2 weeks post 1st surgery

It is 2 weeks post surgery for Ivee. Her head is looking good, and her stiches will come out soon. For those who don't know, her incision on the back of her head starts about 2 inches behind her right ear and travels at a curve down past her neck and shoulders. About 5 inches long. And there is an incision on the top of her head a little over and inch long from the external drainage port they had to put in until her ventricles began to drain the CSF (brain fluid) of her brain like normal brains do. They have done a CT scan of her this past Monday and her ventricles look good. If this continues there will be no need for a shunt (a tube that drains CSF fluid if the body can't naturally do it itself.) I know a lot of my teens out there are reading this, so I want to make sure you are clear. I'll put a lot of explanations in there for you (love you Natalie : )!!!
They have had some trouble with Ivee's central line. They needed labs two nights ago, and they tried and tried to get blood return and couldn't, which is one of the reasons to have a central line... no more sticking. So at 3 am Ms. Ambe (the lab tech) came in and stuck her for blood. (The doctors needed to do blood work to see if the blood transfusion was doing it's job). They got out the door, and 30 minutes later came back in cause the blood they had drawn already clotted in the tube. So this time they stuck her heal instead of her hand. Then after they got as much as they could, which wasn't enough, they tried to get blood return on her central line just "one more time" and of course got blood. After all that.
Ivee is almost at the end of her 24 hour PH test to check the acidity of her digestive system before they can put a GI tube in (feeding tube). More than likely Dr. Powell, the surgeon will perform the GI surgery, will want to do a GI test before the surgery. A GI test looks and sees what the whole digestive system is doing from start to finish.
Today she is having a bone scan and hearing test. She is on morphine for pain and benadryl for itching, and she is on 5 other medications...Antibiotics, steroids, a medicine to relax the stomach, and a medicine to dry up secretions. And since she can't eat, she has TPNs and Lipids going into her central line for nutrition. (those are nutrients and fats)
She had a really ruff night last night, and today her central line is oozing. So the surgeon had to come in and fix it. She and mommy didn't get much sleep.
I have my ups and downs. Most of my downs come at night when I am alone and lacking any descent sleep. The Lord has his moments of reminding me he is still in control, but in my human mind many thoughts come and go. I try to cling to Psalms 40, especially verses 1-3. "I waited patiently for the Lord, he turned to me and hear my cry. He lifted me out of the slimy pit, out of the mud and mire, he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put trust in the Lord."
We are in room 510 at USA. Our room phone number is 415-1510. Sometimes we answer and sometimes we are in the middle of something. We like visitors, but you may need to call first to make sure we are there. She has many test that happen, so sometimes we are not in the room.
Thank you once again for your prayers and thoughts, and for the many gifts and visits. We know we are loved!!!!!!