Update, August 6

We finally convinced Doctors to put Claire on Fosphenytoin. They resisted doing that for such a long time due to a so-called allergic reaction she had a couple of months ago, though Rebecca and I never really believed that the reaction was specifically to the Fosphenytoin. But now that she has had a few days to get her level up, we have gone since 8:00 last night with only one seizure, by far her longest break in weeks. Unfortunately we have some hurdles to overcome before we get home.

Claire has been notoriously poor at receiving then keeping IVs. So, I guess that after 30 or so of these, we were statistically due for an infection. Yes, Claire has had a fever for 30 hours. Spiking as high 104, we had to continuously give her Tylenol and keep cool, wet, cloths on her to keep her cool. She also had a blood culture come back positive for infection. Claire is now on two Antibiotics.

What is most frustrating about this scenario is that the doctors refused to believe that the IV caused the infection, despite mounting evidence against their prominent theory. They believed that she had an infection in the lungs due to aspiration. We know Claire aspirates during seizures, but she has absolutely no track record of aspirating while eating prior to this incident. Moreover, the fluid in her lungs disappeared by the time the fever started and she's had no congestions that the doctors and nurses hear. The Doctors' lack of deductive reasoning and logic have confounded us and tested the limit of Rebecca and I's patience and civility with this hospital. It is frustrating to just get Claire’s seizures under control, then be delayed by some carelessness with her IV.

This evening the fever finally broke and the night time pediatrician recognized the infection in the IV spot and drained it of puss. Now that is being treated properly, we can move on to the next step of getting home. We need to transition the use of Fosphenytoin to Phenytoin, the oral form of the medication. This is tricky in the least. In infants, who so quickly adapt to drugs, Phenytoin is very unstable, when the drug level can strangely jump from below therapeutic range all the way to a toxic range—precisely why we haven’t considered this option till now. I suggested to the neuro team that the inject Fosphenytoin rectally instead, similar to what we are doing with the Ativan. As of yet however, the Pharmacy have not found any cases where this drug was used this way. There is a first time for everything, but we want some hypotheticals before we consider this option. The good news is that the seizure came into control before Claire got into the therapeutic range of Fosphenytoin. I believe her current regimen will help regulate her seizures in the event her Phenytoin levels get too low.

With your continued prayers we will get to test the home care drugs over the next couple of days then get home early next week.