Support for Parents of Children with Pulmonary Disorders.
I need some opinions, from people who really understand all this stuff. Val has central apnea and obstructive hypopnea. Weve known this for about year and a half now. Her last sleep study was a year ago (march 10, 2009). Her first was in either august or september 2008 (i think, not 100% sure, but i know it was around then). The first one was done alone, the second with a ph probe. They were both very simmilar, the second her O2 sats were lower and her had a few more apneic events, but they...
Wow... this thing is awesome. We trialled it at clinic with the mouth peice, which did not go too well - Brandon tolerated it but did not like it... he was able to form a seal around the mouthpeice but he couldnt stop off his nose, so the air just rushed out his nose, and drove him nuts... the therapist said we should really try to get him used to the mouthpeice over the face mask because its hard to hold the mask to his face, and operate the machine at the same time... Well we...
I know everyone goes over this a few times a year on this forum, but I would love some clarification. My daughter had a sleep study last night for bipap titration. I am looking at the physician's orders. She said to try cpap and document intolerance, than switch to bipap. The sleep study tech seemed to think she was doing well, and did not mention switching to bipap. What is the exact difference between them, and why would someone wiht a neuromuscular issue need to use bipap vs. cpap. ...
I had to take Lille to her well check visit today and so, since I was going out without the other kids and I had nursing/home health aids home I made her dental appointment too. :thumbs_up: I was quite proud of my planning ahead as, I must humbly admit, my life is CHAOS and I don't always have it together no matter how hard I try. But this, this I had together. I took her to her well child at 9 AM. Her dental appointment was at 11:10 AM so we went to Target and shopped a little, mommy got some...
I'm so pissed right now. How can they say a person that drops to 85 at night doesn't need 02. The problem too..I was awake when my 02 dropped because the tech came in to make sure the finger thing was on right..which it was. What is my Sats doing when I'm in a deep sleep. BTW..I never got n to REM sleep during my sleep study. What can I do now? I called my Pulmo office and they can't believe either and they aren't sure what else to give them. I hate medicaid. Hopefully next month we will have...
I had a sleep study done on Jan. 28. I got my result at my Pulmo appt. on Feb. 18. I bombed my sleep study as I didn't sleep at all. My room was right next to a very busy intersection and hospital across the street. Sirens going off about every 30 min and cars and trucks with their radioes blasting. My sleep efficiency was 31%. I knew that was going to be bad and Pulmo wanted to put me on sleeping pill, but I refused. I'm on enough meds tht make me sleepy plus I knew the reason for the poor...
How common is it for children who come down with pneumonia to be hospitalized?? Sam is recovering from pneumonia (not aspiration this time) and his 2nd double ear infection in the past month. We were able to ride it out at home this time (barely) and I was very thankful but it sounded like it wasn't typical to not be admitted. Any thoughts on this??
I'm looking for somebody to write an article about asthma, especially as it pertains to a child with other developmental, medical, or physical issues. Anybody interested? No writing experience necessary...we can edit your writing as needed.
What are you/your doctors ok with as far as saturation levels while sleeping? I ask because our pulm's weaning orders used to be ok with over 92%, but then they (the pulmonology department at our children's hospital) decided they wanted all of the docs' orders to be the same, so they changed the weaning orders to 95% or higher during sleep. Those three points make a big difference! My son usually sats 94% and up overnight, occasionally dipping down very briefly to 92-93. He always...
Has anyone been to National Jewish in Denver? Kacey's asthma specialists want her seen there. They are now thinking she has Vocal Cord Dysfunction more than asthma, though she may have some asthma too. It just seems like VCD is much harder to deal with than asthma. I'm hoping we learn a lot and get a lot of good info at National Jewish. Any advice on what we should do while we're in Denver? I've never been there.
Got a call from the sleep doc with the reading from the compliance report from 2 weeks ago. It shows that there are a great amount of leaks, obstruction and apnea still. Here I thought it was helping! He thinks its false obstruction, that our bipap machine mistaken the leaks for obstruction. Anyhow, we'd need to go back for another sleep study with our mask to see what's what. Why, oh why don't they make ped masks??????!!!! We are mincing our los faces to fit these larger masks and its...
They move fast! I talked to the Resp nurse on Monday, she talked to another nurse in the department who tracked down a machine, and we go get fitted at 2pm and bring it home! I REALLY hope this helps...
Were at a loss. Brandon has a chest infection again, and his cough is horribly junkie but not at all effective. :( The resp nurse is looking for a Cough Assist at the hospital for us to try out tommorrow but it doesnt sound like there is one. were doing chest percussion 4-5 times a day, and she said saline nebs 'could' help, but doesnt think its worth going to the trouble of getting a nebulizer at this point because all it will do is loosen secretions - he will still have trouble...
your child's cannula? Ava's RT and a few nurses have recommended clipping. How far do you clip, if you do?
Hi Ladies! I was wondering if you could help me help a friend? Her son is 7 months old. He is the noisiest breathing baby I have ever heard. He was hospitalized at 2 months, and diagnosed with some form of malacia....he has a very floppy esophagus and a deviated septum. He has been getting "chest infections" that they have been treating with basic antibiotics. Her pediatrician booked a sweat test for him, and told my friend that he is showing some symptoms of cystic fibrosis...she is...
Ty has mild asthma (not much wheezing - lots of coughing, grunty breathing, etc) - and takes Flovent for that (which has worked beautifully - until now weve never had any issues). He's had a cold for a while that is kicking his butt and were off to the ped shortly. As it is right now he has a really junky cough, retracting between the ribs, nasal flaring, and his sats dip with any activity (I have a finger probe and with a solid reading when he's sitting and resting quietly he will be...
