Calling all medical and BF experts. Help Please!

[sweetpea]

I posted a little while back about my 2and a 1/2 year old getting a bronch done.
Well he has been very sick w/ breathing difficulties off and on since Jan.
The Bronch showed green puss in his lungs and airways. He was directly admitted and we have had one procedure after another.
I had a wonderful Pulmonologist that saved his life. He wouldn't be here right now had she not gone w/ her gut on this one.
He was a pretty sick little guy.
I now have been told NO BF. It could kill if if he aspirates it.
They found out that he has been probably been aspirating his whole life. 2yrs. 9 months.
His lungs are now permanent damaged they say and to the extent will yet to be seen till he gets older.
He is Protruding all thin liquids into his lungs which has caused the infection.
I know have to give him a thickening agent called Simply Thick.
He is fighting me every step of the way on not nursing.
What do I do?
I have been given direct orders that I must stop immediately. Well he wont1 I feel so raw and mad right now because of this.
He can't have ice cream,candy, Popsicle soups. the list goes on.
We do not know all the answer's to why this happened.
He has been so Happy and healthy I thought!
The Biopsy's are still out. the PH Probe test isn't in yet either.
We are on Breathing Treatments and Clindamyacin and none of this was what I wanted but to save him I had to do this.
Here are more Questions.
1. How much BM is he getting at this point?
2. Is it really necessary to stop? They say it is protruding Saliva which is a risk for Protruding into the lungs.
I can't find clear info right now on Aspirating and BF! Can you help?
Any help would be great .
Thanks Catina

[tifttu]

I really don't know. I wish I could give you a big hug though.

I weaned both of mine at about 27mos and DS really wasn't ready so I know the pain your heart is feeling on that one. I think I cried almost as much as he did. It sounds like you have some odd information. On the one hand, if everything he eats needs to have the simply thick in it, then no, he doesn't need to be nursing. You could pump and thicken, but my guess is that he wants boobies (I know my DS did) and nothing else will do. On the other hand, if they're saying don't nurse because it produces saliva, well that's just silly because eating ANYTHING including thickened liquids will produce saliva. Heck, sitting her typing I have saliva that I'm swallowing.

As to how much bm he's getting, well that just depends oh how much he's demanding when he nurses. I think DS was still actually drinking quite a bit of bm, but DD was just gnawing around and not pulling out much milk.

I wish I had answers for you. I'd be ticked too about the mixed info. Honestly, in your position, I think the weaning might be the safest option, but I really can't say that definitively. I hope some others will chime in because while I always thought bm was the one think you could sorta aspirate "safely," it doesn't sound like that is the case here.

Good luck and if I find any info, I'll post it. Right now, DD is crawling all over me.

[sweetpea]

tifftu, The saliva part is because candy produces saliva which can cause Aspirating.
Your right my heart aches.
He is not letting boobies go.
My DH is of no help either. He screamed bloddy murder last night. It was horrible.
I have even tried Kangaroo care for him, where he can hold the boobies. Isn't happenning. He just keeps saying the milky won't make me sick mommy!
Up until this happened I had him down to only nap and bed time or owie's.

[tifttu]

I tried to do a little searching around and didn't find much other than aspirating a lg amount of bm is bad. Lots of help, right?

Is he bribable? Mine weren't, but I know other kids can be. Would he be willing to pick out a special new "big boy" toy, have an allowable treat (cake?), and some balloons and streamers? I know, I'm not giving anything you any ideas you haven't tried. I just wish I could help in some way. FWIW, DH was no help for me either. He would have tried, but I wouldn't let him. Somehow having DS scream with me was easier than hearing him scream without me.

Many hugs. I can't imagine having to go through what you're going through.

[crystal555rose]

I really want to hear what the nurses on here have to say about this. It is hard to judge the situation over an internet forum.

My heart hurts for you and your son. I sincerely hope your family finds a good solution, health and happiness!

[sweetpea]

Thank you so much. Tifftu he is not bribable. I have tried everything known to man here.

[StillSingingMom]

I don't know. Likely his care team doesn't know, either. It's an unusual situation, and there may not be good data about breastmilk in this situation. The care team is going to want to err on the side of safety.

