5/28/18 - Extubated

Well, today has been wonderful, but absolutely exhausting...


It started out like this...a family picture for my last day with my ventilator tube! BIG day for me! This was just before they did the deed and removed it; hopefully forever. I am officially freed of the darned thing! It was a fairly simple ordeal, but I HATED it SO much and made sure everyone knew how mad I was. Mom and Dad and everyone else heard me make sounds for the first time ever! Mad sounds, but sounds. I calmed down with some Morphine and butt patting. Anyhow, the care team came in and pulled it out, monitored me and then set me up with a CPAP mask/machine support for a while. CPAP stands for Continuous Positive Airway Pressure. They took the ventilation away (it basically forced me to breath at least a set number of times per minute) and put me on another form of assistance (the CPAP; the CPAP lets me breath on my own but still helps me get the air in easier). In Heart failure patieents like me, part of my normal care has been this positive airway pressure therapy. It helps me improve how well my body moves oxygen around, helps me to decrease how hard my heart has to work by "lessening-the-load", helps to alleviate hypoventilation and hypercapnia, improve my lung and respiratory muscle functions, and normalize my breathing. So, being that I have never been without a ventilator, the care team feels more comfortable having me spend a short time with a CPAP system. Hopefully, at some point, I will be doing well enough breathing on my own to get just a nasal cannula set up. It will be much nicer than the big mask. The pros of this all though; I don't have a tube in my throat anymore (that is great infection risk wise, as well as comfort-wise), I don't have tape on my face anymore and I am a lot safer now (I can pull this mask off by accident and it own't hurt me badly).

So...this is the new me guys!


Now, the next thing to tackle is getting back onto full feeds. They stopped my milk feeds when they extubated me today. They do this because they need to start me back onto feeds slowly. Digestion is a lot of work for my body (for my heart...we have talked about this in my other blog posts). Now that I am not getting as much help breathing and as they slowly wean the positive pressure breathing therapies away, my body with be working much harder than ever before. Digesting AND breathing on my own will be A LOT of work (that my body has never tried to do before)! We will start back with small feeds again soon and build up to the full amount I need, over some time. Giving my body a chance to adjust to the changes and so the care team can closely monitor me. 

I did well this afternoon and evening with the new CPAP deal...I am toughing this new change out. We all know how much I struggle changes. Please keep me in your prayers tonight! Please. Pray that I continue to do well. Pray that I can keep milk down when they start feeds again. Pray for my family and my someday donor's family, too. If you have time to write to me over the next few days, your thoughts and encouraging words would really help me get thru another tough transition.

Good Night. - Love, Heath

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