Sadie takes a lot of oral meds. She takes the following at 8AM and again at 8PM: Decadron (steriods), Zantac (heartburn), Amlodipine (blood pressure), Colace (stool softener), Miralax (laxative), Septra (preventative antibiotic on F/St/Su only)
She's given Ceptaz (antibiotic) every 8 hours thru her picc-line. They will give her this until she's no longer Neutropenic and can go home. Neutropenia is when you have an abnormally low white blood cell count which serves as the primary defense against infection. Sadie is neutropenic which means her ability to fight an infection is very diminished, hence the antibiotics and the long hospital stay.
She is given Vincristine (Chemo) every Thursday thru her picc-line. (Other forms are given on certain numbered days, but not weekly)
Her vitals are taken every four hours. Blood pressure, temperature, oxygen saturation, heart rate.
Blood is drawn from her picc-line every day or every other day at 4AM depending on the doctor's orders. Dave and I are given a copy of her labs every morning and watch the numbers along with everyone else.
Doctors are monitoring her bowl movements (the Chemo causes constipation), her fluid intake and outflow, her blood pressure, and of course her lab work.
When her hemoglobin drops below 8 she is given a unit of blood. When her platelets drop below 10, she is given platelets. We want her white blood cells to drop and then we want the healty ones to multiply enough for us to go home.
She has a team of experts watching over her: The attending Oncologist, a fellow, a resident, a med student, all the WONDERFUL nurses. She has a nutritionist, a physical therapist, a Child Life specialist who is wonderful at making sure she's happy and still feels like a kid. We have a social worker, two "teachers" who are putting me through a course of what to do at home. And then there are the volunteers, Joe who visits once or twice a week, the library staff who bring her dvds, and other parents also staying in the hospital. All who help lift our spirits and reassure us we are in good hands.
Other than that it's a matter of keeping her germ free and entertained, which is not an easy task. Our favorite game is to head up to the third floor for hide-and-seek with Daddy. We go for lots of walks and she he has been given so many gifts and toys to play with...she is wonderfully spoiled!
1 year ago
6 comments:
Also, Much Thanks (as implied in the message) to our friends and family. It never ceases to amaze me how blessed we are to be surrounded by people that give so generously, and for the countless prayers that have been offered on our behalf… They are not unnoticed.
Oh my goodness. I think of the times when I have to give my kids an antibiotic and how hard that can be-- I can't EVEN begin to IMAGINE what it must be like to do all that.
I am so glad that your friends brought you some home cooked dinner on Thanksgiving-- I think about you guys all the time but especially on Thanksgiving- I wondered what and how you were doing.
I can totally see why the doctor mentioned that you are the most calm mother-- how blessed is Sadie to have that sweet calmness and strength supporting her during such a scary time. No doubt that you need to cry--again-- I can't imagine.
I love the picture below of Sadie walking down the hall-- such a sweet picture-- it sure reminds you what a tiny little patient she is.I just want to hug her. Please give her one from me--Love you guys so much--
I hope you don't mind that I found your blog. We are thinking of your family so often. I just can't imagine my baby girl in Sadie's situation. The picture of her and Dave is just so sweet. She's such a precious girl with a great family.
I know this sounds cliche, but if there is anything we can do to help we'd be more than happy to. Hudson and Beckham would love to have your boys over- wear them out on the trampoline- I'd be happy to run errands for you guys!
Anyway, you are amazing and inspiring. Keep the faith. Xoxo.
that picture does say a thousand words-i love seeing sadie walk around in her little hospital gown. and holy toledo, you have sadie's days down to the t! that is so much and i am so impressed that you have it all in your brain!:) so glad you are posting so we can keep up.
Ohhh, the rigamarole of the hospital routine. I am sure you are not resting as much as you need to with all the night time vitals and blood draws. I hope the ANC goes up and she gets to recuperate at home as soon as it is safe!
I am so glad Michael Jeng is around- he is amazingly great! All the ONC attendings are great, but he is so personally involved!
We think about you guys all the time, every day. I cannot believe all you, Dave and Sadie have to go through. We'll keep you in our prayers!
Post a Comment