Ryan has been status quo for quite some time now which has been such a blessing. Saturday morning at 130 am, I woke to Ryan having continuous seizures. Just before 2 am, I gave him Diastat, the emergency seizure medication we use when he has grand mal seizures. He continued to have myoclonic jerks every 2 minutes for the next thirty minutes. I wavered between calling 911 and praying he would sleep it off. Thankfully the seizures stopped. After a few hours of sleep, Ryan started seizing again, but they were not as bad. Throughout the day, Ryan continued to have many seizures, much more than his baseline normal. At 4 pm, he again had a significant amount of cluster seizures that would not subside. I gave him another dose of Diastat. The seizures eventually stopped but he did not sleep. At 730 pm, after ten big seizures in a fifteen minute period, Brad and I loaded him in the van and drove to the ER. Once we got in the van, the seizures stopped. Brad and I sat in the ER parking lot for at least ten minutes trying to decide what to do, and I finally decided to head home. Having been an ER nurse for many years, I knew that if we went into the ER and he did not have any seizures, we would be sent home. At this point I was both mentally and physically exhausted from all the stress and poor night’s sleep. My sister came over shortly after we got home. At 930 pm, the seizures started up again so Amy and I loaded Ryan in the van and off we went to the ER. Thankfully they did not stop this time so the ER staff saw what I had been dealing with since 1 am. Ryan got 3 mg of Ativan and a dose of IV Keppra. Travis and I made the decision to have him admitted to Children’s knowing if we went home this would not stop. Ryan and I took the ambulance trip to Omaha and got to his room at 1 am completely exhausted and stressed out. I spoke to one of the residents shortly after we arrived thinking she would write orders, and something would be done about his seizures. Over the course of the next eight hours, Ryan was put on a heart monitor but no other interventions were done. He continued to have numerous seizures with an especially difficult time from 230 to 3 am. At this point he was starting to almost choke on his saliva when he was having seizures which scared me as I have never seen him struggle like that. At some point around 6 am or so, a second resident came in the room. I told her of my frustration that no one was doing anything about Ryan’s seizures even though I had told the night nurse repeatedly what was happening – and the night nurse and tech both saw his seizures numerous times. She was not exactly kind and informed me they could not do anything until the neurologist showed up which I knew was not true at all. At this point my patience was completely gone. At 9 am, I told the nurse I was beyond irritated, stressed out and angry that nothing had been done in the past eight hours even as Ryan continued to have numerous seizures. She finally got an order for Ativan which helped Ryan fall asleep for a short time. I apologized for my attitude but explained that at this point, I had gotten one hour of sleep in the past 24 hours and was exhausted and stressed out. I even told someone I was a big, hot mess fully understanding my attitude was probably not the best but repeatedly explaining why. Soon after, the nicest pediatrician came in the room and saved the day. I explained to her that Ryan had now missed two doses of medications and had not had his tube feeding since 5 pm the night before. She was compassionate and a bit frustrated but got things moving. From that point on, Ryan’s stay was unremarkable and things started to improve thanks to the pediatrician who made some waves and got things done. Ryan got a big dose of Dilantin which helped a lot. I knew he also needed to sleep and that the lack of sleep was contributing to the continued seizures. He finally caught a break and was able to get some much needed rest. We also saw a neurologist whom Travis and I both loved. She ordered a new medication to use when he has cluster seizures. The seizures began to slow down, and Ryan was able to come home today. He has been home for almost four hours now and has been sound asleep on the couch the entire time. I have a feeling he will sleep for the next couple of days, and hopefully his brain will settle down and reset back to his baseline.
Needless to say, it was a very stressful few days. We have dealt with grand mal seizures many times, but have not had this number of smaller seizures that continued to cluster together and kept getting worse. Even though I got a good night’s sleep in my own bed last night as Travis spent the night with Ryan, I am still completely exhausted. I think this is the most stressed I have been about Ryan since his brain surgeries several years ago. I just want to give a huge thank you to everyone who showed their concern and prayed for Ryan. Thank you to my sweet friends who brought meals too. What a blessing you both are to our family!
