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Post by sugarbabymarlena on Jun 4, 2009 9:21:07 GMT -5
UGH, I can tell you that the aspiration thing is scary! we deal with it.....ongoing!!!! Marlena had the swallow study @ 2 months, and again @ 7 months and had a feeding tube placed @ that point she has had several since. We aloso found she was refluxing, but from then to now the reflux has come and gone several times. Tuesday we took her in for the barking cough better known as croup, and had a chest xray. They found her right lung to have fluid inside, but just a little more than the last chest xray. Pheumonia!  darn it!!!! I am exausted! Is there an end to the ugly aspiration?  ?? 2 years, On and off thickened liquids,a g tube, lots of feeding specialists...speech therapists. I mean we are used to it now but is there really light at the end of the tunnel like everyone says Any veteran moms with some insight?We are supposed to go see the feeding specialist @ Dornbecher after the pheumonia is well gone for another swallow study, lets all pray that Marlena cooperates better. Gonna have to starve her for like 15 hours to get her to drink that barrium stuff. I think this time I am gonna chug some to make her feel better.  ;D Marlena seems to be cool with everything, she hates the croup! Honestly I hate it too, nobody gets any sleep. <-----tired mommy and baby!!! |
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Post by sd112170 on Jun 4, 2009 9:34:24 GMT -5
I have a hard time with John. That has been one of the toughies for us to. I thicken all of his liquids. I don't think we are at the extreme as you and your baby. But it does get exhausting. I pray things settle down for you soon.
From one tired mom to the other,
Stacy
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Post by Googsmom aka Jennifer on Jun 4, 2009 9:54:35 GMT -5
{{{{{{{HUGS}}}}}}} on the no sleep. Prayers for the pheumonia goes away asap!!
Do you see Steve Gorsik? (might have spelled the last name wrong) He is a great feeding/swallow study guy up on the hill. He has done all of Brooks swallowing stuff. Dr Pinter at the Ds clinic is freeking awesome!!!!! He has some great insight with our kids.
What I had to do w/ Brooker durring swallow studies is bring my own yummy food. They don't have many choices up there. Pudding, ice cream, milk, etc. The last swallow study we did was with an Oreo cookie.
Now I just want to throw this out there but have you seen an ENT? Have they checked the throat to make sure all is normal for swallowing?
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Post by sugarbabymarlena on Jun 4, 2009 13:32:54 GMT -5
The problem has always been thin liquids. We see nancy synden and we have spoken to steve a few times (2).Nancy has always been there. We were refered to a pullmanary specalist, forgive me if that was spelled wrong.... a lung specialist. so He/ she is gonna look at the previous chest xrays and this last one! hopefully he can weigh in on the swallow study also. she has a regular ent she sees @ dornbecher, and i guess the prob, is not in her throat as much as it in the suck swallow breeth. when she swallows something, some funny flap either opens or closes prematurely. letting the tail end of the swallow to "penatrate" her air way. Not to worry about the pheumonia, they gave her strong antibios, and she should be great in a few days.........Finally got some sleep!!!!!! this morning! YAY! Thanks every 1 for weighing in! means the world, and someday it will mean the world to a mommy that just cant figure out whats wrong.... you know gives them new ideas! suppose thats the whole purpose....HEHE sleep is getting to my head!  |
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Post by steffipoo on Jun 4, 2009 14:25:48 GMT -5
 HI!!!!! OMG I sooo feel for you. I lived through aspiration pneumonias with my daughter Olivia for about a year and a half. She too had probs with thin liquids. Like if I tried to feed her soup let's say, she would choke on the thin liquids but not on the noodles. Olivia had 10 aspiration pneumonias before the age of 1. I HATED when they would suction her lungs too. I would have to leave the room cause I'd cry..BUT Olivias aspiration pneumonias got much better about 2-3 months after her vascular ring surgery( they found the ring after an astute radiologist discovered a weird faint spot on her swallow study then ordered a MRI with much discord between hisself and the attending docs at the time but she got her MRI) at 8 and a half months. This is what was causing her aspirations and after it healed from the surgery she had only one more pneumonia in her lifetime and that was when she was 5. She is now 11. Olivia was born with her subclavian vein wrapped around her esophagus and trachea like a noose ( causing low 02 as well an average of 80-82)and the opening was so tiny there she would aspirate. Now she's as healthy as a horse and requires no meds no nothing.She's been this way since 5 years of age..... It's a beautiful thing considering we spent most of her time in the hospital from 5 months till about 14 months then POOF!!!!  Hope all is well and I can feel your frustration cause I can relate so well. ((((HUGS))) Steff
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Post by steffipoo on Jun 4, 2009 14:29:22 GMT -5
Have they ever done a bronchoscopy on your girl? ?? Just curious Steff |
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Post by Myria on Jun 4, 2009 21:46:32 GMT -5
Sorry no advice for you, just good thoughts sent your way that your sweet little girl starts feeling better soon!
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Post by Googsmom aka Jennifer on Jun 4, 2009 22:13:53 GMT -5
Epiglottis? Thats what I sent you a pm about this morning. Thats where it gets tricky. That is Brooks problem too. It IS getting better all on it's own now that those darn tonisils are out of the way, but for along time they couldn't figure it out. {{{{{HUGS}}}}}} to you. I know this road.
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darn it!!!! I am exausted! Is there an end to the ugly aspiration?
?? 2 years, On and off thickened liquids,a g tube, lots of feeding specialists...speech therapists. I mean we are used to it now but is there really light at the end of the tunnel like everyone says 
;D
HI!!!!!
Hope all is well and I can feel your frustration cause I can relate so well. ((((HUGS))) Steff