Sorry everyone for not posting more often. It has been quite a hectic past couple of months. Namine has been home since March and doing great. We spent two days in the hospital for heart monitoring and they called it equipmentitis. She has been stating in the low 90’s to even 100% O2 stats at the cardiac visits.
We are slowly weening her off of the vent and she is up to about 12 hours on the trac collar during the day and the vent only at night. She is up to about 2 hours on the HME which is awesome. She hasn’t gained any weight and she has grown an inch and a half.
The biggest news that we have is that at our last trac vent clinic they gave her a Passy-Muir speaking valve. She loves it. She is only allowed to use it twice a day up to ten minutes each time. She gets mad when you take it off, but it is hard work to have on so she usually poops out after we take it off. If you do not know how the valve works it is a little device that goes over her trac like a trac guard, but when you breath out it blocks the hole so that the air is forced around the trac and into the wind pipes. It isn’t hard to breath in, but is difficult. As she builds up more of a tolerance to it she will be able to be on it longer.
The other news that we got it that she is behind in her physical activities. Which we already knew from being in the hospital so long, but the one that we were worried about the most she is right on track.
We have moved to a lower apartment, so our delivery men just love it. It is a bigger apartment and now we have Namine’s crib in our room. She loves sleeping in her bed more than the playpen.
Well everyone she is awake and getting kind of angry that I am not paying attention to her so I am going to let you all go. I hope you all had a fabulous Mother’s day and a great Memorial Day weekend.
God’s Blessings to you all. I can’t say it enough but thank-you for all of your thoughts prayers and concerns. Keep storming heaven not only for our bundle of joy but for everyone out there. Our troops near and far, our neighbors, pastors, teachers, delivery drivers, friends and enemies. God is watching and answering.
Jessica, Paul and Namine Eiche