These were the hot topics of the day. Anthony and I switched, so he is at Brent's Place with the kids, and I am back at the hospital. Esther is recovering and her body is showing signs of her new stem cells engrafting to make new bone marrow. Esther's ANC was 1900 this morning. White blood cells are the first cells to recovery, next are red blood cells and last are platelets.
An ANC that high is wonderful! Esther's body will still be very susceptible to infection for the next several months, but there is some ability fight. She did receive a blood infusion early this morning and platelets following the blood. Tomorrow we will start to wean her off her pain meds and encourage eating. Yesterday the attending physician this week told Anthony probably about another week. We'll see, her ANC has been above 500 for more than two days now, so that's a big criteria met! Next she needs to be infection free, fever free, eating a bit, and able to go three days between blood or platelet transfusions (so she can make it from Friday to Monday morning.
Esther is into puzzles right now. She loves completing them! We spent at least four hours putting together puzzles today. I'm impressed with her skills.
Another puzzle today has to do with staffing nurses. I'm sure it's incredibly complicated and needs change daily as patients come in with fevers or nurses need to leave for whatever reasons. This meant a nursing change for us. We really like our first nurse, but Esther was particularly excited to have her beloved Mr. Ricardo. He was our first oncology nurse during Esther's first week of chemo and is just a wonderful nurse. He has been an oncology nurse for a long time and made a huge difference that first week for both Esther and Anthony and me. He was able to ease our fears and help us understand Esther's care and what she may be feeling. When she found out he was going to take over for Miss Andrea, she said, "that's good because I love him." So, he helped her do her puzzles, obliged our crazy family FaceTime, and managed her meds timely and with precision. When he was leaving she told him and by and then told me, "it's okay, Mistow Wric-kaw-dough will be here tomorrow." We'll see if he is assigned to her care or not, either way, it made Esther's day.
I want to thank everyone for creating such an awareness about platelet donation, for donating platelets, and I also want to ease some fears. One thought...if you can't come to Denver, donate in your area! All hospitals have a need for platelets. We of course are encouraging anyone who can to come to Children's right now because we daily see the vast need, but if you can't donate here, go where you can. Check their website for details and go to a hospital before another company.
While Children's Hospital was out of platelets, they can still get them and will not withhold platelets from a patient who needs them. Different people have bleeding issues at different levels. The average number of platelets (blood clotting cells) is between 150,000 to 500,000. As you can see, that's quite a range! Most oncology kids will receive a platelet transfusion at 10,000 platelets. When Esther's nose bleeds became chronic, her doctors increased her transfusion number to 20,000 platelets. The thought behind this was to avoid some of those difficult nose bleeds and to help keep us from a trip to the emergency room just for a platelet infusion.
Now, after chemo that completely wipes out your bone marrow and causes a giant canker sore in your entire digestive system, there is an increased likelihood of the body having a hard time managing bleeding, so the parameter for patients who are having a bone marrow or stem cell transplant is 20,000 platelets. Since Esther was already at that point and prone to additional bleeding through nose bleeds, the doctors increased her parameters to 30,000. After she continued to get nose bleeds, they decided to increase her parameters to 40,000. That means she needs more frequent transfusions.
One really great thing about the doctors here is that they are proactive and not reactive. They are not just thinking about the medical aspect of a nose bleed but also the other factors that go into a bleed. That it's really scary for the kids, it can make them throw up blood they've swallowed, it's scary for the parents, when outpatient a trip to the ER is an infection risk as well as an unnecessary expense.
Enter platelet shortage. Esther is ordered to automatically receive platelets when her numbers drop below 40,000. If there is a supply, this is not a problem. When the supply is low, the hospital is wise to institute a system to make sure the supply is there for when a critical bleed occurs. It is smart of them to triage and determine the most significant needs.
So, instead of transfusion at 40,000 platelets, they will wait until either Esther's number drop below 20,000 or until she is showing signs of bleeding. This can either be in the form of a bloody nose or bloody mucous from her "mouth" sores (it's not just her mouth). When this occurs, the nurse will let the doctors know and they have to approve a transfusion about 20,000 platelets.
The hospital is able to get the blood and platelets they need. I think they use Bonfils. I would assume this is not ideal because it is processed differently and I'm sure there is a cost for the hospital to buy the blood products from a third party. I'm sure it's still safe, but it's a complication, an added step and a cost for something they should not have to pay for.
So, the bottom line is that Esther is receiving platelets when she is demonstrating signs of trouble clotting. A transfusion for her at 20,000 platelets brings more risk than an infusion at 40,000 platelets.
I posted information on the blood donor center at the top of the blog, so call and make an appointment, ask any questions and save lives.
All of this is very scary, but I am not aftraid. A four hours nose bleed is not fun and is a bit scary, but I know the care providers here are taking good care of Esther.
P.S. I apologize for typos...I was literally falling asleep typing and typing out a dream. It might've landed somewhere in this text. Good night!
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