Braxton’s needs grew drastically as of December 2014. In December, Braxton started to have an extreme amount of spasming when he woke up. He would wake up around 3am each morning and have a spasm approximately each minute for about an hour. This would be very irritating to him, he would usually cry during this time. The spasms would slow, but not stop, and so he would have to get so exhausted that he would sleep while his body jerked around from the epileptic spasms. This occurred in the night, each morning, and often after afternoon naps, up to hundreds of spasms in an hour. I could not simply go back to bed, but instead spent each night up when he was awake. Braxton’s other types of seizures, such as generalized clonic-tonic, increased in this time, and many days we had to completely sedate him with rescue medication. I took him to emergency on December 18, and neurology suggested maxing out his medication, but this seemed to just make things worse. Homecare was aware of Braxton’s worsening conditions, and both Braxton and my extreme lack of sleep, and did provide us with some additional nursing care during this time. Thankfully after weaning one of his medications, Sabril, Braxton was able to gain some control over the seizures and returned to baseline of 30-50 spasms a day and 5 clonic-tonic seizures a week for a short while, but his sleep schedule did not improve, and his seizures have since gotten worse again.
In his medical assessments at his various clinics since December, it is clear that the seizures during December resulted in regressions in many of Braxton’s skills. Most obvious and dangerous is that he began to have much more reflux and a swallow study demonstrated he has frank silent aspiration. He is once again NPO. Currently Braxton has thrown up his first feed of the day nearly every day since the beginning of February. Braxton often requires suctioning to help clear his airway during this reflux, and also frequently needs suctioning after seizures, which is new. Braxton also had a regression in gross-motor skills, and so cannot move his body to a comfortable position in the night, or move his body to safely throw up without aspirating. This means that whenever I hear Braxton cough during the night I have to get up to make sure he is not aspirating. Braxton’s seizures have also become more frequent, especially in the early morning hours. As of January 18, there has only been three days without a generalized seizure. It is now the new normal for Braxton to have about four generalized seizures a day, which require monitoring, because if they last too long or occur too close together, emergency rescue medication is required. Most days at least two of these seizures occur during the night, which means once again I have to be up and monitoring him to make sure the seizures end and he doesn’t go into status epilepticus. Additionally, Braxton has developed a shake or shiver-like tremor when we wakes up in the night. We are exploring the potential causes of these tremors, and have been able to rule out temperature, glucose and ketone levels, and oxygen needs, but the cause remains unknown. As we don’t know if the shaking is neurological, we must be sure to keep a close eye and comfort Braxton during this time. Finally, as we have been told Braxton’s death will probably be because of him stopping breathing in the night, we frequently check his breathing, reposition him, and making sure his oxygen is blowing properly.
These new needs lead to very limited sleep. Braxton finishes his last feed of the day at 10:30 pm and starts his first feed at 6am. When I get opportunities to sleep during that time, I have to keep enough awareness to hear Braxton’s movements over the monitor. Seizures sound like rustling sheets, aspiration can just be a cough, these subtle sounds need to wake me up. Additionally there is a huge level of stress associated with these needs. I know that any night my son could die, and it is up to me to prevent this. If I sleep too long or too deeply I could miss an epileptic or cyanotic event that could result in his death. I have been on anti-depressants and sought counseling to help with this reality. Multiple times I feel that I get out of bed and get to Braxton just in time to suction him to keep him alive. But I am human, and a very pregnant human at that, and sometimes in sleep deprived states I can make mistakes. Recently I was so tired I knocked the side mirror off our vehicle going into a car wash. I have been so tired I fell down the stairs trying to get to Braxton in the night, resulting in having to go to the hospital to check on my pregnancy. My family doctor has written a doctor’s note outlining the need to get more sleep. I am worried that if I do not get a decent night’s sleep I will be too exhausted to labour, and cannot imagine how I would be able to take care of Braxton’s needs if I required bed rest or a caesarian section. Braxton will soon be two years old, and while I may be to handle extreme vigilance and lack of sleep for months, I cannot handle it for years. Although Braxton is complex medically and has many needs, he hopefully will be with us for years to come, and I need night help in place to keep attending to his needs long term.