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Jonahsmom
05-02-2009, 10:28 AM
Hi everyone! I have another question. As a reminder, my son Jonah is 12, has Down syndrome, and has been decannulated since he was 2. We are trying to avoid re-traching him...

Jonah's last sleep study shows continuing problems with hypoventilation and extremely elevated carbon dioxide levels, as well as serious desaturations.... pulmo is mostly concerned with the hypoventilation at this point. Jonah will not tolerate CPAP, which would potentially help. I'm really afraid we're running out of options for Jonah....pulmo says a trach and vent at night time is the BEST option....but is willing to consider other options, due to our not wanting to trach Jonah again, potentially for a lifetime.

My questions are: outside of PAP therapy, or trach/vent, is there anything else at ALL that I can try to help Jonah? He is currently on oxygen, and that helps with the desats, but does nothing for the hypoventilation and apneas.

We are considering a Nissen to address his reflux, that doesn't seem to respond to medication. Pulmo is somewhat hopeful that stopping the irritation from the reflux could help Jonah....at least with his apneas.... anyone else have a Nissen to help with sleep apnea? Was it successful?

Thanks guys, and I am learning so much from reading here....

Anji and Jonah
www.caringbridge.com/visit/jonahedge

Christamae
05-02-2009, 04:23 PM
Oxygen alone is a bad treatment for sleep apnea. It encourages shallow breathing and the CO2 increases.

Please take this seriously. Sleep apnea is dangerous. It strains the heart. It causes anxiety. It damages the brain. It interferes with learning. It causes irritability and behavior problems. You get headaches. You have nightmares. You are constantly sleepy, feel unrested, and gross.

A fundoplication will do nothing for sleep apnea.

My suggestion: Try a Bi-pap. It is a lot more comfortable than a CPAP. Try different kinds of masks-nose, nasal pillows, full face, and mouth are available. Develop a positive reinforcement/ reward schedule for using the mask. The machine takes about two weeks to adjust. A trach is a big change but sleep apnea is dangerous.

bradensmom
05-02-2009, 05:49 PM
Braden was on Bipap for Hypo-ventilation. We tried O2 due to desats, but after sleep study results we went to Bipap. CPAP didn't do the trick.
NOTE: He is not on any support now. His spinal fusion really made a difference in his breathing.
Amy

Kaylie
05-02-2009, 06:19 PM
Hi everyone! I have another question. As a reminder, my son Jonah is 12, has Down syndrome, and has been decannulated since he was 2. We are trying to avoid re-traching him...

Jonah's last sleep study shows continuing problems with hypoventilation and extremely elevated carbon dioxide levels, as well as serious desaturations.... pulmo is mostly concerned with the hypoventilation at this point. Jonah will not tolerate CPAP, which would potentially help. I'm really afraid we're running out of options for Jonah....pulmo says a trach and vent at night time is the BEST option....but is willing to consider other options, due to our not wanting to trach Jonah again, potentially for a lifetime.

My questions are: outside of PAP therapy, or trach/vent, is there anything else at ALL that I can try to help Jonah? He is currently on oxygen, and that helps with the desats, but does nothing for the hypoventilation and apneas.

We are considering a Nissen to address his reflux, that doesn't seem to respond to medication. Pulmo is somewhat hopeful that stopping the irritation from the reflux could help Jonah....at least with his apneas.... anyone else have a Nissen to help with sleep apnea? Was it successful?

Thanks guys, and I am learning so much from reading here....

