Thanks for praying for Abby and me on Monday. She handled the lumbar puncture (spinal tap) and chemo beautifully. She doesn't like them but cooperates and is not scared. Thank you for praying. They used to terrify her. I will never take this blessing for granted.
Abby's intracranial pressure is up again. It was 24 (normal is 8-14). That explains her headaches and grumpiness. She is normally a joy to be around but for the last couple of weeks, the pain has made it harder for her to handle noisy siblings and busy environment. I am scared to give her many of the extra doses of morphine because of her breathing problems.
They recently decreased the medication needed to treat her pressures because it was causing a dangerous side effect that could lead to coma or death. Yikes! Now they are playing with the doses for the medication to treat her pressure and the one to counteract the side effect. I hope they get it right soon.
This one makes me a little nutty. Your body tries to fix the side effect (low co2) by causing you to breathe very slowly. That is the last thing a child with asthma and obstructive apnea needs. And how can you get the rest you need if you aren't getting enough oxygen while you are sleeping?
Abby's oncologist did prescribe a rescue inhaler. It is a huge relief to have it for the times when Abby is in trouble. Thank you for praying specifically for that.
I have been trying to take care of Abby's needs for specialists in our hospital's network. It makes sharing of medical records/test results between offices so much easier. The only problem is that it was taking forever to get an appointment with a pulmonologist. Two of Abby's doctors want her seen by one as do I.
I finally took a "big girl pill" and called the pediatric pulmonologist who took care of my daughter, Katie. I love this doctor and trust him completely but I hoped I would never again have to bring another child to his office. Walking back into that world has opened the floodgates on my emotions and I have cried more tears than I thought possible. I guess the wounds from losing a child never fully heal.
Thankfully he will see Abby on Monday. Also, as part of her chemo cocktail she will get steroids for the next 5 days. They were prescribed to fight her cancer but will also help to calm her asthma down.
So for today, I am trying to focus on being with my kids and just trying to make it through the next few days. I miss Katie, but I have a family here who needs me now.
Your prayers and encouragement are the glue that are keeping my heart pieced together. Thank you for continuing to stand by our family.