Be Very Careful...

This little tiny vial is a ten day supply of Acthar Gel (ACTH).  Our nurse handed this to Dan and said  "Be very careful with this, it cost $30,000."  WHAT!?!?!?!  We knew this was expensive, but actually holding this little vial between your thumb and index finger and hearing that is worth more than our cars was still a ridiculous thought.  There are two more vials arriving at our house tomorrow, which will complete a thirty day supply.  For those of you doing the math, that is $90,000 per month, and Will is going to be on this medicine for anywhere between two to five months.  Thank God - Thank God -  for good health insurance, because as we mentioned in a previous post our copay will be $40 per month, although we were warned that if we drop the vial (did we mention it is glass??) we have to pay for it ourselves.  Yikes!  Now, before anyone decides to break into our house to steal the ACTH, don't bother, there is no black market for a nasty injectable steroid that is pretty much only used to treat infantile spasms.

We checked into the Clinic again on Monday morning, 3/21.  Gabby (we love you!) rearranged her schedule so that she could be the one to wire Will up for the Video EEG.  Next, Will had to have an EKG to test if his heart would tolerate the ACTH.  He cried too much during the first one so they ended up having to repeat it a second time.  We practiced giving shots on a teddy bear, and then we got to practice giving each other a shot of saline solution in the arm so we could both know what it feels like to be on the giving end and on the receiving end.  Not so bad.  Actually, spend a few days in a tiny hospital room with your spouse and an active 20 month old who is wired to the wall...jabbing your spouse in the arm doesn't seem like a bad idea!  Just kidding...

By evening we were all going stir crazy, so we asked begged the Resident to give us a special pass to disconnect the main wire on the V-EEG so we could leave the room for a few minutes.  He agreed, so we took Will up to the Rooftop Pavilion and took in a pretty awesome view of downtown Cleveland.  Will was so happy to be able to run around up there and it was great that he got to burn off some energy.  We came back to the room and settled down for the night.

Tuesday morning, Will was literally awoken to a needle going into his arm to get a blood sample.  Not a good start to the day.  After being delayed from the last visit because he was sick, we finally went forward with the plan to begin the ACTH treatment.  After saying a few prayers, Dan gave the first shot, and everyone - parents and child - did pretty well.  Some of the side effects that have been worrying us include:  hypertension, suppressed immune system, severe weight gain, irritability, and what a lot of other parents who have been through this describe as "roid rage."  We didn't expect to see changes very quickly, but within a few hours, he started acting pretty hyper, walking around (as much as his ten foot cord would allow) and babbling more than usual.  On the bright side, he was very smiley and really gave us some good belly laughs when being tickled.  We got a visit from a medical student who plays music for the kids in the hospital, and Will enjoyed having someone in his room that didn't want to poke him or put a blood pressure cuff on him.  We also got a visit from Chaplain Laura and her seeing eye dog, which was a nice comfort to all of us, and again had the effect of putting Will right to sleep.

Kelly gave the shot on Wednesday 3/23, and all went well.  We were told we could go home a day early, so we started packing up, and they removed Will's EEG leads.  Of course, Dan was out taking the first load of things to the car when our nurse practitioner came into our room to let us know that they had found an "abnormality" on the EKG, and Will would need to have an Echocardiogram, which is an ultrasound of his heart, to find out more.  He was to be sedated, but miraculously, he fell asleep right before it was to be done, and somehow stayed asleep the entire time so there was no need for sedation.  Luckily, about an hour and a lot of prayers later the results came back that his heart is completely normal, which was a huge relief.  We're not sure we could handle having to worry about two major organs, worrying about his little brain is enough.

We finally got discharged and made it home around 7:00 tonight (Weds. 3/23), and Will was really happy to be back home to see Jack and Duke.  Jack learned some new jokes while we were gone from his grandparents, and couldn't want to tell them to us.   Tomorrow we have a home health aide who will come to our house to check Will's blood pressure, and she will be coming every 2 days for the duration of this treatment.  So far, we aren't seeing any results from the ACTH, just side effects.  In fact, if anything, he seems to be having more seizures and they seem to be getting more intense, but we were told that although sometimes results are seen fairly quickly, it could take up to 2 weeks to know if it is going to work.