Anji and Jonah
www.caringbridge.com/visit/jonahedge

Hi,
I cant remember if you said if Jonahs tonsils and adnoids r removed, wait i think you said they grew back right, Have they been removed again? i dony know of any other things other than what you mentioned, maybe someone else does tho. I can tell you that if you had to use cpap or bipap for along period you will probably need a trach, because those masks and so forth over time will eventually do some damage to the face somwhere down the road. i know several families who its happened too. i know that you dont want to have a trach put back in and start back down this road again, but in the end it may be the best for Jonah given whats going on. does he have any structural issues within his airway that could need surgery that could be causing the problems? has he had a Bronch lately? i sure hope that the answer is found soon and you can start on a treatment plan. please take care and let us know

Melisande
05-02-2009, 11:47 PM
Long term high CO2 causes lots of very serious problems. Vent via trach is the gold standard, especially if he won't tolerate a mask. There's also negative pressure ventilation, but it's what used to be called an iron lung. Now, they're like a turtle shell you wear, which may be worse than the mask depending. It only works if you have a good airway.

If it's hypoventilation due to obstruction, surgery might help.

Jonahsmom
05-03-2009, 12:12 AM
Thank you for the reply. We have tried both bi and c pap for Jonah. We've tried the desensitization therapy to get him to tolerate it.....but it's been 8 months now and we get nowhere. Cognitively, there is just no reasoning with him. It scares him, and he fights, then he hyperventilates (and sometimes passes out) and this can literally go on all night long....every night....perhaps when he's older....but we're so afraid of causing heart/lung damage while we're waiting for him to "get older".....



Oxygen alone is a bad treatment for sleep apnea. It encourages shallow breathing and the CO2 increases.

Please take this seriously. Sleep apnea is dangerous. It strains the heart. It causes anxiety. It damages the brain. It interferes with learning. It causes irritability and behavior problems. You get headaches. You have nightmares. You are constantly sleepy, feel unrested, and gross.

A fundoplication will do nothing for sleep apnea.

My suggestion: Try a Bi-pap. It is a lot more comfortable than a CPAP. Try different kinds of masks-nose, nasal pillows, full face, and mouth are available. Develop a positive reinforcement/ reward schedule for using the mask. The machine takes about two weeks to adjust. A trach is a big change but sleep apnea is dangerous.

Jonahsmom
05-03-2009, 12:16 AM
Thanks for the info on the long term mask wearing...I hadn't heard/read or been told that by the doctors.

Yes, Jonah has had his tonsils and adenoids out, twice. We're trying everything we can to keep from traching him again....and we don't want to wait too long, and keep searching and looking....but I feel like I have to try every thing out there that even has the potential to help Jonah before we do that again....

This is a wonderful place to find information, and I'm learning so much! I certainly wish this site had been available 10 years ago when Jonah was first trached!

Hi,
I cant remember if you said if Jonahs tonsils and adnoids r removed, wait i think you said they grew back right, Have they been removed again? i dony know of any other things other than what you mentioned, maybe someone else does tho. I can tell you that if you had to use cpap or bipap for along period you will probably need a trach, because those masks and so forth over time will eventually do some damage to the face somwhere down the road. i know several families who its happened too. i know that you dont want to have a trach put back in and start back down this road again, but in the end it may be the best for Jonah given whats going on. does he have any structural issues within his airway that could need surgery that could be causing the problems? has he had a Bronch lately? i sure hope that the answer is found soon and you can start on a treatment plan. please take care and let us know

Jonahsmom
05-03-2009, 12:19 AM
Long term high CO2 causes lots of very serious problems.
If it's hypoventilation due to obstruction, surgery might help.

Can you elaborate on the long term effects of high CO2. His doctors aren't very forthcoming when I ask them exactly what those long term effects could be...and I'm not finding much on the 'Net either. I'd love to know exactly what complications could arise....

Jonah has had 4 surgeries to address the obstruction in his airway. His airway is now open....just swollen, irritated, filled with secretions.... presumably from reflux/aspiration.... so the next step is the Nissen to help with that...

Jonahsmom
05-03-2009, 12:23 AM
A fundoplication will do nothing for sleep apnea.

.

Missed this the first time around. According to Jonah's doctors, IF the reason that Jonah's airway is swollen, irritated and filled with secretions is truly from the reflux and aspiration of stomach contents....the Nissen WOULD help....by stopping the irritation. It makes sense to me....but perhaps I'm just grasping at straws?!?!

