Today has felt busy. We’ve seen a lot of people and I will explain what I can here while I can still remember it.
Last night was difficult for me. Daniel slept, but he was a bit restless and he ground his teeth like he was going to break them right out of his mouth. This was pretty constant most of the night. Also last evening, because of his fever and illness symptoms, we were put under restriction, which means no one can enter our room without a mask and being gowned and we have to keep the door shut, which is hard for our social guy (the little one, not the big one). They also ordered a nasal swab to see if he has something communicable. Between watching his fever more closely and someone not coming to do the nasal swab until about midnight there were loads of interruptions and I got very little sleep. We’ve been through these multiple day EEGs several times now, and I know this happens every time, but I still always find it difficult when I am so tired and my functional ability gets very low.
Early this morning, around 5:30 or so, an EEG technician came in to improve the connectivity on some of Daniel’s leads on his head. After that he was quite awake, and while we did get him to doze for a little while, it was still an early morning. Cleveland Clinic does a good job of whole-person care, which means we have seen multiple disciplines. Yesterday the social worker was in, today Psychiatry was in, and that was a lengthy meeting. Late morning the epilepsy team did their rounds, and this was a shorter visit than yesterday. Daniel has still not had any seizures, so they had similar data from the night before. It continues to show near-constant epileptic spikes on both sides of his brain throughout the night. Apparently his medication levels had gotten a little high, so they may still be providing good seizure protection. Tonight they will reduce them even more and Daniel is to be sleep-deprived. We are to be sure he only gets six hours of sleep tonight. Part of me wants to laugh out loud at that suggestion, part of me wants to cry. Daniel is excited! “Woohoo! I get to stay up til midnight?!” This is going to be … interesting for sure.
The doctor managing Daniels’ care on the EMU the last two days is Dr. Moosa and you can see a video about him here. He is not quite as warm as Dr. Lacchwani, but he is an expert and has devoted his professional life to this condition, so I trust his guidance. He is not giving me the news I want to hear, but that isn’t his job.
Daniel’s most recent MRI showed an area of the brain which his doctor in Charlotte thought might be the origin of the seizures, and I have been very hopeful that that would be the case and surgery could be done on that area. Dr. Moosa told me today that he did see that area on the MRI and the seizures we describe would not be coming from there. So, that was a disappointment for me.
Because of the ESES I mentioned yesterday, Dr. Moosa wants Daniel to have a genetics work-up and blood was drawn for that today. Also, the neuro-genetics team came to see us this afternoon. There are a couple of genetic conditions that cause ESES, and they need to explore if Daniel has one of them. If he does, there are not surgical options to correct the problem, but there are medications that are known to do better than others for genetic cases of ESES. Also, for one type of genetic ESES, kids tend to outgrow it around their teenage years. For another type, it progresses into adulthood and does not improve. Obviously it is important to know if we are dealing with one of these genetic types of ESES.
Now, here we have a boy with an obvious brain injury with which seizures are often associated, so the neuro-geneticist told us that initially he did not think it would be worthwhile to pursue genetic testing in Daniel’s case, but when Dr. Moosa described Daniel’s seizures to him, and Daniel’s specific profile in regard to learning challenges, etc., he became convinced that we need to pursue this route because Daniel’s profile is very similar to the ESES profile that aligns with these genetic types of ESES. So I asked, is there a correlation between this genetic ESES and having a brain bleed in utero, and he told me there is not. Could Daniel really have both a rare brain hemorrhage and a rare genetic condition? This doctor said yes. When pressed, he said it is not necessarily likely, but important enough to confirm one way or another.
This is complicated, for numerous reasons, but one of the reasons is that Daniel’s blood can’t be sent out for this genetic testing while Daniel is an inpatient, because insurance won’t cover the testing under those circumstances. (Don’t get me started.) So, after Daniel has been discharged, they will arm-wrestle with the insurance companies to get it approved and then have the testing done. So, final determination on Daniel’s treatment can’t be decided until after we go home.
But, we are still waiting to have a seizure, and we need several seizures to confirm that they are coming from the same area in Daniel’s brain. So it is also possible that Daniel has ESES along with different types of seizures resulting from his prenatal brain injury. So, there could be multiple ways the seizures could be treated. The seizures that present in the typical way could be coming from one area of Daniel’s brain and that area could be potentially identified and then a procedure done to address those seizures, and then specific medications given to address the ESES.
Honestly, it’s making my head spin.
We are heading into Friday, and it is still unclear how long we are staying. If Daniel has several seizures tonight and tomorrow, and they are not coming from a focal point, it is conceivable we could leave on Friday night or Saturday and all go home together in time for Dave to catch his flight on Sunday afternoon for his class next week. If Daniel doesn’t seize, I don’t know what they are going to do. Daniel has asked if they will keep us here forever, and we are trying to make that a funny scenario to lighten the mood. If he has a few seizures and there is an identifiable focal point, then I think they will possibly proceed to a surgical procedure early next week, and David will need to fly home tomorrow evening. It’s all so complex, and we are trying to just let it unfold, but for a planner like me and a worker like David it is hard to just wait it out and wonder how expensive a plane ticket is going to be when you buy it two hours before the flight. God knows. He’s got us. Things will become clear. We are where we need to be. That’s all good.
David has been staying at an AirBnB near the hospital and I have come over to it this afternoon to do laundry, rest and get a shower. I needed to get all of this out to settle my brain, and then I need to lay down and sleep. I would greatly appreciate prayer for a good rest time for a few hours before I go back to the hospital for the night shift. Pray too for David as he is with Daniel at the hospital. Pray for seizures, as weird and counter-intuitive as that feels. Pray for Daniel – this is so hard for an 8 year old boy. Pray for our emotions and our interactions as tensions can escalate in a situation like this.
Thank you so much to those of you who are praying and encouraging us. We are very grateful. Thank you for loving our boy!