You don't want to risk further lung injury. I didn't find a lot of resources on your situation, but here's a link to a discussion of similar topics on a Mothering forum:
http://www.mothering.com/discussions/showthread.php?t=1029944

[sweetpea]

Singingmom I found that info so helpful. His lungs are damaged matter of fact the Dr. said, "I can't give you back 2 and half yrs of lung damage I can only go from here".
Im interested in the post about the mom that didn't think she had aspiration problems. I think it was the 2 post . Im not familiar w/ there site so I can't search it.
If you could help there it would be great.

[madelsmama]

If he is unable to safely swallow thin liquids, which is the case since you are being instructed to thicken his fluids to either honey or nectar thickness (right?), he CANNOT safely nurse.

Can he have thickened breastmilk from a cup? YES, provided you're willing to pump/hand express.

It's not the type of liquid that matters, but the CONSISTENCY of the liquid. Sounds like he's aspirating any thin liquids.

I cannot imagine how difficult a situation this is for the both of you. But, my guess is, not nursing will get better in the next days to weeks for him. Can you change up your routine at all?

[sweetpea]

Cheryl, I think Im just so exhausted from trying different senerios. He is so angry with me.
Your very right it is any thin liquids. He is on the honey consistancy. I have tried to pump in the Hospital w/ their pump it's just not happenning. I know this is the end for us but it didn't need to happen this way.
If he was just using me for comfort versus getting any milk would it still be the same outcome. A risk. I have tried to get anything to come out. Even when he didn't nurse for a whole day.
I really do appreciate everyone's help here. I do Im just so dammed hurt by this.
Ds whole behavior has change to be an angry toddler as if the tantrums were not enough he is trying to rip my clothes off day and night.

[sweetpea]

Okay well one of the Biopsy's came back to what is growing in DS's lungs.
haemophilus influenza streptococcus pneumoniae .

They want his shot reccords and his last well child check.
The MD say's it might have to do with the HIB vaccination. I have a hard time believing this. I selectivley Vax on a delayed Schedule.
I feel like the fingers are pointed at me for not Vaccing my child.
How would this tie in with his Aspirating thin liquids?
I still dont have all the piece's to the puzzle here and now he is going to be put on another Antibiotic for 10 more days. Why?
They say he still sounds Junky. I believe it I can here him, but more Antibiotics.
Isn't this just killing off all his good Bacteria?
I started him on some Child Immunity and Baby Flora I hope this will help him also.

[tifttu]

Well, since they now know what bug they're fighting the new antibiotics should be more effective. Different drugs kill differnt types of bacteria and they may have been treating with the wrong type before knowing exactly what they were dealing with. They're aren't just killing off the good bacteria.

I don't know about the vaccine relationship, but hopefully now that they have a culture they can treat more effectively. I hope he's feeling better soon.

[Amy_G_]

You can weigh him on a very accurate scale before and after a feeding and see how much he is actually getting at the breast. The difference in the two weights is the number of ounces he is getting. I will imagine that it is a very small amount at 2.5. The amount a breastfed baby takes in does not increase exponentially like that of a formula fed baby, the breastmilk becomes more condensed, more like a mulit vitamin to supplement his immune system.

USUALLY inhaled breastmilk does NOT cause a bacterial infection/pneumonia. The body usually does not recognize inhaled breastmilk as a foreign body becaue it's alive with human growth hormones and such and the body reabsorbs it without issue. Unlike inhaling formula, which causes a form of chemical pneumonia.

I would suggest that you get all your details in order and summarized and email Dr. Newman for information about inhaled breastmilk causing such lung issues. I will warn, that some say he has a really bad bedside manner, and be sure to ask for specific literature on this issue, rather than a pat on the head.

I will also suggest that perhaps your child's "damaged lungs" has little to do with aspirating fluids, and has to do with an undiagnosed, untreated lung infection. Of course, a feeding swallow study should have been done to see exactly what is going on when he eats, as it sounds like perhaps everything may be related to a structural defect in the esphagus and the that valve that closes to allow swallowing is not working properly, so that it is allowing the food to enter the lungs. Similar to what happens in Acid reflux, when the food and acid "comes back up" and is sometimes inhaled.

thickening his feeds is not going to take care of the issue if it is bad enough. I would inquire as to how long food thickening is going to be an issue and what other options there are.

