? 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. :)

Not completely stable

Well, here it is, 3:21 a.m. Kira woke me up, by making strange sounds. I went to check on her, and she had a bloody  nose in her left nostril, which is where she usually gets them, when on 02 too long, or with aggressive suctioning. When I took the 02 prongs out of her nose to wipe her, her oxygen saturation dropped to 74, and she went dusky (loss of color). I am not sure what is going on with her. Why is she on 02 you ask? Here is what has been going on for the past few days....

When Sissy needs to nunu ( go #2 for you appropriate folk), she gets worked up. She can sound congested and crunchy for a few days while her intestines are doing their business in there. Once she fills her diaper, her lung/throat congestion sounds, clear up. So I figure for the past few days, that is what has been happening here. Although, I never really need to put her on 02 during her nunu irritability (just coined that right now), she has been dipping a wee bit. Not much at all, when she dips, she only has been dipping to 88, then coming back to the mid 90's. I have been putting the 02 on her for security overnight. When I went to sleep last night, around 11 p.m., she was hanging at 96. I only had her on 1 liter, which brought her back to 99-100. So here we are now, and there is clearly more going on than what I thought. I deep suctioned to induce a cough, but it was nonproductive. She sounds pretty good. Which scares me, because sometimes, when she sounds good on the outside, but her sats are low, it means it is consolidated, just IN there, know what I mean. So I suspect we will be at Kaiser today. I will keep you posted.

Falling into place

Things are seriously turning around for the better super quickly all of a sudden. It's finally all coming together. I should be able to pick up Kira's handicap parking placard soon, and I just got home from the van conversion shop that is going to hook a wheelchair lift to the back of my truck! This is all so exciting! This platform raises to my level for me to hook the ties on, lowers and drops flat to wheel the chair off/on, and fully swings out of the way for total back of the vehicle access.

Handicap Placard... check
Wheelchair lift.....check
Respite nurse.....check
Employment for Daddy...check
Hospital bed... half check

Thank you Jesus.

Updates

Hi guys. A few updates here, on respite, the bed and her Rapunzel hair.

I just received a call, letting me know they found a respite Nurse for Sis. The charge Nurse will come to my home next Wednesday to do the paperwork, talk more about what this all entails, and do a home inspection. K, that last part scares me.. do you even know how much house cleaning I have to do, for someone to do a walk through of this place?! Egads! Then, Kira's Nurse will start approximately 2 weeks after that. I would love some Prayers that it's a good match. I understand that the match is more for her to tend to Kira's high needs, but obviously, I Pray for a good personality match for her and myself. Her hours will be 8 a.m. to 4 p.m. M-F. I have no clue how I am suppose to entertain her for all of those hours each day. Kira will not need all of those hours to be hands on...so there will be tons of chit chat between her and I. I am sure all of this will be a beautiful situation, as I absolutely adore almost every one of Kira's hospital folks. I will keep you posted...

I spoke to Kira's Dr. about the bed situation, and she was putting in another prescription for a new bed. I have yet to hear anything back though. I need to follow up, because by now, a new bed should have been delivered, I should have received an email, or received a denial letter by mail. Good thing Kira sleeps with me often anyway.

After years of debating on cutting her hair, I DID IT. I would go back and forth so much, and always falling back to the fact that it's gorgeous and I just can't and won't cut it. Now that I did, I have no doubt what so ever, that I made the right choice, for KIRA. I kept it long for ME. She did not like her hair long. She has a sensitive scalp like her Momma, and she would posture and spit when I combed the rats nests out. It was always getting pulled, laid on, or caught on something when down. So I ended up mostly keeping it in an updo. Everyone told me how beautiful it was, that I shouldn't cut it, and even Jim has said many times that she is like Samson, and her hair is her strength. I put way too much symbolic value on her hair. She is my only girl. I have all of these boyish boys, and I just want to be able to do the "girly" thing to the fullest. It was such a ridiculously emotional thing for me to do. I am almost embarrassed that all of this hair business with Sissy is such a big deal to me. Anyway.. it's done, she looks absolutely adorable, and I know that she feels a million times better. THAT is what matters. It's quality of life, not length of hair for this girl now! ;)

Umm, what else to update with? Have I been on here since her Birthday? I don't think I have. It was pretty uneventful for her unfortunately. We went to my Father in Laws, and had a nice time with a few family members. For a large part of the day, it was too hot for her to be out, so she stayed inside, on the couch while we all swam and bbq'd. Poor Girl. She sat in Daddy's lap for her fireworks. YES, they are HER's now! lol Next year, Kira is going to have a large birthday bash at our house, on a different day other than the 4th.  You are all invited!

On a wonderful note, Jim finally got a job. Hard times are about to be lifted. Whew. I have learned many valuable lessons through out all of this though. I have learned how to stretch a dollar, found humility, and changed my judgmental outlook on people who are seen as low class. I will go from here, to hopefully being a frugal, financially responsible, and more compassionate for people, woman.

Before.. between her bottom and her knees.

After. A short, layered, A-line bob.

19 inch braid. (Still smells like coconut) ;)