy
Johnnie is on Pulmicort and Albuterol for breathing. He was at one point taking back to back albuterol treatments every 3-4 hours just to keep him from turning blue. It was absolutely horrible. Thank God he is now to the point that he only needs the albuterol when he is sick with a virus or if someone at daycare lets him lay down for tummy time or a nap. As soon as he goes vertical or even gets a tiny bit of dairy we are right back where we started. I'm not sure if he is getting better because he is getting older or if it's because im being smarter about the things he can and cannot do. Either way it is a struggle every day, but we havent been in the hospital since he was 5 months old so I AM GRATEFUL!
Jun 21, 2009
mommato3
Jessicalynn
I now remember why they told me if we did a GJ or J we couldn't do oral. They said b/c as long as he was getting anything oral in the stomach we would be in the same boat as far as reflux. Normally you can still tube feed and do oral but with what they are trying to accomplish it wouldn't work. My thoughts though are that if he had the nissen he prob. wouldn't be oral after that anyway and he could have complications. What are your thoughts on all this? Also, would you do GJ or J? IF he could eat some orally, doesn't one of them cause your stomach to empty slower b/c it is in the way? I hope we don't have to go to the next step and I will hold off as long as I can but I want to be as knowledgable as I can about what I feel like the next step should be for Holden if we had to go there. I also think the more knowledgable I am the more likely the docs are to listen to me. Thanks for helping me with all of this.
Jun 21, 2009
johnniesnewmommy
I'm afraid I don't know much about the feeding tubes. My thought has always been - if he's not aspirating on swallow AND I can get him enough nutrition to keep him stable- than I would prefer for him to NOT have a feeding tube. I just think that it's one more thing to worry about. I also know how hard it is to get him to eat anyway- but if he was tube fed then I think he would give up trying to eat entirely. The swallow study we had done- didn't show aspiration and only showed a delayed swallow. His ped said that if she had referred him to the ped surgeon to do the bronch that the surgeon would have automatically placed the feeding tube as well as do the fundu, because he is so bad. That is why it is taking forever for us to get the bronch done- because we are waiting for the ONLY ped lung doctor in our state. I did think he was aspirating on swallow because he chokes and gags and coughs and sounds very congested after he eats, but now I think most of that is food allergy related. We are now trying Elecare and im afraid im not seeing a huge difference in his congestion but it's not worse so who knows! I think the decision to do anything is time related- meaning it just depends on the day, and how tired we are and frustrated and grasping for anything that might make it better. In the end you just have to do what YOU think is best for your baby.
Jun 21, 2009
mommato3
Thanks! I don't want the decision to be time related. In fact it shouldn't be. The decision to go to the next step is one that should be thouroughly researched, though and prayed over. I am in a low time right now but it also makes reality set in that I don't want to go around not educated either especially when everyone who has your child in their care is discussing the next step with you. I want to be able to have some serious discussions with them and feel like I know what I'm talking about so that I can make the best decision for him. I feel like Holden will get better and he has a great team of therapists here to help him and me but I do however want to know as much as I can about different options for next step if we have to go there. I don't want to end up on the phone with his pulmo who does a bronch, etc. and have them tell me that his apnea or aspiration is getting serious, etc you need to do this.. and me consent to it b/c I am at a low and scared and trust the doc. If I am prepared and have thoroughly thought things through prior to this then I will be in a much better position to make awell informed decision about Holden. I have an upcoming appointment and in case it is brought up I want to know what things to talk to him about. Sometimes docs don't tell you all your options. I will do my best and have his entire life to keep from going to the next step but at some point while going to the next step will not make things better it is necessary for their life. They will have to live with these lungs forever. There is no good next step. I hope you can get Johnnies bronch done soon. Has he had all the testing (scope with biopsies, probes, etc.) If not I would have them do that soon as well as some more scans on his lungs. Sounds like things are very serious for him. My understanding is that for some kids that have to go to the next step tube feeds are better than nissens so if you think there is a chance that they are going to want to do a nissen I would check into all your options as well.
Jun 21, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

Esophageal manometry alone doesnt go through a g tube. It goes down the nose like an NG tube or ph probe.It is the antro duodenal manometry that goes through the g tube. So that is an option for you guys!Try to post pics below of Brent's manometry

http://i304.photobucket.com/albums/nn161/Jessicalynn26_photo/S7302089.jpg http://i304.photobucket.com/albums/nn161/Jessicalynn26_photo/S7302091.jpg

