So, I moved Autumn's breath rate to zero on Tuesday so all she was getting is pressure support. She did great ALL day and did not even need oxygen that night. This morning she started out good but after her morning nap I just could not get her breath rate off of 20. She was constipated and now we know how it affects her shunt so as soon as she had a bowel movement after lunch we were able to put her breath rate back to zero. This evening when she was falling asleep she needed some oxygen but James had just fed her so I figured she may of been having some acid reflux and inclined her some more and sure enough her stats went up. I think we are finally figuring out Autumn a little more---her constipation affects her shunt and her reflux affects her breathing. Not sure if the drs. agree but that's the facts. ;) We got a PMV which is a speaking valve to hopefully hear Autumn make noises but there is an adaptor we need to it will fit on her tubing and we are waiting for that to come in. Not sure if she will be able to handle the valve or if it will even work but we are praying it will. Man, I would give anything just to hear her belly laugh.
Well, our new nursing company will be coming out tomorrow to assess Autumn. Once we sign the papers with them our nurse will be able to start right away so it should not change up our nursing schedule too much. I have one nurse that I am not sure if he is going to sign up with the new agency as well so the hours he was going to cover for June we may not get covered but it was only like 5 shifts but we really like him and would miss him if he does not stick with us. My day nurse that is moving here will be here towards the end of June so I am excited to have the day help in the summer to spend more time with the kids and to be able to get my house spring cleaned and organized. We may be training a new nurse from the new company just to have another back up but if she does not already have trach care I am not interested in training her. Our 2 main nurses we have are completely dependable and Autumn's care will be their first priority on their hours so we should have no problems. The only issue right now is the new company is not in our region to take our MDCP hours. We get nursing hours through 3 sources. First is insurance and we get 12 hours per day. Next is our CCP (Medicaid) hours and we get 100 hours per week, and then we have our MDCP hours (respite care) and we get 22 hours per week with that. We never use ALL those hours but if we don't use at least 1 hour of our MDCP hours a month then they will drop us. We have to keep the MDCP because that is the only way we were approved for CCP and Medicaid since James made too much and the MDCP automatically claims Autumn disabled and so we get approved for Medicaid. Confusing and crazy system huh? Anyways, so the new company is going to see about getting into our MDCP region but if they can't then our nurses will have to sign up with ANOTHER agency just to use the MDCP hours. Well, both of our nurses already work for 2 agencies so asking them to sign up for a 3rd is kind of crazy and a headache so I'm praying they will be able to get into our region. Other than that, the transition should go smoothly and there should not be any problems.
Okay, our "no tech day" was kind of a bust. Madison left Monday morning for church camp for the week and then my mom took Gage to her house around noon to stay the night. So, when James woke up and realized the kids were not here we decided not to "torture" ourselves and became all teched out again. ;) The kids though went all day with no tech stuff so I am proud of them for that. That morning mom was watching Gage and Autumn while I took Madison to the church and then got groceries....she turned on cartoons for Gage and he yelled at her saying he was not allowed to watch them. I was surprised he was honest with her and he handled not having his morning Noggin or Wii.
After tomorrow's meeting with the new company I will get everyone informed on the details of what went wrong with the other company and why we changed.
2 comments:
If I'm not mistaken, having a breath rate of zera means she should be on CPAP (or BiPAP if you have pressure support dialed in). If you don't mind me asking, what are her settings?
Gosh Autumn's making so much progress!! That's terrific!! You can tell she's loving being home.
Btw, in doing the math you get 29 hours of nursing care a day. Holy wow. I bet it's good to know you have the backup if you need it.
I really hope things go smoothly with the new company and they're able to get in your region. You may be able to bring in a new nurse from a different company one day a month to keep your MDCP coverage.
With the nurse without trach experience, you never know! You might like her! We have one that came in without ANY pediatric trach experience and her adult trach experience was antiquated. At first I was going to tell the agency not to send her back, but she has turned out to be one of our best nurses. She's into asking questions, playing with Mackenzie, and making sure everything's just right. Very anal and I love it. Honestly, she's one of the most involved nurses we have. She even woke me up at midnight for a suspected plug. Some of my nurses wouldn't have done that, so I was very grateful. We have a rule that our nurses don't do trach care (not even changing the drain sponge), and they don't touch the vent (except to silence it). There are only 2 nurses that I allow take Mac off the vent in the morning, and even then they have strict instructions. (Although one never seems to want to follow them.) Anyway! What Miss Longwinded is trying to say, you may end up liking the nurse because she DOESN'T have any trach experience.
And good job Gage for going no tech! What a great kid. :o)
Does she get any PEEP from her circuit or is that programed in with her vent settings? With the 950 it has to be progreammed in the circuit. Pain in the butt.
But yep, it sounds like she's on BiPAP! CPAP would be just a PEEP, and BiPAP is a PEEP with pressure support. Look at little Miss Autumn go! I'd imagine the next step is dialing down her pressure support. YAYS! I'm so excited for you!!!!
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