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suzanne2545
04-20-2009, 05:42 PM
Cincinnati called today. The current plan is to put Parker on CPAP. We will be calling on Wednesday to schedule a bronch with Dr. Cotton and Dr. Wood from pulmonology. We will also be discussing the cyanotic episodes with Dr. Wood at that time, if not before.

From my brief discussion today they think that Parker's tongue is causing the bulk of the issue. It is falling back into his mouth and closing his airway up.

Since the tongue is an issue I'm assuming we will need CPAP with a face mask? Are there any particular things about this we need to ask about, address, look for? If I knew then what I know now there would have been some things I would have checked into about the trach equipment vs just letting the hospital dictate what we needed. I'm trying to be a little more educated this time around. Any suggestions?

I'm being negative here but given a strong family history on both sides of the family I'm guessing that CPAP is going to be for life.

Thanks, in advance, for any tips and thoughts.

bryantem
04-20-2009, 06:15 PM
Does he still have is trach? I don't have any answers. I just wanted to say good luck!
________
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suzanne2545
04-20-2009, 06:18 PM
No. He was decannulated just over a year ago. Still has some issues with his breathing at night that need addressing before they cause some collateral damage.

Ann
04-20-2009, 06:23 PM
Hopefully Christina (scm) will see this. Max has been on CPAP post decan as well. Sorry for the bump in the road, I'm sure it's frustrating. :hug:

bradensmom
04-20-2009, 06:38 PM
Braden was on Bipap for quite a while which is very similar to Cpap. Braden tolerated a nasal mask much better than a full face mask. You will need to work with your respiratory therapist to figure out which type he will tolerate the most. You can choose a full face mask, nasal mask, or nasal cannula. If you have any questions please ask. I will help you all that I can. One thing that you have to watch for is skin breakdown. If you need some duoderm, let me know. I have lots.
Amy

Kaylie
04-20-2009, 06:54 PM
although i dont have alot of knowledge with cpap at this point, we may have to be exploring it also, especially if we ever get closer to decan, so i will be interested in seeing what people say, my thing is i cant see Kaylie wearing a full face mask, i dont know what your thoughts with parker will be, i mean i know adults who will not wear them,sorry that you have to endure this but i do hope that whatever they decide and figure out that first and foremost it helps Parker. please know you guys are in our thoughts..i hope that u can soon get some much needed rest as well as Parker.. let us know when u can what they decide..

drct1245
04-20-2009, 07:50 PM
Good luck Suzanne, I sure hope this helps Parker's sleeping.

suzanne2545
04-20-2009, 07:57 PM
although i dont have alot of knowledge with cpap at this point, we may have to be exploring it also, especially if we ever get closer to decan, so i will be interested in seeing what people say, my thing is i cant see Kaylie wearing a full face mask, i dont know what your thoughts with parker will be, i mean i know adults who will not wear them,sorry that you have to endure this but i do hope that whatever they decide and figure out that first and foremost it helps Parker. please know you guys are in our thoughts..i hope that u can soon get some much needed rest as well as Parker.. let us know when u can what they decide..

I'm having a little trouble getting my head around Parker wearing a full face mask as well. I'm not even sure if a nasal canula would be an option for him. That is part of what I'm trying to figure out in advance. My MIL couldn't stand the mask and now uses and loves her nasal pillow. My uncles all use the full mask.

lynn
04-20-2009, 08:47 PM
Hope everything goes well and you figure out how to stop his apnea

Hope
04-20-2009, 09:27 PM
Suzanne - I haven't commented about Parker's newest adventures because we, too, are going through our own post-decann apnea fun-time with Shelby's seizures, plus she had a really weird almost like her airway was closing down episode (just once - she was crying and very upset). *sigh* Anyway the whole thing is distressing, depressing, upsetting, worrisome ... I've been reading your posts & others' responses closely however. Like everyone else, I've been concerned about Parker and want to know the outcome of all this.

Sorry, no advice about cpap, just wanted to let you know I've been following this closely and you all have been in my thoughts and prayers.

:hug:
Hope

Ainsley's Mom
04-20-2009, 10:51 PM
I'm having a little trouble getting my head around Parker wearing a full face mask as well. I'm not even sure if a nasal canula would be an option for him. That is part of what I'm trying to figure out in advance. My MIL couldn't stand the mask and now uses and loves her nasal pillow. My uncles all use the full mask.

That is a family history. So you know quite a bit about it I'd guess. Or at least more than I know which is 0. I'm glad that they think the CPAP is the answer. I'm sure it's a bit of a downer but at least it can be treated in this way. Maybe it's no worse than wearing the warm mist collar for the trach? Well, I hope you are able to get him a setup that he is comfortable with and will use. Do let us know how things go. I'll be thinking about you and hoping some good sound sleep, for all of you, is just around the corner. :hug:

TommysMommy
04-21-2009, 01:01 AM
Rob's side of the family has sleep apnea. He, his mom and his grandpa all wear cpap at night. Both he and his grandpa use full face masks, and his mom uses the nasal pillow. The difference is that Rob and his grandpa are mouth breathers when they sleep. His mom is not. Rob was told if he wanted to use the nasal pillow, he'd have to wear a chin strap. That lasted about 5 minutes for him.

