I am referring to germs, they found us and apparently are tough enough to stand up to the copious amounts of Lysol used in our house. Jack has been sick for the better part of a week, he has been struck with what we thought was strep throat and some sort of upper respiratory virus (para virus) that is lingering and according to our pediatrician has the reputation of causing secondary pneumonia. The poor kid has not been feeling well at all, but I sent him back to school on Wednesday after being on antibiotics for 36 hours, and no fever for 24 hours. He looked awful and had no appetite, but we worry about him getting too far behind. I know, I am a contender for “worst mother of the year” for sure. The kid is smart, really smart, but slow, really slow. Yesterday, he came home from school and it was just the two of us sitting at the kitchen table sharing a bowl of soup. He was so tired he could not hold his head up. He shared with me that he did not feel well, but he liked that it was just the two us at the table. We talked about some very intense stuff, he cried, I cried, and told him that I was happy that he talked with me. I am not sure if it was the fever or the emotions brewing inside, but he needed me and I was so glad that I could be there for him. His fever is better today, but his symptoms are not. I will bring him back to our pediatrician on Monday morning if he is not any better.
Miss Sophie woke us in the middle of the night on Tuesday stating, “I don’t feel good…”, which is code for I am going to throw-up all over you in less than ten seconds. Thankfully she was on Drew’s side of the bed because it is closer to our bathroom. I yelled at him to get her to the bathroom a.s.a.p, since he was in a deep slumber. Just as he got her there, he yelled back to me “good call babe!”. Poor Soph, she practically turned inside out that night. Drew had to leave for work at 4 am for a very early morning meeting which meant that neither he nor I got any sleep. I washed five loads of laundry between the hours of 2 am and 7 am all the while attending to Sophie, doing Lucy’s 5:30 med schedule, and washing and cleaning. Sophie’s GI bug lasted only 24 hours, but it had me doing a subterranean cleaning for 48 hours. She was back to her happy perky self by Thursday morning.
Germs are the enemy in our life! Illnesses surround us this time of year, and we have to try our best to keep them away as any illness can be detrimental to Lucy’s life! Lucy’s immune issues are severe not only because she has mito, but because of the fact that she has secondary hemophagocytic lymphohistiocytosis (HLH), or macrophage activation syndrome (MAS). What happened to her in April as a result of coming in contact with the flu B virus can and most likely will reoccur when her body comes in contact with another virus. It is a difficult balance of living life and living in a bubble. We isolate our kids when they are sick as a way of protecting Lucy, but as you can imagine it is difficult. Lucy wears a mask whenever she is out in public, it always amazes me that she never complains about it, it is her norm. I have tried wearing a mask for an hour or longer, it’s uncomfortable not to mention hot. Our kids are programed to wash their hands the minute they walk in the door, eat, or want to play with their sister. We use copious amounts of soap, hand sanitizer, and Lysol products. We are aware of the literature out there that states anti bacterial products are to blame for the resistance to antibiotics, I don’t disagree that there is probably some truth to those statements. However, in our situation it is our best defense at keeping Lucy “healthy”.
So far Megan has been spared of any illness. She and Sophie share a bedroom, and on Tuesday night Megan woke up and moved herself to our bed saying that she did not want to breath in whatever Sophie was throwing up. Lucy too has not shown us any signs that she has what Jack or Sophie has, but she is “off”. We were at DuPont on Friday for an appointment with the cardiologist who specializes in arrhythmias(I’ll update in another post about this appointment), while we were there Dr. R saw our girl and ordered labs and blood and urine cultures, he agreed she does not look good and is concerned.
We are praying for good health all the way around, that Jack starts feeling better, and that whatever is causing Lucy’s symptoms disappears without a trace.
Thanks as always for your thoughts and prayers.
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