Now, if you have decided to wean your child, you need help doing so. Ideally you'd wean gradually, and that is the best way to go about it. If you are going cold turkey, no more breastfeeding and it will be difficult. Watch yourself for signs of mastitis, attempt hand expression (there is a link at kellymom), and a different kind of pump to see what will come out. Pumping is a learned skill, many women won't be able to pump much of anything when they first try but after several days of trying at the same time of day, they begin to let down and get some mik. who knows if that will work for you.

Institute a different bedtime and nap routine, a snuggly item, a snack and drink instead. During the day, don't sit down in anything related to a normal nursing position. new books, new activities, new games, lots of love, but avoiding the nursing position. If he's still in hospital, this is all going to be more difficult.

[Nipple_nectar]

Oh, what a dreadful time you are having:( I am so sorry! I think e mailing Dr. Newman is the best advice you are going to get. I could link this thread to the Express yourself forum for optimum traffic/ exposure.

I didn't realize you and I have nurslings only a few months apart:) If I had to quit suddenly, I would use cabbage leaves to dry up my supply and allow him to continue nursing for comfort. Alot of toddlers will do what is called "dry nursing", nothing comes out but they get the emotional comfort they are used to. Most will quit at this point, my DD1 kept saying "bewbie broke", it was too funny really.

She reluctantly weaned on her own when I was 15 weeks into pregnancy and I had all but dried up. The cabbage leaves will quickly dry you up but I wouldn't do that without the opinion of an experienced professional like Dr. Newman, remember, you have only one opinion to consider, this is a pretty important decision, get that second opinion.

http://www.kellymom.com/bf/concerns/mom/engorgement.html#cabbage

http://www.kellymom.com/bf/weaning/index.html

[sweetpea]

Amy we did do a Swallow study and it showed penetration. I watched it. He only had positive penetration on thins liquids. Not food. The floppy things in the esophegus are not doing there job. This is why they say use of the Simply thick will help over time.
The other test are still out. I have been letting him comfort nurse . I doubt he is getting anything. The Dr. say that is a big risk to let him comfort nurse though. Why? He is producing Saliva.
I will try to get all the results back before giving Dr. Newman an Email.
Mrs. R yes we do have babies very close in range. You made all my Necklaces for this baby.

[Amy_G_]

yeah, if he's aspirating saliva, then it is as much or most likely MORE dangerous than breastmilk. Breastmilk can kill things in a petri dish, including cancer cells, I'm pretty sure that it's not the main reason for your child's lung damage. I would ask for a second opinion about the "floppy things in the esophegus." If they are not doing their job on thin liquids, then the most important thing for the human body, WATER, is dangerous for him to drink. I would think there are other options besides just thickening his water. thickening water with simply thick--which is most likely a rice based thickener, seems like a recipe for added calories and weight. hmmm... maybe you should ask for a second opinion just to be sure something isn't being missed?

how's the infection?

[tifttu]

I really think you need a second opinion as well. I'm just don't following the logic. Yes, I understand that if all thin liquids need to be thickened, then bm from the tap is not a good idea. I don't understand the saliva correlation. He is not going to produce any more saliva comfort nursing than he would sucking his thumb or eating a solid food. What is this doctor's plan for the excess saliva that will likely be produced when he's cutting his 2yr molars? Is his sphincter failure a very new thing? I'm getting the impression that you feel you've done his lung damage over the past 2yrs of nursing, but has he had multple bouts of aspiration pneumonia over the past 2yrs? I'm sure he drooled like a faucet with earlier teeth and drank bm as well as other thin fluids. If this is long term damage from bm and/or saliva, you would have seen much earlier issues with pneumonia and choking.

If this is a new issue, have you gotten any more info from the doc other than it could be related to not giving a vaccine? Aspiration pneumonia and HiB pneumonia are different. Getting a vaccine is not going to prevent aspiration pneumonia, so take that guilt out of the equation.

I'm glad a swallowing study was done. If this doc doesn't have a clear answer of why it started, has he provided a long term plan of care, is this a try/wait see treatment?

I guess I just feel like you're not getting very clear information and with something as serious as aspiration, you need good clear information. If you don't understand what the doc says, ask again or ask to have it written down so you can look it up/show it to a medical type friend.

