4 year old update

I just wanted to update those of you that have followed our journey.

Our son started his low flow oxygen therapy Thursday night for his Central Sleep Apnea and oxygen desatruations. He is using a nasal canula and it looks like it is going to take him a while to get used to it! He tore it off all night the first night but did manage to leave it on most of the night last night. The DME brought us oxygen tanks instead of an oxygen concentrator, the reasoning is that the oxygen is purer from the tank than from the concentrator and since he is on low flow therapy it is recommended that we use the tanks. (LOTS of tanks in the house!) The only issue that I have with the DME so far is that they brought infant canulas for him and he needs the pediatric size. They needed to order them and we are using the infant ones while we wait. The infant ones pinch the center of his nose and he DOES NOT like it! He has only been on the oxygen two nights and he has had a lot more energy in the mornings and we are hoping this is due to the fact that he is sleeping better at night!

We had an appointment with the Neurologist on Thursday: He thinks that the low flow oxygen therapy will help with the apneas and low oxygen saturation; he is increasing the Iron supplementation and going to recheck our son’s Iron levels in three months; he wants our son to go back to the Pediatric Pulmonologist to relook for underlying issues, they got a cancellation so we go the end of next week; and he wants us to also go back to the Cardiologist as the Cardiologist was looking for the reason for the vaso vagal effect and not for an underlying issue for the Central Sleep Apnea.

I will try to keep you all updated but I am currently down with a viral infection.

Blessings to all of you and wishing you all sleep well!

L. Mother of three angels, one of whom forgets to breathe.

Please remember to take care of yourself, momoftree.
Thank you for updating us -- I hope things will now keep imroving for you child who forgets to breathe!

She is not real, don't waste your time.

Kenton wrote:She is not real, don't waste your time.

?

Thank you for the update. I know that you are not getting much sleep while watching him. My heart goes out to you. I hope things get evened out soon.

Bev

Kenton wrote:She is not real, don't waste your time.

Kenton, she most definitely is NOT a troll or anyone trying to rile up the forum. She has been here over the past year hunting for answers for her son.

Momoftree, thank you for your update. Here's hoping he continues to wake revived and feeling better. Good sleep will help in so many ways. Not the least is that you will be able to sleep better.

Best wishes. Our prayers and thoughts are with you.

Momoftree, please ignore the jerks who have invaded the forum as of late........

My thoughts and prayers go are with you; please keep us up to date in your journey.......

Pat

JohnBFisher wrote:

Kenton wrote:She is not real, don't waste your time.

Kenton, she most definitely is NOT a troll or anyone trying to rile up the forum. She has been here over the past year hunting for answers for her son.

Momoftree, thank you for your update. Here's hoping he continues to wake revived and feeling better. Good sleep will help in so many ways. Not the least is that you will be able to sleep better.

Best wishes. Our prayers and thoughts are with you.

I got fed up and spam buttoned it.

I have two boys and I would be heart broken if they had to go through what I am with apnea, I am a special education teacher and just have a soft heart for kids. Hang in there mom sounds like you are on the ball.
Take care

Momofthree, sending prayers your way for a speedy recovery. Hope things are better for your little guy soon.

Linda

First of all thanks to all of you for your support.

John, I wanted to thank you for standing up for me with Kenton as you were one of the first people that I talked to on this forum and your words of wisdom have been appreciated. I have made some great friends and am glad that I found this place. As you know my journey has been long and, just like all of you, it is not always an easy journey.

Scrapper, the invasion of the forum has been bothering me as I used to try to glean information from the posts and now I don’t have time to keep up with them all due to all of the “trolls”. This forum has been a wonderful asset to me and now I almost don’t want to come here and it saddens me. I am so tired with all of the medical issues that the last thing I want to do is read and get upset at what people are saying.

BlackSpinner, Thank you for using your spam button on the person that said I was not real! To the person that said that, I pray that you never have to go through what I have been through with my son, I pray that you never have to do CPR on your own child, I also pray that you have more understanding!

To update those of you that are interested:

DME came again today and brought us a larger oxygen tank, an H-Cylinder. I asked about the dryness and he gave us a Bubble Humidifier to use. I just purchased some steam distilled water to use in it and we will try it tonight. Due to my son’s bleeding disorder I wanted to make sure that we keep the nasal passages moist and try to minimize the chance of nose bleeds. They did not have the pediatric canulas in yet and we are still fighting him with the infant ones as they pinch his nose and are very uncomfortable for him.

I am not sure about the DME and the oxygen tanks. We were using the E-Cylinders over the weekend. Due to the level that our son is on he does not use a full E-Cylinder in one night. The E-Cylinder lasts two nights and leaves us with about 5 hours of oxygen in the tank. They want me to try to use as much oxygen in the tank as I can but there is no alarm to let me know that the tank is empty! I asked them if I am supposed to get up in the middle of the night to change tanks and they said, well I guess just leave the extra in the tank and start a new one.

I called the Neurologist office today to see what the prescription was written for and found out that it was written for an oxygen concentrator. I told the nurse that the DME brought only oxygen tanks and she was going to check with the doctor. I did not think that the DME’s could choose what to give you! Is it legal for them to give us the tanks when the script is written for the concentrator?

All of this is coming at a bad time for me as I am currently very sick myself, but on I go as the entire reason that I am doing this is my wonderful four year old!

Blessings to all of you!

L. Mother of three angels.

Thank you so much for letting us know how it's going. Hope everything keeps getting better and better for your son.

Take care of yourself, too!

Thank you for the update on your little one. Poor little guy. All of this has to be confusing for him. Prayers and good thoughts coming our way.

Laura

Thank you for taking the time to update us. You have friends here praying for you and your beautiful son. Please try to ignore the troll invasion as we're all trying to to. Hopefully he'll give up soon.

Black Spinner, thank you for doing the honors!

An oxygen concentrator is definitely the way to go for long-term O2 treatment, and most come with alarms (besides lasting for a very long time vs 2 nights etc). Working in health care, I immediately wondered as I read why you were using tanks inhome. That's almost unheard of in this day and age of concentrators.

You remain in my prayers. Take care of yourself--ALWAYS. It's really hard when you are the caretaker, but you must!