Good evening! I just watched the sun go down behind the mountains and realized the test results that were due back today from Mayo aren’t in yet. Bummer! I am not expecting a drastic change in treatment as a result of this particular test, but it is the last set of tests that might identify some piece of what Andy has. Tomorrow is another day and hopefully we will receive them in the morning 🤞🏼
In the meantime, I am happy to report that Andy has not had any seizures we know of today. 🙏🏼 He is still not awake or opening his eyes. We are still in ICU and he is still on a ventilator, fighting pneumonia, MRSA and MSSA and a new infection. He had a fever of 104 today, but seems to be resting more comfortably right now, so I am hoping he can sleep and let his body recover. 🤞🏼🙏🏼😴
This morning, a lady stopped me as I was on my way back into the room and identified herself as a representative of the Epilepsy Foundation of Colorado. I asked if she had the right person, she doubled-checked her list and verified Andy’s name. I am not sure why, but it really shook me up to hear that she had Andy on her list of patients with epilepsy. Maybe all of you are thinking “Duh!!” but this is the first time I have heard epilepsy as a diagnosis for Andy. Seizures have seemed to be a result or symptom of this mystery illness / condition he has, not an actual diagnosis. Talking with her about epilepsy and the need to talk to people at school and activities about epilepsy rocked my fragile world. I asked her to leave her material and a card so I could read on my own time and get back to her. Her information was helpful for me to see why Andy is on her list of patients with epilepsy, but I wish I had heard that first from a doctor or nurse, rather than a representative from a foundation.
I asked the nurse if she could request the neurologists come talk to me. They confirmed he had epilepsy, he will be taking anti-seizure meds for at least five years, and possibly his whole life. They also talked to me about resetting my expectations about how long he will be hospitalized and how different life will be when we eventually go home. After he no longer needs critical care 24/7, he will go to a medical floor until he is ready for full-time inpatient rehabilitation, for at least a month, depending on how much movement is restored and how much retraining on basic life functions he needs (eating/swallowing, speaking, walking, etc.). Today is the first day a doctor has really made it clear he will have lifelong diminished cognitive function. That is part of the reason this time right now is critical for his recovery - we cannot push too hard or fast to wake him up because his brain needs the time to recover and recuperate and the seizures need to be well-controlled (not just for a day) to avoid additional strokes and limit further damage to his brain and spinal cord. That was a lot to digest.
Today is the anniversary of my mom’s death and it weighed heavily on my heart. As much as I do really believe my mom and dad are both watching over and helping Andy (and me!) through all this, it’s just not the same as having them here with me to give me good advice, support, and encouragement, and keep me focused. And of course just one hug from either one of them right now would be a really awesome blessing.
I remember when Dad came to visit the hospital when I was in labor with Giovanni (he patiently waited outside once things got intense). I didn’t have painkillers and it was a tough birth, and at one point I yelled from the pain. Probably more than once 😉 He told me later how hard it was for him to stand there knowing that I was having pain that he couldn’t fix for me. I didn’t really understand that at the time because I was thinking more along the lines of how he couldn’t possibly know what childbirth pain felt like much less fix... but I think I understand better now. It’s hard to sit here and hold my little lovey’s hand and try to be positive when all I really want to do is take his pain away, make him better, take him home and shower him with love, and let him run around in the park with the neighbors. I know this is all out of my control, that he and his health are in God’s healing hands, but it is still hard to hear that’s he is not going to leave this hospital as the same Andy who begrudgingly agreed to come here a few weeks ago.
Hug your friends and loved ones tight for me. Please keep praying for Andy. He is a strong boy and I hope he proves the doctors all wrong and resets their expectations. Tomorrow will be a better day ☀️🙏🏼🤗