? x1

That means, this is my first follow up regarding the post titled, "?". It's been 2 days since I wrote that, and things really aren't much clearer over here, except for this..she *is* sick. She got a little worse, pretty much needing 02 consistently now, but she can get by on 1 liter for awhile, but never needing more than 2. She was off the 02 for a short time today, however... long enough to take a bath and kind of watch her to see what she does. If she is able to be on room air, it's momentarily, and she only sats at 93-94... then she will drop back to the mid-high 80's. Jessica, ( her nurse ) has been beautifully aggressive with her. She did the Theravest 3 times in an 8 hour period. The vest goes on like a life jacket, inflates like a blood pressure cuff, and vibrates and shakes so the lungs get jostled and helps in clearing the gunk from the sacs. I have mentioned it before, but it really is such a great medical tool, really makes a difference! She is not ready to go to the hospital yet, and hopefully, will not need to. I THINK we may be able to escape a trip with this illness. Her chest sounds clear pretty good with a hearty cough and deep suctioning. She is a comfortable girl, not agitated at all, nor have her seizures increased due to this illness. So all in all.. things are pretty mild over here. :)

?

So I have no idea what is going on with Sissy. For the past 2 weeks, she has been dipping her 02 sats, and needing suctioning here and there. Her congestion sounds will clear when she coughs and I suction. It's very strange. Normally, when she is ill, it's cut and dry. She will get sick, drop her 02 sats, need supplemental 02 consistently until either the cold is over or she progresses to pneumonia. Before last night however, she could go 22 hours on room air in the high 90's, but need 02 for 2 hours because she's in the high 80's, then go back to maintaining a great number on room air. Ugh. Was that confusing? Sorry, if so. Anyhoo, pretty much yesterday, she was on more oxygen than room air. Last night, when she was on her left side, she was in the high 80's, but if I turn her to her right, she came back up to mid 90's. Something is a brewing, but I wish it would make itself more clear, whatever it is. Right now, it has me beyond confused. Right now, she is on her left side because she slept on her right, on 2 liters of 02, and her sats are 94-95.  I just realized to some people this may sound like I am speaking a foreign language. When I say her "sats" it's her oxygen saturation level. Your oxygen saturation level should be 100 if healthy. Even the healthiest of people don't always sat at a perfect 100 though, but really 98 or above. Kira, when healthy, always sats at 100. Her satting in the 80's clearly says there's a plug or something in there, that is not allowing free air flow, and allowing her body to oxygenate well. And I am sure most know this, but what the hay.... 02 means oxygen. I have an oxygen concentrator here, and it goes up to 4 liters. I use the nasal cannulas with it. She hardly ever needs me to use it though, like I said, unless she's sick, she's a pretty stable little girl! Okay, done rambling... I am not even going to proof read this, I know it's a mess of number's and jumble... I didn't sleep well, and have not had a full cup of joe yet... ;)

Respite Follow Up

So we are a week in with Kira's nurse Jessica. It is working out beautifully. Jessica is a very loving woman, exactly what I wished for, for Sister! She paints her nails, reads to her, sings to her, cuddles with her. Kira i'm sure, is in hog Heaven with this extra attention! Jessica has 4 kids herself, so she gets the chaos of a home with young ones. She doesn't mind at all that Aaron is at her heel often. He loves his new friend Jessica, lol. She is great with him too, adds him in to storytime and plays with him. I am feeling Blessed. Something that was brought up a couple of days ago, was my schooling. Now with her here full time, I would be able to go back to school. I filled out my online application for returning students last night. The next round of classes don't start until Jan. 14th, but I think I will be a student at that time! All great stuff ahead!

Tomorrow is the big day!

Kira's respite nurse starts tomorrow. All I know about her thus far is- her name is Jessica. She will be here at 8 a.m. I actually have an appointment for Sissy tomorrow at 11 a.m. for her monthly port flush. I will take Jessica with me. The house is pretty much ready for her, but there are still some odd and end things I need to do in Kira's room to be 100% ready. As it is, I have all of her tubing, ointments, hair clips, lip glosses, masks, etc. joined in the same tubs. So I need to separate and organize for the nurse to have easy access to each individual item. I am okay with a disorganized organized box, but that's just me. ;) I am honestly a bit nervous, and there's this small part of me that's still asking "Why am I doing this?" I already know the answer to that though. I am doing this for Kira, and ignoring any Mother pride that is trying to get in the way of it. I will definitely update tomorrow evening, about how the first day went. :)