on Autumn's vent settings. YEA!!! This morning was our neuro appt. and he said everything looks fine and we will go back in 3 months for an MRI.
Next was vent clinic. After a LONG wait we were finally seen. I first asked about getting a PMV which is a speaking valve to be able to hear Autumn. He said that would be fine and we can have our DME order one but if they can't find the right one then to remind them before our next vent clinic and they will have one for us. We talked about how well Autumn has been doing on the vent and not needing O2 anymore unless she desats and we turn it on just until she comes back up and then turn her off again. So, he asked if we were ready to play with her and I was jumping and screaming in YES!!!! So, we moved the breath rate down from 20 to 10 during the day, which means if she does not take at least 10 breaths per minute then the vent will take a breath for her. If she does well with that, after one week we will move her to a 6, and after 2 more weeks if she's okay we will move her to 0. Wow! I was shocked he was ready to push her this hard but so excited. So, we moved her to a 10 right away and she did great all evening. She fell asleep and lasted for a little while at 10 before desatted into the 80's so we turned her up to 20 for the night. So, when she takes naps and at night her rate will go back to 20. He said when she goes back next month and is doing good we will see what we can start doing to get her off the vent during the day. Wow, God is healing my baby girl....I can't imagine what it will be like to have her off of the vent during the day. I told James we could be moving to Dallas next summer if she gets off the vent during the day. ;) There was no way I thought we would be weaning day time stuff this soon but so thankful she's doing so well and we are able to start the process. I can see each day how her brain in maturing more and more and she's being healed. God is just so good. I mean, I can handle the vent at night--I'm just so sick of lugging everything around and not being able to get up and go with Autumn by myself. Well, it's been a busy 2 days for us.....lots to post about our visit with Grape Nanny (Autumn's great-grandmother) and the Bryan and Cole family (their child/grandchild has SB also). I'm too tired to post about it tonight but will try to get to it tomorrow--just wanted to share the exciting new about the vent before I go to bed.. Goodnight all!
2 comments:
We were given a different explanation of the rated breaths. We were told that is how many breaths the vent will give her for one minute. She would essentially be taking her own breaths, but would have 10 support breaths to help her oxygenate.
Either way, exciting news! Night time weaning does seem to be the hardest because they get accustomed to the support while sleeping, but you guys will get there. :o) Congrats!!!
Depending on her settings, you shouldn't really notice the vented breath unless you're looking at her wave forms. The vent should trigger when she starts to inhale (based on the sensitivity setting) and it'll just give her a "larger" breath that time. When Mac was on SIMV, I could hear the difference when they had it timed too long.
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