The problem in this whole scenario is that no one knows exactly why his airway is ths way....and everyone is just making an educated guess that the cause IS TRULY reflux/aspiration.....so incredibly frustrating to me.

bradensmom
05-03-2009, 10:16 AM
Anji,
Braden too had a terrible time getting used to his bipap.. The only way that we could use it would be to give his nightime meds (they make him very sleepy). I would put the bipap under his head and ready to go on when he went to sleep. After he was sound asleep, I would slip the bipap on but not turn it on full force at first. I would have to ramp it for 9 minutes. Then and only then, he would tolerate it until he woke up. When he woke up, it had to come off immediately. It was very trying but we did it for over a year.
Braden's pulmo said that the LTV was more tolerable for kids. Have they talked to you about that??
Amy

Jonahsmom
05-03-2009, 10:41 AM
Anji,
Braden's pulmo said that the LTV was more tolerable for kids. Have they talked to you about that??
Amy

I don't know what an LTV is.....

Melisande
05-03-2009, 10:53 AM
Here's a link to e-medicine about childhood sleep apnea. Although it is primarily about obstructive sleep apnea, in hypoventilation, the risks are the same.

http://emedicine.medscape.com/article/1004104-overview

Niff
05-03-2009, 01:02 PM
I hate to be a Debbie Downer, but the trach w/vent at night would be the way I would go if my child wasn't tolerating a nasal CPAP or BiPAP. You can do the same therapies with a home vent, and it would be less tramatic because it wouldn't be a mask that Jonah is already afraid of.

While it's true that the Nissen may help with the reflux which may (or may not) be damaging Jonah's airway, it's not going to change dramatically overnight. It would take weeks and months (possibly years?) to undo the damage, and even then it's not a guarantee that the problem of sleep apnea will be fixed. Have they done a pH probe to test for reflux to ensure that it truly is a major problem?

As another mother was saying, continued excess of CO2 in the blood is very damaging to the lungs. It can cause ARDS, and inevitably lung failure. It can also cause seizures.

ETA: An LTV (http://www.viasyshealthcare.com/ltv/) is a series of home ventilators. We use it to deliver CPAP at night for Mackenzie. They're very portable and easy to use.

kirafaesmom
05-03-2009, 01:39 PM
Ack!!!...Seizures? Seriously? Ok...that's it; we need this sleep study ASAP. Part of what landed us on the floor last night is her increased seizures. The more I learn about hypoventilation the higher I rank it on my "ARGGG" list. Seizures have had that top honor for a very long time. It's been interesting following this thread. I haven't posted on it because I didn't think I had anything to add. However, our pulminologist is concerned about central hypoventilation in Kira because of the increase in autonomic instability. We hadn't covered the seizure aspect. I am with Niff. I totally get that you would want to avoid a trach again. However, there is life after a trach. IF...and I do say IF Kira's breathing patterns are in anyway responsible for the significant issues we deal with now, then I would take this hypoventilation very seriously. I really feel for you; this is a HUGE decision. I can't imagine having to contemplate going back to the trach. My prayers are with you as you decide on the best treatment plan.

T-bone
05-03-2009, 01:55 PM
My daughter hypventilates when she sleeps. She has the trach so she can be hooked up to the vent while she sleeps. She is 8 right now and in time we will eventually switch to using the bi-pap. For her condition there really aren't too many other ways to keep her ventilated. Melisande suggested the Iron lung. There is also something called a Pneumobelt. It is a belt that wraps around the mid body and it is connected to the LTV ventilator. But the person has to almost sit up to sleep as it works with gravity.

I have researched every way to vent Abby outside of the trach and vent. There really isn't many options at all. We have tried the mask with her and she hates it. We are going to wait till she is more mature, thinking sh emay accept it a bit more.

The trach and vent sucks, big time. But it is also the best way to make sure that she is being vented properly and that her sats are good and there is no strain on the heart.