Sam's still sick and his sats are pretty bad right now. He's not getting much above 92% on his own so I've got him on supplemental oxygen. The problem that I'm having is that he's a mouth breather with an upper respiratory infection (including a nasty cough) and he's had trouble with vomiting over the past week. I can't use a cannula on him successfully (he'll pull it off over and over throughout the night) and I can't use his mask right now because of the risk of him vomiting and...
Nolan was recently diagnosed with severe central apnea and obstructive apnea (161 desaturations >3%, 60 central apneas, 41 hypopneas, 3 obstructive apneas, lowest O2 level was 79%). Our ENT has ordered an MRI to see if the centrals are being caused by a Chiari malformation... something I doubt since Nolan had a "normal" MRI at the age of 11 months (routine hearing loss MRI). The ENT also wants to do a tonsillectomy/adenoidectomy and place his third set of PE tubes on April 13. This makes me...
I want to know if I am thinking unreasonably before I try to tackle A**** again. The Masimo pulse ox they have now given us has a 7 hour max battery life. If Karuna ever goes to school all day, it won't make it through the whole day. (Some days she is spot checked hourly, other days she is on continuously.) A trip for a day of appointments at the hospital typically lasts 10-11 hours with few opportunities to plug it in for any extended length of time. This seems like it could get...
How many pulse ox sensors do you go through a month? What do you do to extend the time for them? I have the pink teddy strips and sometimes get sport wraps. We still go through so many a month.
Well his chest was clear yesterday (yay!!), but he sounds AWFUL still - coughing alot, junky, 104.5 fever between meds... His coughing wasnt awful yesterday so they told us to just stay the course, but today it picked up alot and the nurse told me to give him Salbutamol (is that the same as albuterol?) every 4 hours. I have to call if it doesnt help. he's doing alright - still retracting a bit, but not awful. sats are ok, but not great (94-97). heres hoping this is the...
I am just not getting anything I need from A**** right now (we are still fighting to get the appropriate parts for the pulse ox) so I am thinking about just buying a new nebulizer and supplies out of pocket. It is frankly just much easier and then I can get one that does not smell like it is going to catch on fire when I use it for 45 minutes straight because the dang thing is so wimpy. Anyway, I was thinking of getting a Pari Trek. Those of you who have this one, do you have the battery...
My daughter is going on bipap at night and all naps, for hypoventilation and high co2 levels. We are on the cancellation list to get in quicker for a sleep study to titrate levels. A few questions....... How big are the machines really? Do you travel with them? Also, how do you deal with naps? My daughter usually naps in the car......
Guys, i've had it. After the other night when my child gasped incredibly loudly for air, followed by a coughing fit... I'm talking ,she had me and my mom running into her room because we heard her gasp so loudly... heard it in the other room and my mom heard it in the living room. Scared the poop out of us!!! I've decided to cave in and rent one since i can't afford to actually buy one. So, where should I go? does anyone know the cheapest prices? Or even companies that I can call to see if...
What type of ventilation options are there out there: (I'm not meaning specific to my dd's life, I want to know more in general) for a ped patient? In my mind, I know Bipap/C-pap and Oxygen (are those considered ventilation)? I know that bipap is indicated for neuromuscular disease.........Any links to pages would be very much appreciated........
Katlyn had her Pulmo apt yesterday_ and I've never actually seen her Stats so good, she was at 99 and 100. The Pulmo said she really wasn't to concerned about her last chest X-ray with the spots and her respeatory rate was good as well. So she does not feel that Katlyn's extra fatigue issues are Pulmo related. But then last night I found out some interesting info on Katlyn's sleep. A week ago when she was really struggling I had her sleep propped up on the couch and she sleeped well so I...
Check this out. We were really concerned with Quinn's mobility and the fact that she had to carry this oxygen thing around while she was at school. At first, we were putting the tiny tank in a small wheely backpack, but even that would twist so much while she was wheeling it behind her and it was so top heavy it would fall over all the time. So, my mom and I came up with this solution. We grabbed her baby stroller, took the cover seat off and put the backpack with wheels on it on the...
Molly's started doing this weird thing that scares me half to death. Whenever I put on her cpap when she's already asleep (maybe 1-2 times a week) she stops breathing, sats drop into the 50s, and she turns blue....after maybe 30-60 seconds of me trying to wake her and stimulating her she finally takes a breath and sats pop back into the 80's and I usually have to add O2 to get her back into the 90's. Because I can't wake her during these, I'm thinking its maybe a seizure? Any thoughts? ...
Kira was awake around 5 a.m. with some coughing fits. Finally around 6:15 the nurse came to ask me something about Kira then. So I got up and we suctioned her, gave her a drink of water, then her Albuterol & Qvar. We finally got her back to sleep, but it wasn't fun. She was coughing so much that she looked like she was choking. :( And I'll complain more about this later, but I'm growing very tired of our nurses. They don't appear to be able to make any decisions or know what to do at times....
I'm feeling very discouraged...Brooke still has an AHI of 20 while using the Bipap and because she won't tolerate a pressure increase Sleep docs couldn't come up with anything to help other than 35-45 degree angle and some kind of Velcro band to keep her from curling up in her sleep (which makes the Bipap less effective and makes her swallow air). I brought up reflux as possibly connected to her hypopneas and they didn't think it was worth investigating because the fundo solution would be worse...
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