SAMUEL DID! If you have been to our house, you know what I'm talking about :) If not, let me paint the picture...
Samuel's machines make quite a bit of noise... here are the players involved:
- The concentrator is what provides Samuel his higher level of oxygen. We breath 21% oxygen, Samuel needs about 30% oxygen. For traveling we hook up to an oxygen tank, which is silent but not realistic to use for day-to-day needs. So generally we hook up to the concentrator. It hooks up to the vent, the trach collar, and the HME.
- The ventilator is the machine that provides the pressure support, humidified air, and at night actually provides rhythmic breathing. We hook up to the concentrator for a higher level of oxygen.
- The trach collar is what allows Samuel to be off of the ventilator, so no pressure support, but still provides humidified air and hooks up to the concentrator to provide a higher oxygen level. We watch him carefully to be sure his oxygen saturation stays up and his work of breathing stays down :)
- The thermovent, or HME (heat moisture exchange), is similar to the trache coller but so much better! It looks like a little barrel and has little filters that provide the heat/moisture exchange. It attaches directly to the end of the trache and has a little place to plug in the oxygen concentrator. Like the trache collar, it provides humidified air, but not as much... our noses humidify the air we breathe, but because he breathes through his neck, he would get extremely dry air.
When Samuel first came home, he was on the ventilator and an oxygen concentrator 24/7. The concentrator was heavy duty, with the ability to go up to 10 liters of oxygen. Samuel generally needs anywhere from 2 - 4 liters, but they wanted us to have the ability to get higher numbers, just in case. (I hate "just in case," but I am so thankful to feel prepared :) ) About two months ago, we got a new concentrator... ours was having issues, and when the new one came they felt we could go down a notch to a concentrator that tops out at 5 liters. Yea! The added benefit was also a reduction in the noise - BIG TIME! We thought we had hit the jackpot! I can't even describe the difference!
Here's an example... when we had the heavy duty concentrator, we had to turn the volume on the radio up to at least 20-25 in order to sing with our kids. With the new concentrator, we can have a dance party at a volume of 12-15! Although we still turn in up to 20 for Kookaburra :)
Then came the trache coller... so excited to start coming off of the ventilator for a few hours per day! Then we turned on the trache collar... I love it for my baby, but oh my goodness, it's louder then the ventilator! Back up to at least 18-20 on the radio volume.
We worked our way up to eight hours on trache collar per day! WOO HOO! Then, it got better :) At our last pulmonology visit, we were prescribed the thermovent/HME and told to attempt turning off the concentrator (no extra oxygen) for a few hours per day. AGH!!!! I almost fell on the floor... instead I just got teary. We are making progress!
Last week we started turning off the concentrator for up to four hours throughout the day. So far, so good! His O2 saturation's are great, and he doesn't seem to mind at all. It is CRAZY!
This week, we started using the thermovent/HME, and it is AMAZING! No ventilator AND no trache collar while we are using it! We could probably turn the radio down to 5 and still hear it :) Plus, Samuel seems to love it... he has been so happy the last two days! He generally starts to tire out around 6:30pm and we do everything in our power to keep him awake until his bedtime... since the thermovent/HME, he is a rock star even at 7:30pm.
I feel like there is a calm feeling in our house that hasn't been there before. I still worry, I am still thankful for every day that Samuel is home and our family is together, and even though I don't have too much time to over analyze, I am terrified of Samuel going back to the hospital. BUT, the good news of pushing ahead with Samuel's breathing, combined with the new low volumes at our house, changes the atmosphere in our home.
Didn't mean to write so much, but got going and couldn't stop :) Here are a few visuals...