Such a hard decsicion. Good luck.

Tess

Kaylie
05-03-2009, 08:13 PM
Hi,
so Jonah does have a obstruction of the upper airway is this correct?You said that he has had his tonsils removed 2 times (which procedures have they used to remove them) how did he do after the tonsils were removed until they grew back? when was the last time he had a bronch ?

Jonahsmom
05-03-2009, 09:01 PM
Hi,
so Jonah does have a obstruction of the upper airway is this correct?You said that he has had his tonsils removed 2 times (which procedures have they used to remove them) how did he do after the tonsils were removed until they grew back? when was the last time he had a bronch ?

Technically, Jonah's areas of obstruction have all been addressed. He had T&A twice (once at 15 months, which led to his trach the first time) and again 2 1/2 years ago. I'm not certain which technique was used, though...

He had his lingual tonsils removed, and also a midline partial glossectomy (partial tongue removal). He had a supraglottoplasty for laryngomalacia also. He was bronched a few months ago.

Jonah's upper airway is just swollen, red, irritated and filled with secretions. He also has a diagnosis of bronchiestasis (sp?) which has remained stable for about a year now. Alot of assumptions on the doctors part....assuming the bronchiestasis is from chronic aspiration/reflux. They are now also assuming the irritation in his airway is from the same....and hoping that the Nissen will stop the reflux/aspiration, thereby stopping the irritation, and stopping any further damage to his lungs.

To complicate things further, Jonah has had 3 open heart surgeries, and has mild pulmonary hypertension resulting from the heart defects. So it's kind of hard to figure out what is what with him....but we finally have a pretty confident diagnosis of his cardiac status being stable. They feel that now is the time to "work out" the respiratory issues, since he is stable cardiac wise.

Confusing, I know. I just so totally don't want to trach him again, and vent him at night time. I'm so scared that he won't be able to understand.... he will somehow hurt himself....he will drown himself in the bathtub.....just lots and lots of unknowns...and fears....

Thanks guys for listening. We are praying, researching, trying to make the best decision that we can for Jonah. You guys are wonderful and have been a tremendous help!

Anji

Niff
05-03-2009, 09:51 PM
The vent may help with his pulmonary hypertension as well.

bradensmom
05-03-2009, 11:32 PM
Anji
The LTV can be used without a trach. You might ask about it. Just an option. It may take a little sleep med until he gets used to it.

Jonahsmom
05-04-2009, 07:15 AM
Anji
The LTV can be used without a trach. You might ask about it. Just an option. It may take a little sleep med until he gets used to it.

How does that work? When I google LTV I get some pretty strange things... Can you tell me abit more?

Thanks!

Jonahsmom
05-04-2009, 07:24 AM
How does that work? When I google LTV I get some pretty strange things... Can you tell me abit more?

Thanks!

Found it. Googled LTV ventilator....

It's a different form of bi-pap, right? Jonah simply won't tolerate the mask and the pressure....we've been working with him for 8 months....and I can't ever see the mask working for him.... at least right now. He simply can't understand, and is now big enough and strong enough at 12 years of age, to fight us too much.....

Another question for those whose child is on a vent at nighttime (or anytime really).....if Jonah can't stand the pressure of the bipap now.....how do I know he wouldn't fight it through the trach also? Anyones child fight that? What must that feel like? ALthough, I really think the problem with Jonah is the mask/nasal pillows on his face, and the air blowing so hard through there...but I'm assuming the air would still be blowing even if he were hooked up through a trach...right? I just gave myself another thing to worry over.... what if we were to trach him, but he wouldn't tolerate being vented?

Sometimes I feel like I'm chasing my tail here....and at some point I just have to jump off the crazy ride and make a decision....but there is safety in the crazy ride right now....

Anji

Niff
05-04-2009, 07:35 AM
Found it. Googled LTV ventilator....

