Ava is doing much better today. She still has some extra secretions so Lung Center has advised us not to sprint her until she is completely back to normal. Some kids regress a bit after getting RSV.
This afternoon we got our oxygen delivery (from our new oxygen company) but because they don't have a lift they couldn't take a new tank upstairs. They left us two tanks by the bottom of our stairway. The one going up the stairway wasn't hooked up yet when Ava had an issue. Of course an issue has to arise at this time. Ava woke up from her nap coughing so our nurse suctioned her. She put Ava on her changing table and noticed that she was breathing hard and having a hard time. She started to get her ready to suction when she called for Anthony because our portable tank wasn't full of O2. She changed her trach as well and didn't find anything in it. Ava's oxygen saturations were at 41 and dropping. Anthony rushed to get the O2 line hooked up and fill one of our tanks. Ava eventually started to come up very slowly. Thankfully he was home that day since I wasn't, because I'm not so sure Ava would be here without him getting her the O2. We really have no idea what happened but we have been told RSV really can do a number on kids.
Because of the RSV, it's going to take her a while to get back to the 3 hours off and more. I'm really disappointed especially since she can't get around that easily with the vent. She doesn't like to be attached to it. We might not go to Lung Center since we will just be starting her off the vent for 15 minutes again. I will call on Monday to find out if we will go to her appointment on Tuesday.
We do have other good news: Ava has been keeping on her food down since she was ill. She is also eating about a packet and a half of her organic baby food. We are going through it really fast.
Our night nurse was sick on Tuesday when she was here and if I would have known, we would have sent her home. We haven't had a nurse most of this week: No nurse Saturday - day, Sunday - day, Monday - night, Wednesday night - our day nurse came in at 1 am, Thursday and Friday night. It's been a crazy week. We are in the process with the help of one of Ava's ICU friends to get Medicaid nursing. I have a nurse interested in working during the week at night. Hopefully that will work out. Our weekend day nurse is taking off on Sunday's, so we have another shift open there. Please pray that we can get rest and have more nurses we can trust with Ava.
Thanking God for Ava staying home while she was sick and praying for more nursing and for peace in our home...
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