Oops

I forgot to post this in August. 

" Ivee's scans came back clear and stable. The doctor even said her scans are getting easier to read, less hazy. I am assuming he meant all the damage from radiation treatment (maybe inflammation) seems to be subsiding."

It is SEPTEMBER. it's childhood cancer awareness month. You may think (but probably haven't), "You know. Hope sure hasn't posted a lot about Childhood Cancer during this month of awareness. Maybe it's not as important as she made it out to be." It's true, I haven't. Why you may ask? (But probably haven't) 

Well, the answer. I'm too busy dealing with the after effects of surgery & treatment from Ivee's cancer, plus being a wife and mom to other people who need me. I know, every bodies busy. But here's my life. It consist of taking care of medical needs, much like a child who has to take care of a elderly parent. My morning begins with an hour of unhooking machines, such as pulse ox, feeding tube, Bipap machine, and oxygen concentrator, giving breathing treatments, rubbing helpful oils on her or diffusing them in the air, and using a cough assist machine to help her "gag" out secretions that built up in her esophagus and airway over night, and using a suction machine to suck those secretions out of her throat and nose. I finally grab a bit to eat, then I spend hours trying to catch Ivee up on school, which involves doing lesson plans and sitting by her side the entire time cause she is easily distracted and must be kept on task. Then I fit in errands, doctor calls, and whatever else may come up. Then my thoughts around three sometimes go, "Oh my gosh, I forgot about supper! Let go see what I can throw together." Then some days, like today, it goes, "Oh wait, Ivee's very congested, let's give her another two breathing treatments, her oxygen is low. Should I take her in for a chest X-ray or wait? No fever, but then again, she doesn't always have fever. No, I think it's all nasal this time."

Once supper is over I clean up and then by seven it's time to begin what I did this morning all over again, but in reverse. Hooking machines back up, giving breathing treatments and shots, cause she can't grow on her own. 

Once she goes to sleep between 9-10pm, I then begin the process of staying up for an hour or two til she's good and out of it to see what I have to do to adjust her oxygen at night, cause the doctor doesn't want it to high, and we know pure oxygen isn't what's best for the lungs. Some nights this means sleeping in her bed, and she is a bed hog, all night or until I can't stand the heat from all the machines in her room, and her knees in my back, and I go to my bed around 3 am to try it get back to sleep. 

Yep, sorry I didn't have time to "remind" anyone that pediatric cancer sucks and we need more funding so no other mom has do this to their child in the future.

St. Jude week

So...I've wanted to sit down and write, but who has time for that?
Updates and upcoming events are as follows.

 Ivee has struggled with congestion. It isn't really mucus, it's just thick, thick saliva. I think she has some allergies, and we used a prescription allergy spray on her. However, I don't think it helps. After the next few events, I'm going to push her to be allergy tested. Obviously, I will have no food allergies, as she doesn't eat by mouth, but seasonal allergies HAVE to be in the picture. For those who do not know the full understanding of her issues, the gist is:
Paralyzed vocal chord=aspiration of saliva
Aspiration of saliva=oxygen absorption problems in lungs, and enzymes getting into the lungs from the saliva that doesn't belong there
She has had to have breathing treatments throughout the day to thin secretions, and then has to heave to get all the secretions up as mom suctions them out with a machine. This all in an effort to keep her oxygen levels in the 90s (if you don't know, we all breath at a 97%+ oxygen intake as normal people, even on our bad days). Ivee breaths at 90-93 on a daily average, and when congested she stays around 88-89. These stats would put most of us in the hospital. She had pneumonia, for the first time ever, in June and the child is still struggling to get back to her normal. She has had a few xrays since in TX, and there has been something on the film to concern her pulmonologist. He believes it might be scarring from a previous illness, but is not certain without the following...Friday she had a CT with contrast dye Friday. We will receive results next week. 
We are in Memphis for MRI cancer scans and other check ups. She is a VERY hard stick, and by the grace of God, someone invented something called a J-Tip so she doesn't feel the shot. Every hospital needs these things! Emla creme and freeze spray are great, but J-Tips have them beat! She was stuck twice today, the first time she flipped, but the second time she was brave, as she keeps stating. We are, once again, praying for clear and stable scans. She is currently in MRI and we see Dr. merchant this afetrnoon. 
Ivee has a tonsillectomy/adenoid scheduled in Sept. She sleeps with a Bipap and oxygen at night, and does have some obstructive sleep apena. (This is quite evident when I am sleeping with  her  at night and she rolls on her back) I know she would benefit from the surgery, but oxygen is a problem, sedation is a problem, and that tiny little mouth is a worry.
PRAYERS- It's what we need, what we always need. Taking care of my little girl is a full time job, and not one that I can call into if I'm sick, tired or need a break. She is our families blessing, but it can be a huge struggle, especially in seasons like this one where I can't seem to do much to help.
I adore all of you that check in, pray and love on us. YOU are a blessing!!!