It's a different form of bi-pap, right? Jonah simply won't tolerate the mask and the pressure....we've been working with him for 8 months....and I can't ever see the mask working for him.... at least right now. He simply can't understand, and is now big enough and strong enough at 12 years of age, to fight us too much.....

Another question for those whose child is on a vent at nighttime (or anytime really).....if Jonah can't stand the pressure of the bipap now.....how do I know he wouldn't fight it through the trach also? Anyones child fight that? What must that feel like? ALthough, I really think the problem with Jonah is the mask/nasal pillows on his face, and the air blowing so hard through there...but I'm assuming the air would still be blowing even if he were hooked up through a trach...right? I just gave myself another thing to worry over.... what if we were to trach him, but he wouldn't tolerate being vented?

Sometimes I feel like I'm chasing my tail here....and at some point I just have to jump off the crazy ride and make a decision....but there is safety in the crazy ride right now....

Anji


:) I love the fact that you're considering all possible solutions. It just goes to show that you're taking this very seriously and you want the best for Jonah.

Kids can fight the vent, but that's typically when there's a rated breath involved (like on SIMV). Mackenzie's gotten antsy a couple times when being switched from the trach collar to her vent, but after a minute or two she settles out just fine. On the other hand, there have been many more times where she was really fussy and putting her on the vent is what calmed her down. So there's no clear cut answer.

I would think that Jonah wouldn't fight so hard without the mask, but I would definitely talk to him and tell him what you're doing and why. It may be reassuring to hear you talking in a soothing voice while setting it up. I'd imagine it can be scary.

scm
05-04-2009, 09:46 AM
I can sympathize with you, my son was decannulated last July and requires CPAP at night for laryngomalacia. He is pretty non compliant with it too :hairpull:

What do you do when he refuses the mask?

Also, does he only need the support at night? Do you know for 100% sure that the c/bipap is effective for him? Just trying to gauge how far you should go with fighting him on it....

We've had to try lots of different techniques to get the mask to work, right now I wait until he is asleep to put it on and he does ok. The moment he wakes up in the a.m. I have to race in his room and take off the mask. Alot of nights, he is up every few hours with it.

If I can think of any other tricks that worked for us I will certainly let you know.

Good luck making this difficult decision:hug:

Kaylie
05-04-2009, 11:35 AM
Anji
The LTV can be used without a trach. You might ask about it. Just an option. It may take a little sleep med until he gets used to it.

Jonah would not be able to take sleep meds with having the Apnea issues, at least thats whay we have been told, we were told unless absolutely necessary because that would make the apnea much worse and then could cause something else .


Angi,
i thought u said that Jonah had a obstruction in his airway recently?

Jonahsmom
05-04-2009, 03:59 PM
Jonah would not be able to take sleep meds with having the Apnea issues, at least thats whay we have been told, we were told unless absolutely necessary because that would make the apnea much worse and then could cause something else .


Angi,
i thought u said that Jonah had a obstruction in his airway recently?

The doctors won't allow any type of sleep med. We wanted to try that with the pap, but....they say it's too dangerous.

The only real obstruction right now is the swelling and secretions. When they scope him, his airway is open, just much smaller than it should be due to the swelling and secretions. It is irritated, red, with lots of "bumps"... presumably due to the reflux and aspiration. There is still a bit of laryngomalacia present...but ENT won't operate on it until we have the swelling issue under control....but it's not nearly as bad as it was before his last supraglottoplasty....so I don't think that's causing all the problems.

Just received the printed results of his last sleep study, and am waiting for a call from the pulmo to discuss the hypoventilation. It just keeps getting worse....his apnea events are actually better than in December! So that's a good thing, right? He went from an RDI of 33.1 down to 16.3. Nothing new, nothing changed, so not certain why the change. Still in the severe range, but it IS getting better....However, his CO2 levels are horrible....does anyone know what questions I need to ask about that? This hypoventilation is a new diagnosis for Jonah, in the last year or so. His sleep study states "There was 100% of the study time spent with and end tidal CO2 higher than 50. The average end tidal CO2 was 54 with a maximum of 61. However, the average transcutaneous CO2 was 67 with a maximum of 74. Evidence of signifcant hypoventilation was observed, with increased work of breathing and paradoxical breathing."