People often do not know what to do when someone is hospitalized or going through an especially difficult time. We have done this hospital thing more times than I can count so I am going to share just a few things to consider that really apply to anyone going through a hard time:
- Do not ask “What do you need? Can I do anything to help?” Just do it. If you ask if a meal would help, I will tell you no. I do not want to be a burden. I do not want to feel like a victim or that I cannot handle this on my own. Because I handle it on my own every day. Just put your thoughts into action. If you feel led to take a meal to someone or drop off a gift card, just do it. I promise it will be very appreciated. I had one friend bring two meals over with a very sweet card that essentially said “we are so sorry and are thinking of you”. Simple and to the point. Those two meals will be eaten this week as we recover from the stress and fatigue that takes days to get over. Another friend simply said “I am bringing you a meal and can do either Sunday or Monday. Which do you prefer?” I answered her and did not have to have the ongoing conversation on what she could do to help. Just today while eating dinner, a third friend stopped over unexpectedly with a big bag of food from Trader Joe’s and a beautiful fall plant. I cried when I saw her because I was so stressed out and her thoughtfulness meant so much. When trying to maintain one child in the hospital and the rest at home, life is much easier when someone just says what they are doing for you instead asking what you need. And trust me, those gestures are so very appreciated!
- Do not get mad or take it personally when I do not respond to you. If you ask me how I am doing and do not hear back, please do not text me again and say “are you there?” Of course I am here, and I am busy trying to survive through the stress and changes. I am trying to take care of my child and not think the worst. I am trying to maintain my composure without falling apart at the seams. I am dealing with doctors and everyone else who keeps coming in the hospital room. And I still have to stay strong for my other kids. People who have children in the hospital may have the time to respond, but usually they do not have the energy. It is very difficult to say the same thing over and over and over again. It is exhausting. And lets face it, family comes first. I may call you one of my very best friends, but I may not stay in contact with you because it takes all my energy just to keep my siblings and parents in the loop – and they need to know what is going on before anyone else finds out. Just because you do not hear from me does not translate to I do not care about you.
- Do not tell me about every situation you have had with your grandma, dad, cousin and uncle. If the situation was different, and I was not sitting in the hospital with my child trying to just survive the moment, I would care and be interested. But right now, in the midst of the acute situation I find myself in, I really do not want to hear about what worked for your relative. I do not want you to comb through all the choices we have made for our child and dissect what else we can do or the latest and greatest new technique or medicine you found on the web. Please just listen and be present in my pain and concern for my child. Please just show support and understand we are doing the very best we know how to do. We have to make decisions, and we worry all the time that we are making the wrong one. Hearing about how your uncle saw a doctor in the next state over is not pertinent to what I am facing right now. I do not intend to sound selfish and self centered. And I definitely do not intend to come across as an insensitive friend when you chatter on and on, but honestly, I do not want to hear it right now. Please just respect the choices we have made for our family.
- Know that even when I do not say it, I really care about you. I appreciate the prayers. I need your support. Sometimes I feel like a complete burden and worry about what others think. I am weak and I am imperfect, but I am doing the best I know how to do. Sometimes the emotions and stress are just too much to bear. Your love and support is invaluable. I am just not always good at verbalizing it.
I hope these tips are received well, and I say them with good intentions. These are things I have personally experienced and also some I experienced during my days as a floor nurse in the hospital. It is amazing what patients and families tell the nurse. Whether a person or family is facing a difficult time with someone in the hospital or they have lost a dear family member or they are facing the loss of a job or whatever it may be, being present is the most important job you can do. Your actions speak volumes. Your listening ear is appreciated. It is easy to feel helpless, but when heartache and stress come, love can be expressed in many ways to show support. Again, do not ask. Just act.
Thank you from my family to yours for the prayers. I cannot express how much it means to know so many have been thinking of Ryan and praying for his health. You are all so very loved!