Well, that is true as far as reflux possibly continuing if he eats even with a gj tube, it is still a possibility, just as it would be with a nissen.The Nissen can cause even more swallowing problems and also worsen aversion, it will NOT make him want to eat. The best option may be to first try going to GJ feeds alone if it is there is serious risk to his lungs.. Brent has been NPO for almost all of the last 2 years due to aspiration,choking and turning blue,reflux,EE,esophageal obstructions caused by severe esophageal dysphagia, he is also on 24 drip feeds and vented with farrell bags to help with the dysmotility and aspiration.He also suffered vagus nerve damage during the fundo. We recently tried tastes of oral feeds and ended up with severe breathing problems and going into emergency endoscopy to remove food that had been impacted in his chest for a week and wouldnt pass, he was choking and inhaling his saliva as it wouldnt pass:( Pulmo said he is just going to have to be tubfed only again because the lung risk is too great.We have not gone to GJ yet as his motility is severely affected throughout the entire GI tract, so it may not help him too much, but we are thinking about giving it a shot, he has severe nausea,aspiration going on now through all the meds, along with frequent respiratory distress, and anything seems to be worth a shot! The good thing about the GJ is you can feed into the jejunum and also vent the G port at the same time.

Jun 21, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Photobucket Photobucket
Jun 21, 2009
johnniesnewmommy
Holden is very lucky to have you for his mom. Don't ever let any doctor treat you like you don't know what your doing. I'm pretty sure with everything we all go through, WE are the experts. Johnnie has appointments all week with speech, physical therapists, early intervention, and a nutritionist. We are still waiting on the pulm but he is holding his own so for now it's not urgent. How is he eating/drinking now?
Jun 21, 2009
mommato3
Bless his heart! Thanks for sharing the pics. I know it takes time to download all of that. Was he diagnosed with EE and motility issues after the fundo? What about dysphangia? Was this a result of a too tight nissen or did he have some problems prior? I have heard many stories of docs jumping into nissens (like I feel my old GI was) without checking into the why's and you end up with a kid with EE or motility issues and nissens make it so much worse and could have been avoided. Ok-Holden's impedance probe said that the time in the eophagus was normal. Is this reflux episodes or could it tell about food. I know cincy does that manometry so I will talk to putnam about it. After Holden eats you can feel his stomach cramping up and then a vomiting spell or if I'm lucky just reflux. What about meds? What is Baclofen? Holden is on Reglan (helps a WHOLE lot), trialed Emycin which actually made vomiting worse, Prevacid (15 mg twice a day), Zyrtec, and Azithromycin. We know the Prevacid is controling the acid as his probe was done on meds and he had no damage on his scope. So we haven't really played around with that. For lungs-What is Xopenex and how is it different than Flovent? I think what I need most is a doctor and pulmo who only do nissens as a last resort and will give me some options where my docs now have me pinned up against a wall and has only offered me another GES AND a referral to the surgeon based on his LES and probe results. Thanks again for giving us ideas.
Jun 21, 2009
mommato3
I am so glad Johnnie is now geting his EI appointments. It takes forever but they are the best things that have happened to Holden. It will take a weight off your shoulders to have that support working to help him. It can take several weeks for things to get better on the Elecare. It takes a while for all of the allergies to get out of his system and for his gut to heal. Holden has been eating anywhere from 10-15 oz and no solids the past couple of days. Not very much but enough to keep him hydrated (which means no ER visit). If I can just hold him out until we have our appointment. He really needs about 24 ounces at 26 calorie per oz according to his nutritionist (that can be a combo of solids and formula but I have to make sure the solids add up to equal the 26 calorie per oz formula it would be replacing). His development has come a long way since starting EI.
Jun 21, 2009
mommato3
now the 10-15 oz is not willing. He has to be passed out cold before I can get anything him him but we are hanging in there.
Jun 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

His emptying testing was normal before the fundo, but in retrospect did have some symptoms of gastric motility problems then as well.He did have swallow delay, and some choking as well which was then attributed to reflux, he didnt aspirate on swallow then, only reflux. It came to the point he was so sick and at such risk with his lungs that his pulmo and GI agreed it was in his best interest to have the fundo done ASAP, with the issues becoming potentially life threatening.This was after tubefeeding and hospitalization had been initiated, all meds tried at max doses,feeding therapy,etc. I have learned much more about motility and swallowing problems, that I wasnt really aware of before his fundo.

Brent's fundo was a difficult procedure. His lap fundo took well over 5 hours to complete! His anatomy was a mess. He also had to have a hernia repair to reconstruct everything.He had the worst trapped paraesophageal hiatal hernia the surgeon had ever seen, an abnormally small stomach, and damage in his esophagus and stomach.He had a tough recovery and required morphine and fentanyl for over a week in the hospital and still in a ton of pain when we came home

He had manometry and further testing after the fundo because of very very severe retching and inability to tolerate tubefeedings,choking,etc. He has also had his nissen dilated a few months after surgery, and it did not help at all. They took biopsies at the time of the dilation and they came back showing he also has Eosinophilic Disorder( biopsies prior to fundo were neg for EE, only reflux, but he had been on neocate/elecare since he was around 2 months old because of eosinophilic colitis, and he didnt eat much food. He was also diagnosed with having nerve damage after the fundo.