What does all of that mean? His CO2 just keeps going up....when it first became an issue around a year or so ago, it was averaging 47, with maximums around 52 or so..... How can this get worse, but his actual apnea events and hypopnea events get better?!?! I'm getting really confused, and can't wait to talk to his doctor....

Thanks so much for taking the time to talk to me. I really am trying to find anything that will help Jonah.....and want to ensure that I've tried all the options before we consent to a trach....knowing that it will more than likely be for a lifetime.

Anji

Jonahsmom
05-04-2009, 04:07 PM
I hate to ask a stupid question....but here goes anyway! I assumed (that's always dangerous) that being on a vent at home would be like being in the hospital on the vent....where it gives him a set amount of breaths per minute. Are you saying that that's not always the case? How would that work? If Jonah didn't have to "fight" the vent breathing for him, I could see him tolerating it a whole lot better....but anytime he's on the vent in the hospital, we have to literally paralyze him because he fights....I'm assuming he's fighting the "breaths"? Did that make any sense at all? It's hard to articulate what I'm thinking....I hope you understood....

Anji

:) I love the fact that you're considering all possible solutions. It just goes to show that you're taking this very seriously and you want the best for Jonah.

Kids can fight the vent, but that's typically when there's a rated breath involved (like on SIMV). Mackenzie's gotten antsy a couple times when being switched from the trach collar to her vent, but after a minute or two she settles out just fine. On the other hand, there have been many more times where she was really fussy and putting her on the vent is what calmed her down. So there's no clear cut answer.

I would think that Jonah wouldn't fight so hard without the mask, but I would definitely talk to him and tell him what you're doing and why. It may be reassuring to hear you talking in a soothing voice while setting it up. I'd imagine it can be scary.

Jonahsmom
05-04-2009, 04:12 PM
Yes, he only needs support at night time. We spent a week in the hospital at Cincy trying to get him to accept it....with minimal success. We HAVE to put the nasal pillows on him while he's awake. If we try to do it while he's sleeping, it scares him and he literally will fight me...hitting, biting, etc. We can get it on, not a fun time but I CAN force him to wear it....but as SOON as the air starts blowing...he gets frightened. We've tried ramping him from 4 over a period of 30 minutes....but we were never able to get him to his full pressure of 14 awake or asleep....the best we ever got was 8....and he still snored, obstructed, grunted and woke himself up at that pressure.

I've tried everything I know to do....reassurance, lying with him, holding him, singing, watching television in bed (not a habit that we allow with any of other children!)...but he gets so scared and if I force him to keep it on he hyperventilates. He's passed out on me FOUR times from hyperventilating.... and I'm scared and DO NOT want that to happen again....

Cognitively Jonah functions around a 5 year old level....and I just can't make him understand. He has no "words" for the machine, or the necessity of the machine, and.....it's just frustrating. I just want him to feel good, have enough energy to get through the day without napping, and not have him fall asleep at the dinner table at 6 pm every night....plus I don't want to damage his heart and lungs any further......


I can sympathize with you, my son was decannulated last July and requires CPAP at night for laryngomalacia. He is pretty non compliant with it too :hairpull:

What do you do when he refuses the mask?

Also, does he only need the support at night? Do you know for 100% sure that the c/bipap is effective for him? Just trying to gauge how far you should go with fighting him on it....

We've had to try lots of different techniques to get the mask to work, right now I wait until he is asleep to put it on and he does ok. The moment he wakes up in the a.m. I have to race in his room and take off the mask. Alot of nights, he is up every few hours with it.

If I can think of any other tricks that worked for us I will certainly let you know.

