New Bipap and nasal interface: Not perfect but will work

Yesterday at 6:30pm we finally recieved the shipment of all the parts for her Bipap. We also got the approval from Bio-med her at the hospital to set up the machne in this hospital setting. We were good to go and ready to start her on the machine and schedule she'd be on at home. Unfortunetly, we were all a little upset by the fit of the mask as it looks like its going to swallow her entire face.

Companies such as Respironics who develop and sell these Bipap machines and masks sadly dont make the appropriate nasal/facial interfaces or machines for children that weigh between .7-30 kg (1-66lbs). Why? Because the market for these types of machines and masks is so small that the cost outweighs the benefit. Ethically, they know they should but financially it makes no sence to them. So, this is what they do.

The make adult "petite" sized masks that still fit and run off of the Bipap machine that is meant for someone over 30kg. These masks are so small I can promise you that there is NO adult no matter how petite they are that is going to fit this mask. Written in the instruction manual it even states "for adult use only". But guess what...they REALLY made this mask for children who otherwise would be S.O.L. when it came to requiring a Bipap machine and nasal/facial interface. Doing this eliminates the demand and necessity of developing a nasal/facial interface that ACTUALLY fits these children and the appropriately powered Bipap to go along with it.

There are rumors that these cmpanies are in the developmental stages of making these machines and interfaces but by the time they are out on the market Bella will be around 5yrs old. Either way, if the rumors are true, then it makes me happy because at least children will benefit from it in the future.

So, back to Bella lol. She is now on her Bipap and nasal interface. Brandon and the RT Educator sat down for three hours last night and mickey-moused a way to get the nasal interface to fit Bella without any leaks. It required some tegaderm and duaderm as well as a bit of interface manipulation but they were able to get it done. The interface will fit her just perfectly in a few months when her face is a little bigger but for the time being, its a size too big.
I tell ya', Brandon and I make a great team when it comes to doing things for our children. He has years of technical and fabrication experience meaning his hands can fix or make ANYTHING work. And not just that, he has such a high level of common sence thinking that he always thinks of the simplest things that we panic-ers are over looking. And me...well, Im the queen of research, options, and information. I can almost promise you that out of all the people and doctors in this hospital, I am the SMA expert. I have a 2" folder divided into sections such as potencial drug therapies, feeding and diet, and equipment and machines. I have scholarly articles on just about every topic related to SMA as well as clinical trial goals, requirements, and results. Together, Brandon and I cover all aspects of her care. Im the Brain. He's the body. And Bella is the heartbeat that keeps us going.

Bella will keep being sprinted from the Bipap machine (at two hour intervals) every few hours and continue being suctioned after the Inexsuffalator. She has such high spirits and is being such a trooper it makes us feel good about our decision to use the Non-Invasive approach.

Quickly, let me share a little story about her intellegence with you. The Inexsuffalator (or cough assist) is a machine that pushes air into the lungs and pulls it back out resulting in a cough. I helps get all the mucous and secreations out of her lungs which if left alone can cause infections or even pnemonia. This machine isn't bad for individuals who understand that they need to let the machine do the breathing for them while its in use. But its hard relaying that message to a baby. Babies will fight the machine out of anxiety and even grow to fear it. Bella already hates it. She just hears the machine turn on and immediately she pulls her hands over her mouth and gives you the saddest "please don't" eyes you have ever seen. And because her eye shape is so angelic as is...it breaks everyones heart :( Talk about associating sounds with emotions. At 6 months she already does.

As for the housing issue, we are still not sure what option we are going to take but I have hope. So many wonderful friends and family members are having fundraisers, asking for donations and even sharing our blog with others to raise awareness and ask for help that I feel so blessed to have. They are trying so hard to get us back in our home as we are and without them it would be impossible.

We ask that you keep us in your prayers and that you share our blog with anyone and everyone. All of us fighting for the same cause can make a difference in a lives of many.

God Bless,
Brenda