Rudy had another (half body) seizure last week that occurred in the middle of the night. It lasted several minutes (at least 5min but maybe closer to 10min). Almost immediately after the seizure, he spiked a fever that fluctuated but got as high at 104 degrees. In retrospect, we probably should have taken Rudy in right away but in our 4am fog, Rolf and I decided to manage his care at home with the help of Rudy’s emergency seizure medication and Tylenol to control the fever. Rudy was lethargic, congested and feverish for the next four days but finally took a turn for the better on Father’s Day and is definitely on the mend now. He started summer school on Monday and had a good physical therapy session today although both activities left him winded and tired. I talked with Rudy’s neurologist the day after the episode and he is recommending a medication change once we get some blood test results. Although we’ve chosen to manage the last few seizure episodes ourselves at home, there is always something just a little different in each episode that makes it hard to know what to do…we hate to run to the ER every time something happens and yet would hate to not go when we should!! Maddening!!! We relied on the kids more than usual to watch Rudy while we tried to maintain our schedule for the week and Max finally told us that he gets nervous watching Rudy when he’s sick so we adjusted things a bit…sweet boy! I’m so glad he felt comfortable communicating honestly with us.
So, Rudy is on the mend and we’re holding down the fort here at home while Rolf and the big sibs head off to Boston for a family wedding. I’m sad to miss this special family gathering and celebration but after last week, I feel like our decision to keep Rudy at home is confirmed. We have a full week of summer school and therapy as well as some extra rest time too. ‘Hoping its a quiet, uneventful week! We haven’t engaged in any specific discussion about the heart transplant since my post on the 1st. Rudy has an appointment with Dr. Harake (SB Cardiologist) next week, so we’ll talk more then. I have a few follow-up questions for him and so I’ll share more after this appointment. We appreciate your continued prayer for wisdom and discernment! 🙂 Thank you friends!
‘Wishing you all safe and happy summer travels!!! 🙂