Rob's cpap machine is very nice. It has a humidity chamber with heatbuilt in. His mom's doesn't have any humidity at all.

scm
04-21-2009, 07:14 AM
I really wouldn't recommend the full face mask, unless there is proof of need. There are several risks: a) if he were to vomit, reflux, drool, etc all that would be forced back down his airway/lungs. b)I'm not sure about ALL CPAP machines but on ours, there is no strong alarm to alert you if power is cut or venitlation is disrupted and in that case they'd be suffocating in the mask covering nose and mouth.


A couple of necessary points: The fit of the mask is probably the biggest obstacle in the use of CPAP. Especially in kids our size... there aren't a lot of interfaces available, and the ones made for children haven't been the best fit for Max. Many of our earliest struggles w. CPap were overcome by changing out the mask. You should also have more than one style on hand, because skin breakdown CAN be an issue and it helps to rotate masks to create different pressure points.


I wasn't aware when we got our CPAP machine, but there are some that have an adjustable range of pressure. I would request that, defintiley. For example, it gets set to a pressure range and then self-adjusts to what your child needs. In our case, the pressure is fixed. It's a cumbersome process to change the pressure (in the middle of the night, in the dark, trying not wake Max up) manually every time he needs an adjustment. I have found that the least amount of pressure needed is the most comfortable for Max, but if he doesn't get enough then he wakes because he can't sleep. In kids especially that toss and turn the severity of the obstruction can be positional so this may come into play.

I know Parker didn't sleep with a pulse ox before- but we very much rely on ours. I can tell if Max is comfortable by his sats and hearrate, and it alerts me if he is having trouble with the mask or if there is an air leak, etc. I'd recommend using the pulse ox every night until he is in a good routine with the CPAP.




I'm being negative here but given a strong family history on both sides of the family I'm guessing that CPAP is going to be for life.

.
Don't worry for a minute about how long he will be on this. You'll go nuts. Unless Parker miraculously takes to the CPAP- there will definitley be an adjustment period! That won't last forever, even if the need for CPAP does.

JWorthington
04-21-2009, 07:51 AM
I think you've got lots of good info, especially from christina. I hope you can find a mask that works well for Parker, I know Sam certainly wouldn't tolerate anything on his face - that's one of the reasons he's had his trach for so long! Good luck:hug:

Julie x

Isaac'sMomandDad
04-21-2009, 08:16 AM
Suzanne,

I didn't have any advice to offer, just wanted to offer support and hugs. It sounds like quite an ordeal, but I know you and your family can get through it.


Lara

suzanne2545
04-21-2009, 08:45 AM
Christina,

Thanks so much. This is exactly the kind of information I need. I'm going to call pulmonolgy today and try to figure out what the process is for ordering a machine. Your points give me lots of things to consider and ask about.

Thanks so much!

JacobKaden
04-21-2009, 10:21 AM
I was just diagnosed with sleep apnea and I absolutely can NOT tolerate the CPAP mask, even the nasal pillows :eek: as I tend to be claustrophobic. I will say though that the nasal pillows are far more comfortable than a full face mask! Christina has given you great advice. Best of luck with this Suzanne.:hug:

aydenava
04-21-2009, 10:46 AM
Im sorry Suzanne,I know this must suck(for lack of a better word),but you will get through it & Parker too & eventually it will be just as "normal" as no C-pap,prayers for Parker...........Angie

Melisande
04-21-2009, 01:26 PM
I would ditto what Christina said about the mask issues. Also, from what I've read, kids who are little like Parker in particular can have serious facial dysplasia issues if you don't rotate around mask types. They can need reconstructive surgery as a result if you don't watch this closely. You have to get a good seal on a mask and in order to do that, the masks fit tightly on the face. Christina had some excellent advice. Keep us posted.

suzanne2545
04-21-2009, 05:30 PM
I was just reading last night on the facial dysplasia. It is on my list of questions to ask. So many new things to learn! And maybe back to a sat monitor - egads!

mylesmom
04-21-2009, 08:26 PM
It was one of the things discussed with us when we were in hospital last month. The Respiratory Dr. said Myles was NOT a candidate for it because of his age. She also mentioned how it can change the face too.

Luckily so far we don't seem to need any other respiratory support but I totally understand your concern and fear because we were there for a short time...........

Thinking of ya!

madelyn and rynns mom
04-21-2009, 08:59 PM
I don't have any advice on this, just wanted you to know that you both are in my thoughts and prayers!!

Love Kris:hug:

alizesmom
04-22-2009, 07:51 AM
Just sending hugs. Karen