Headaches Everywhere

Headache #1

Well, we thought that we would be going home today. We were approved by insurance yesterday night and our drug representative from ACTH told us he sent all of our information to the specialty pharmacy and they were going to call us in a few minutes to confirm shipment. We never received that call. I figured since this drug is so rare and with how serious Marek's disorder is that the pharmacy would be open 24 hours. HA! I called the pharmacy today and they are closed until Monday. I called the drug representative back and they said that the pharmacy will process it Monday and overnight it to us so we should have it Tuesday. At this point, if insurance would have approved us on day one they would have actually saved money since the hospital can't release us until we have Marek's drug in our hands.

Headache #2

After finding out that the drug should be here Tuesday at the earliest I wanted to inquire about how much of this drug the hospital has. The doctor explained to us that they only keep a very small "sample" amount on hand so that patients can start the drug as soon as their insurance companies approve them and typically the patients have the medicine the next day therefore the hospital doesn't keep an abundance of this drug in their pharmacy. Our nurse informed us that the hospital only had enough ACTH until Sunday morning. Ryan and I both had heart attacks. ACTH is a very powerful steroid. He is on the high dose track so they take him up injection by injection rather quickly. However, they wean him off VERY SLOWLY because the weaning process is more dangerous than the initial climb. This drug also cannot not just be stopped, there can be very serious complications if Marek were to miss a dose. Hence, why Ryan and I went into panic mode. After talking to the pharmacist, nurse practitioner and finally our neurologists we were told that they would have enough of the medication to last Marek until Wednesday. So we will be holding out breath yet again until our medication is finally in our hands.

The whole process is frustrating because we should be in the safety of our own home not here in the hospital where there are germs everywhere. The hospital told us they are trying their hardest to give us our own room but the floor is pretty much full and they can't turn down patients. Ryan and I have been sanitizing everything. We are to the point of being paranoid about every nurse or tech that comes in because we don't know who else they have taken care of, and to us, with our child with a compromised immune system, "hand washing" isn't enough. If we could put him in a bubble at this point we would.

Marek has been doing great with getting the injections. I gave my first injection without crying (yes I mean I didn't cry) this morning. We have discovered that if we feed him while we are giving him the injection it takes his mind off the pain. He is still having seizures and we haven't seen a 'noticeable' decrease in the length or the frequency of his seizures but the doctor assured us today that it may take some time. I was hoping for the miracle case of "first injection and seizure free" but I guess all good things take time.