Amy G, as always, has great info and ideas. I'm also wondering how the infection is doing on the new antibiotics. Hope he's doing better.

[sweetpea]

Hello guy's I just wanted to pop in and update you.
Ds is doing much better. The new Antibiotics did help.
I went to the Pulmonologist Monday and I'm no closer to the rest of the answer's than before.
They did not have the PH probe results nor the fungal or mold. The Cilia will be out for a long time.
We talked about the chance this green puss is still in his lungs. She wont be able to tell me till she does another Bronch, next month. I'm not at all happy about that.
I am taking the risk of nursing him still. I think he is doing most of it out of comfort but he says he is getting lots of milk.
I spoke to the Speech Pathologist about the results again from the Swallow study and she said the results are deep Penetration w/ thin liquids. They did not see aspiration atb the time of the study, but w/ most deep penetration there is a high risk of aspirating thin liquids back to the lungs.

Amy the Simply thick is a gel based thickener. I dont like it. I think that it might be causing his loose stools. That might also be the infection because it is green and slimy.
They say they are going to order another swallow study in 3 months.
The issue that I'm having at this point is was the green puss caused because of the aspiration or was it because he was sick or what. They can't answer that right now. If he gets sick again w/ this green puss they have addressed the aspirating part of the equation.
All in all he is doing better. Im scared out of my mind that he still has this infection though.
he continues to be a little warm in the mornings. He continues to try to clear his throat sometimes.
I have again talked to the Other Pulmo. about this.
He seems to be playing and running around okay.
One thing that bothers me though again, is they put him on Advair 115/ Metered. And Singular. The first Pulmo. still feels there is asthma/ allergy component here.

Amy I think it was you that mentioned about aspirating for 2yrs' and guilt/ BF.
I did feel real guilty but now I'm okay.
The fact that is making this hard for me is. He has had 7 cases of croup related symptoms since Jan. and all but one case had Strider. That is the scariest thing for me to.

Here is a scenario of what goes on.
He goes to bed sometimes fine and wakes in the middle of the night w/ a weak cry then a bark then, nothing.
He has fluid come out his mouth then nose. Almost like he was drooling.Except he can't cry or take a breath in at this time.
This happens for about 1 min.
Then he proceeds w/ fever and cold symptoms. At this time I notice little red blotches all around his eyes and face the next morning.
His first episode of croup was when he was about 9 months. and he would continue to get sick like this more and more till Jan. when it started to get more aggressive.
I apologize for there length of this but, I'm at ends wits about the unknown here.

[Nipple_nectar]

I feel so bad for your little guy, this sounds so difficult to manage:( I hope you get some answers soon, thank you for the update.

I am actively trying to wean my 30 month old but I am not having much luck, she is pretty persistent:/

[sweetpea]

I so understand Mrs. R. When the Dr. told me to stop nursing I did not comply. I was not going to be told that nursing was the cause of this.
Well that is not what they said. I watched the swallow study and then later continued to nurse then Dr S came in and had a mom tom /heart to heart talk to me.
It broke my heart that I was going to have to quit because of this.
I would of been more understanding if I could gently wean him over time.
I hate to be told that I must stop nursing. So many people have judged me in the past for nursing a toddler. I just couldn't do it all in all.
I had to sneak in the nursing sessions. I tried to stop but he was going thru so much he needed something to comfort him.
His boobs are his life line at nap time and bed time.
I know Im taking a risk but I think he needs to be gently weaned not abrupt.
Im looking for any signs at home that any of my BM has gone to his lungs and nothing yet.
I believe in my heart that taking BF away was not the answer. He started to be very angry. I dont blame him either.
He now is clearly resisting the Gel thickener. I dont like the taste either. It's tasteless but it reminds me of lubricating jelly.
It is very frustrating at this point because I chose w/ Ds to do Natural remedies for him, ex. Chiropratic when he got sick.
As of the day he was admitted I was so proud he only recieved 2 doses of Antibiotics in 2 and a half yr.s
Any and all childhood illnesses were dealt w/ by the Chiropractor.
Anyways Im just rambling on at this point.
I will update more later.

[Aleida]

Big hug to you! This must be so difficult for all of you. I don't have any good advice, just am offering some support sent your way.