In the Gustafson household we have a love/hate relationship with all of Nicholas's medical equipment. We LOVE the fact that it keeps him healthy and at home, but we HATE that he has a disease which requires him to use so much medical equipment to live.
This is Nicholas's pulse/ox. It has a sensor which wraps around his big toe and measures his oxygen and heart rate. This machine alerts us when his oxygen level drops under 91 and when his heart rate drops below 90 or goes above 200.
This is a photo of Nicholas getting a cough assist treatment. The cough assist gives him a big breath of air which helps to open up his lungs and then sucks the air out, producing a strong cough since Nicholas's cough is very weak. The cough assist brings up phlegm in his lungs, throat and nose.
This is what his cough assist looks like. We use this machine 2-3 times per day.
This is a photo is Nicholas's Mic-Key gastrointestinal tube which is how he is fed during the day. There is a small balloon inside his stomach that is filled with water which holds the button in place. The tube that comes out of the button can unattach.
This is Nicholas's pump and feeding bag. He has a Kangaroo Joey pump and feeding bags. This thing is attached to him most of the day as his body prefers not to do bolus feeds. The nice thing is that it is easily portable and we have a handy traveling bag for it.
This is Nicholas's suction. We use it with his cough assist. As the phlegm is cleared from his body with the coughing, this machine helps suck it all out.
These are the catheters we use to suction out the phlegm. He has a nasal aspirator and two different size throat catheters: 12 french & 14 french.
This is Nicholas's pulse/ox. It has a sensor which wraps around his big toe and measures his oxygen and heart rate. This machine alerts us when his oxygen level drops under 91 and when his heart rate drops below 90 or goes above 200.
This is a photo of Nicholas getting a cough assist treatment. The cough assist gives him a big breath of air which helps to open up his lungs and then sucks the air out, producing a strong cough since Nicholas's cough is very weak. The cough assist brings up phlegm in his lungs, throat and nose.
This is what his cough assist looks like. We use this machine 2-3 times per day.
This is a photo is Nicholas's Mic-Key gastrointestinal tube which is how he is fed during the day. There is a small balloon inside his stomach that is filled with water which holds the button in place. The tube that comes out of the button can unattach.This is Nicholas's pump and feeding bag. He has a Kangaroo Joey pump and feeding bags. This thing is attached to him most of the day as his body prefers not to do bolus feeds. The nice thing is that it is easily portable and we have a handy traveling bag for it.
This is Nicholas's suction. We use it with his cough assist. As the phlegm is cleared from his body with the coughing, this machine helps suck it all out.These are the catheters we use to suction out the phlegm. He has a nasal aspirator and two different size throat catheters: 12 french & 14 french.
This is Nicholas's ventilator. He needs to use it whenever he sleeps, which means nap time and night time. We are hoping to get a different one after we visit his pulmonologist at the end of the month because his his current ventilator is so noisy and not very portable.
Here is Nicholas wearing his bi-pap (ventilator) mask before bedtime tonight. He just got a new mask because his old one was hurting his nose. Believe it or not, he really doesn't mind wearing it and is quite used to it by now. He sleeps really well with it on and rarely wakes up during the night. It's hard to tell, but he's actually smiling for his photo!
So, our sweet, nearly three-year-old boy has a lot of medical equipment he uses every single day, but if you asked him, he would probably tell you that he doesn't mind one bit, because it helps keep him healthy and feeling good.
Here is Nicholas wearing his bi-pap (ventilator) mask before bedtime tonight. He just got a new mask because his old one was hurting his nose. Believe it or not, he really doesn't mind wearing it and is quite used to it by now. He sleeps really well with it on and rarely wakes up during the night. It's hard to tell, but he's actually smiling for his photo!So, our sweet, nearly three-year-old boy has a lot of medical equipment he uses every single day, but if you asked him, he would probably tell you that he doesn't mind one bit, because it helps keep him healthy and feeling good. 
4 comments:
Thank you for sharing this information Jess. It really helps us understand both the blessings and the heartache you face each day. You are all truly gifts each to the other. Love that you share with your blog. I look for new postings all the time and keep you all in my prayers! love,Debbie
All very familiar! Do you have a nebulizer or Vest? Those are the two other machines we have in addition to the ones you posted about. Sure seems like a lot sometimes, doesn't it? But, you are right..it keeps our kids healthy and well!
Lora, he used a nebulizer and vest in the hospital but they wouldn't give us our own because the pulmonologist said that he only needs it when he's sick, which I guess means we have to take him to the hospital. We see his pulmo next week so I will bring it up again though ;)
They tried to tell us the same thing when Ryan was little. However, we got the nebulizer without any issue at all. I can't believe they are giving you any grief over the nebulizer as they really aren't all that expensive compared to other pieces of equipment! They tried to deny Ryan the vest though and we appealed it and won! Even though he only uses it when he has pneumonia (or bad cold); we have it and it makes me feel so safe knowing we have it here when he needs it! In the end it was Ryan's pediatrician who was so convinced Ryan really needed it. We haven't had the best of luck with pulmonologists when it comes to Ryan. They are sometimes too arrogant to really listen to the needs of SMA children. I hope you can figure it out soon! Good luck!!
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