Good luck making this difficult decision:hug:

Kaylie
05-04-2009, 05:09 PM
The doctors won't allow any type of sleep med. We wanted to try that with the pap, but....they say it's too dangerous.

The only real obstruction right now is the swelling and secretions. When they scope him, his airway is open, just much smaller than it should be due to the swelling and secretions. It is irritated, red, with lots of "bumps"... presumably due to the reflux and aspiration. There is still a bit of laryngomalacia present...but ENT won't operate on it until we have the swelling issue under control....but it's not nearly as bad as it was before his last supraglottoplasty....so I don't think that's causing all the problems.

Just received the printed results of his last sleep study, and am waiting for a call from the pulmo to discuss the hypoventilation. It just keeps getting worse....his apnea events are actually better than in December! So that's a good thing, right? He went from an RDI of 33.1 down to 16.3. Nothing new, nothing changed, so not certain why the change. Still in the severe range, but it IS getting better....However, his CO2 levels are horrible....does anyone know what questions I need to ask about that? This hypoventilation is a new diagnosis for Jonah, in the last year or so. His sleep study states "There was 100% of the study time spent with and end tidal CO2 higher than 50. The average end tidal CO2 was 54 with a maximum of 61. However, the average transcutaneous CO2 was 67 with a maximum of 74. Evidence of signifcant hypoventilation was observed, with increased work of breathing and paradoxical breathing."

What does all of that mean? His CO2 just keeps going up....when it first became an issue around a year or so ago, it was averaging 47, with maximums around 52 or so..... How can this get worse, but his actual apnea events and hypopnea events get better?!?! I'm getting really confused, and can't wait to talk to his doctor....

Thanks so much for taking the time to talk to me. I really am trying to find anything that will help Jonah.....and want to ensure that I've tried all the options before we consent to a trach....knowing that it will more than likely be for a lifetime.

Anji
Hi Angi,
i too am very sorry that you have to go thru these decisions, making any of these choices are by no means what anyone wants for the child or for their family. its also alot to take in all at once to help make the best choice for Jonah, just keep gathering info and start to write down all the questions and some answers so when u do meet with the Docs you can understand more of whats ahead. i knew Jonah would not be able to take meds for sleeping due to what he has been diagnosed with, when Kaylie had a sleep study a while back they told us not to also unless absolutely necessary. As hard as this all is all of us here only want what is best for our children and grandchildren, it break my heart to know that you all are going thru so much.

bradensmom
05-04-2009, 11:02 PM
Anji
I'm sorry the options seem so limited.. I definitely feel your pain. Often when Braden is sick, the treatment that is recommended is just not tolerated at all by him. I'm always looked at like I'm crazy because these are the NEWEST and BEST treatments out there. Doctors and nurses never really believe that he will just not tolerate it, so I hope that you can find a suitable solution for Jonah soon. You know him best. Not anyone else. GOOD LUCK!!!
Amy

KJKK8437
05-04-2009, 11:32 PM
I hate to ask a stupid question....but here goes anyway! I assumed (that's always dangerous) that being on a vent at home would be like being in the hospital on the vent....where it gives him a set amount of breaths per minute. Are you saying that that's not always the case? How would that work? If Jonah didn't have to "fight" the vent breathing for him, I could see him tolerating it a whole lot better....but anytime he's on the vent in the hospital, we have to literally paralyze him because he fights....I'm assuming he's fighting the "breaths"? Did that make any sense at all? It's hard to articulate what I'm thinking....I hope you understood....

Anji

Anji, my son used to fight the vent, too. It isn't uncommon for some kids to just do that. I think that many of us here understand exactly what you are saying.

A vent can deliver CPAP or Bi-pap and does not actually have to deliver "breaths". There are kids on the board who use the vent for CPAP or Bi-pap.

We were only ever ventilated temporarily, and generally under sedated conditions, like you mentioned, so I'm not a great resource. I just wanted to tell you that yes, indeed, you are making sense.