Monday, August 22, 2011

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.

Thursday, August 18, 2011

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.

Wednesday, August 17, 2011


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 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) ;)