Update & Request for Prayer

Hi Friends,

Many of you know from FaceBook that we reset the clock December 23rd after over a year and a half seizure-free (19 months and 11 days). We don’t know exactly what caused Daniel to have a seizure. There are several possible contributing factors, but for a child with a baseline abnormal EEG, the reason will never be clear. It has been a week since the seizure. Daniel is not showing cognitive impairment after that very long seizure, for which we are incredibly grateful. He had noticeable Todd’s Palsy for a number of hours and continues to have a little bit of a drooling issue and significant behavior issues since the seizure. He did begin an anti-epileptic medication a week ago after the seizure and that appears to be taking a bit of adjustment, which is no surprise. Please pray that he can transition to this medication and have his body adjust to it before starting back to school next Wednesday.

I am specifically asking for prayer for David and me as we try to make decisions regarding Daniel’s care in light of how this seizure transpired. This seizure was different from past seizures in that his convulsions were slight, not triggering our seizure monitor. We are trying to determine if additional devices should be used, such as a motion monitor that goes underneath him and a pulse oximeter that could alarm if his O2 sats were to go low. David, myself, and Daniel’s aide were sitting in the living room talking with Daniel’s monitor right there. What was thought to be just Daniel adjusting himself turned out to be a seizure. The next day when we were able to go through the recordings on the monitor we were able to tell that he had started seizing 13 minutes before we went into his room. He had vomited without us hearing it or seeing it and for a period of time had been face down in his pillow (and the vomit). This discovery was very frightening for us, as this is often how people are found after SUDEP (sudden unexplained death in epilepsy). We have an anti-suffocation pillow for Daniel, and I believe that contributed to Daniel’s survival last week. Once we finally recognized what was happening and began to treat him, the seizure rescue medication which we administered did nothing because he had been seizing for so long. In the past we have found that if we don’t give the rescue med within 3-5 minutes, the seizure will be hard to stop. As usual, it took the paramedics about 15 minutes to arrive and we got Daniel into the ambulance as quickly as possible. He continued to seize while we were all discussing what medication he could or couldn’t have within a short time of the rescue med we had already administered. Then the paramedics had to calculate and recalculate what dose he should be given and all of this seemed to take forever. Whether the wrong medicine was decided on, or whether it wouldn’t have mattered, I don’t know, but once the medication was given the seizure stopped (good!) but Daniel’s breathing tanked (bad!). We were still parked outside of our house, both paramedics and me working on Daniel, and no one able to drive the ambulance. They told me they had called someone else to come drive and that it would take that person another 15 minutes to get there. Meanwhile they had decided that we needed to go to the closest hospital to get Daniel stabilized and we would go on to Levine Children’s Hospital later. I held Daniel’s head and neck in a position to keep his airway open while the paramedics communicated with the hospital and squeezed a bag to keep air going into Daniel’s lungs. Daniel began to turn purply-blue across his face and we were still sitting in front of our driveway! I prayed out loud and cried out for help while it seemed that we were very close to losing Daniel. Finally, one of the paramedics got out and started to drive and we went as fast as possible to the hospital. We were met by a room full of doctors and nurses and they began to work on Daniel. In talking about it since, we have discussed the “stab-fest” that ensued as they tried in five different places to get an IV going. Daniel writhed and screamed, which was tremendously reassuring to me – he was breathing! Breathing and conscious enough to object strongly. Hallelujah! This week he has shown off his bruises like badges of honor to anyone who will take a look. Amazingly, his wit and verbal abilities, and reading and mental calculating have not been impaired. Praise be to God. Brain damage can begin to set in after 20-30 minutes of seizing and he had seized for at least 45 minutes. We are immensely grateful to God and all who worked on Daniel that our family is still intact.

Honestly, I am still suffering from the trauma of this experience. We are keeping his current monitor at low settings which involves alarms going off whenever he moves around in his bed for longer than 25 seconds. So, we are being woken up multiple times each night and checking on him numerous times as well. This is very wearing. We have requested night nursing, and Daniel qualifies for an LPN monitoring him at night. As you may know, there is a shortage of nurses right now, so please also pray that we will be able to hire someone for this purpose. The aide who has been staying with us three nights each week will be moving away and her last day is in three weeks. We haven’t had her stay this last week because I am just too nervous so far and Daniel has been very sensitive to who is caring for him. He has been very anxious as well and often says he wants to stay awake all night so he doesn’t have a seizure. He has also talked about wanting to die and hating his body and hating that he has seizures. This is very hard to process for all of us.

I think I had gotten to a place, after 19 months, where I thought maybe Daniel wasn’t going to have seizures anymore, and maybe we had even gotten a little complacent. This experience last week was a sharp call to vigilance. This is the thing that people who don’t live with epilepsy, or don’t love someone with epilepsy, can’t really understand. Epilepsy is dangerous, and you always have to be prepared to deal with a seizure. It is a challenging way to live. My faith is not shaken – I know God has us in his care – but it doesn’t remove the need for careful monitoring and preparedness. I am shaken, however, and I know the lack of sleep and constant attention is draining me. We are struggling with being back in a place where a seizure can happen at any time (ha! We were really always in that place, but as the months went by we had settled into a new normal that didn’t have frequent seizures), and Daniel is back on anti-epileptic medication. That itself is a quandry for us – when he was on AED’s before they didn’t stop him from having seizures, and in fact, our records show that he had more seizures ON AED’s than he did OFF of them. Now, we sense some of Daniel’s behavior issues stem from medication side-effects, which are another issue to try to solve. My head is spinning much of the time with details about seizure monitors, oxygen monitors, medication, behavior issues, being on high alert, etc. I’m a little dizzy.

Anyway, I guess all of this is to say we need to be upheld in prayer. We need wisdom. We need peace and sleep and the right people to care for Daniel at the right times. David and I had planned a get-away for mid-January (to St. Lucia! So exciting!), but it seems that we will need to cancel that trip as it is just too soon to leave Daniel in what is currently an unpredictable situation and requires more people to care for him than we have arranged for. Maybe we will be able to push that trip into the Spring. It is okay to cancel it, but it is disappointing as we had been really looking forward to it, so I guess I am processing feelings about that too. If you have read this far, bless you. Thank you so much for caring enough to do that. Please pray for us as you think of it. Love to you all – Ruth for all of us