The impedence probe is different than manometry test, it looks at reflux(acid and non acid) whereas the mnanometry looks at the muscle and nerve function of the esophagus during swallowing.

If Regan is working then stick with it! You may want to see if the dose may be upped. If the Prevacid is controlling the acid, then yes, leave it alone. Baclofen is a muscle relaxer used for treating spastic disorders,high muscle tone,multiple sclerosis..It has an effect that can sometimes improve gastric motility and lessen reflux, it also was the last thing we could try to help with the severe daily retching my son experiences. It is not something you really want to use unleess you need to as it may have side effects, and it can also cause baclofen withdrawl syndrome if it has to be stopped for any reason, which causes seizures,hallucinations,tremors,delusions,autonomic dysfunction,etc..My son has has baclofen overdose via pharmacy screw up and also baclofen withdrawl syndrome when he came off it for testing, scary stuff..But, that being said, it does help some, and some kids really are benefitted by using it. Mainly we see drowsiness, drugged effect especially on dose increases.Of course he also takes high doses of zofran and neurontin(pain med for nerve damage) so it is hard to tell what causes what side effect honestly..

For lungs we started on zithromax for aspiration pneumonias works best,prednisone as needed,maintnence meds we started on pulmicort, 0.25 twice daily albuterol every 4 hours.....didnt work....Moved up to 0.5 pulmicort twice a day helped a teeny tiny bit..........(he doesnt just get cough and a little wheeze he goes straight to respiratory distress with bad grunting,retractions all the way around, and the cough and wheeze)..He still had a lot of grunting so we switched to Fovent 220mcg, twice daily. We have finally seen noticeable improvement. My daughter and son also take flovent and advair(which is made with flovent and serevent) for asthma/microaspiration and it seems to work better than pulmicort for them as well..Flovent is an inhaled steroid that works to take down inflammation in the lungs. Albuterol and Xopenex fast-acting medicine that is used to treat the narrowing of airways, they relax the tightened muscles around your airway passages. They are rescue medications to be taken when the breathing trouble occurs. Most kids take Albuterol, but some have to take Xopenex, Brent has heart related side effects with albuterol, so we switched to Xopenex 1.25. It seems to work better for him.Flovent and pulmicort are preventative maintenence meds to prevent symptoms.

Jun 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Also, since the fundo, he now also aspirates on food as he swallows it....because his esophageal motility is so screwed up.
Jun 22, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
One more thing...I am really shocked that they are talking about having a serious irreversible surgery like a fundo done because of his breathing trouble, yet they havent even put him on any breathing meds to help his breathing? I would be asking that question!That doesnt make much sense to me lol..
Jun 22, 2009
mommato3
Thanks for all the explanation of meds. I am very frustrated with al his docs right now. Did you read my post another apnea and choking episode? I just got back from hospital from getting a chest-xray which showed no pneumonia but he is coughing this dry hacking cough constantly so that he's been puking all day and night. The pedi on call said since no pneumonia to wait till tomorrow and call my pedi and see what he wants to do. I think he prob. needs some breathing meds to help with the inflamation even though there is no pneumonia. Anyway, like I said we are going to a new doc and surely he will want to try everything to help buy Holden time to outgrow it. His old doc and pulmo wanted me to continue to come in for weight checks and based on his scope and probe if he had insufficient weight we would be referred to the surgeon. When asked why not tube feed first they told me he was an oral child and they didn't want to make him totally tube fed. I was told that if he was aspirating they would have immediately told me fundo. So when asked if the only reason for fundo was for weight gain then why not G tube and remain oral for rest. I was told they wouldn't do NG b/c of his gag, reflux etc would be worse and they wouldn't just do a G tube b/c his reflux is already so severe by impedance probe that it would make it worse and they wouldn't do surgery once just to have to turn around and do surgery again (fundo) especially knowing he had an open LES. And that many kids do great with nissens. So they don't even know he's having breathing issues b/c I am scared to tell them b/c they already told me that if breathing issues were occuring and with his numbers of reflux (which are so many that he isn't about to outgrow soon they said) and open LES they don't play around with that. His pedi has been handling everything. Anyhow, I need to find a pulmo and GI that will help me with these meds and give me options. As we all know many docs are very quick to do nissens and many parents are quick to do them especially when things get scary. Thanks for your help. Hopefully now I will talkto my pedi about these breathing meds until we can get in to see Dr. Putnam and hopefully new pulmo or with the new GI maybe his old pulmo will be more reasonable.
Check with your
doctor first!