Friday, Post Appointment Update

Now that Simon's central line has had a few days to begin the healing process, we were back to the doctor's office. Simon's blood counts are about where they were last Thursday, when we first learned of Aplastic Anemia. His platelets are about half what they were following his transfusion, but still about double what they were when this all started.

The doctor was pleased with the way Simon is healing following the surgery. He expects that to continue to heal. They were able to use his port to do his blood draw and then to administer medicine.

Simon received IV antibiotics, which took a little over an hour. Simon watched a movie and practiced his handwriting while the medicine dripped into his body.

Dr. Cook explained what will happen next. The insurance has approved the treatment, so Simon will be able to be an outpatient. Simon will be given immune supression therapy beginning on Tuesday morning. He will receive 5 vials of serum for 4 days. The process will take about 7 hours each day. The treatments will begin on Tuesday. They can't start on Monday, because they need to get the medicine first. The clinic will be receiving a new shipment on Wednesday and they will be able to borrow enough to get him started on Tuesday.

After next week, Simon will only have to go into the clinic a couple of times a week for blood count checks! Hurray!

In addition, they will do a complete work up of Simon's blood on Tuesday. It will include testing for possible causes of the aplastic anemia, as well as blood panels that will be needed if he needs the bone marrow transplant down the road.

In addition to the antibiotic he received today, he will begin an oral antibiotic tomorrow. When he starts the treatments, steroids will also be taken orally. The steroids are to try to prevent something called serum sickness, which is a condition in which the joints become inflamed and hot and sore. It can be severe enough that the kids need perscription pain medicine to cope. Serum sickness usually just disappears about 10 days following the beginning of treatment.

After the doctor's office, we picked up Oliver and headed to Walmart to pick up Warren and to get Simon's perscription filled. Then we ran into a brick wall, so to speak, or at least that is what if felt like at the time. Because Simon will need to take 8 pills, twice a day, for 28 days, the pharmacy didn't have enough pills. They didn't even have enough pills to get him through the week-end. The pharmacist called the other 2 pharmacies in the area. One was out completely and the other was also so low on supply that they wouldn't be able to get Simon through until Monday.

Then the pharmacist began calling all over town to find someone one who had enough for the week-end. 7 calls later, she finally found enough for the week-end, but it was clear across town, about 40 miles away. She was going to transfer the perscription and we would pick it up first thing tomorrow morning.

As I am typing this, the phone rings, and it is the pharmacist and they need a diagnosis. Apparently, there are 2 versions of this medicine and she isn't sure which one the doctor wants. She then called the on call doctor and it is determined that Simon could start the medicine on Sunday, so we won't have to make the long drive after all. We can pick up what she has tomorrow and start Simon on Monday. Then the phone rings a third time. Apparently, the pharmacist is concerned about such a high dosage for such a small child. She wants to verify the strenghth before she fills the perscription. She will try to take care of that first thing in the morning. If she cannot, we will have to wait for Monday to start the medicine.

I have a lot of observations that I want to get out of my head, but it has been a very long day, and the house is noisy, so they will have to wait for another day.

Thanks so much for continued prayers and support. I couldn't cope without it!