So let’s get to the update! After a couple of weeks of my husband and sons being sick and coughing all over the house , the inevitable finally happened. Just like last year when Grace got sick one day after I finished a 55 hour race, she is now sick again , so it’s a good thing I didn’t register for the 55 hour this year because I would have missed it .
Instead of running, I’ve been playing nurse , respiratory therapist, custodian, nutritionist, etc while also being head cook and laundress . There’s no doubt that she would have been admitted if I’d taken her to the emergency room but I was hoping that I could employ all the skills I learned by watching the staff last visit to care for her at home . So far with lots of prayers by me and my friends , I’ve been successful and she’s been fighting this virus like the champ she is. There have been some times I thought I’d soon be packing a bag and loading her into the van , but she would improve and I haven’t had to do it yet. Lots of ups and downs . Today was a step backwards, but it’s the same thing when she’s inpatient. Yesterday she was awake and fighting her oxygen mask and today she was sleepy and I had to put her back on bipap because her oxygen was low and she was struggling.
Without the equipment we have here , we’d have probably been inpatient for at least 7-10 days if not two weeks like last year. It’s been six days so far, and she’s not well yet. With her condition of Lissencephaly , Miller-Dieker Syndrome, she is in a wheelchair and unable to sit up on her own , which means that recovering from respiratory problems takes longer than a typical person. Thanks to the Vest machine, bipap machine, suction machine, and oxygen concentrator we have everything here to help her breathe as long as she doesn’t need to be intubated . She’s a strong girl and she’s not been intubated in many years. It’s a frightening thing when that happens because oftentimes they can get secondary infections or become dependent on it and have trouble weaning off . But so far , so good!
As for me , I’m learning a lot and getting better at knowing what she needs . It can be a mystery at times! I really admire the intensive care nurses who have such great skills and instincts after years of caring for nonverbal patients and children. They have been kind enough to explain many things to me over the years and those little lessons have served us well this week. For example , they said not to rely solely on the monitors but to look at the patient , as well as how to read the details of the monitor.
So please keep us in your prayers. It’s been good for us to remain at home with the rest of the family , but it also means I have had some long days and nights . I missed three days of running, but I did get in a nice run with some friends yesterday while my husband took care of Grace. And a quick 3 miler today. Next week we are scheduled to return to our normal school routine, but I’m not sure that’s going to happen. The other kids are still coughing as well.
You might think this doesn’t sound like much but when she gets sick, there’s always an unspoken fear of will this illness be the one that takes her away. Over almost 19 years of seeing other parents lose their children to pneumonia, the fear is a valid one. I don’t think it’s something you can prepare for . I’ve seen the intense pain that my friends have experienced when a child passes away , at any age. It’s funny that as she’s gotten older I’ve felt less worried and more worried at the same time. She seems very strong , but I have also seen how quickly she can become extremely weak .
On a happy note, I’m starting to enjoy running more again. I was a little burned out and just too busy I think , but I’ve been getting in some trail miles with other people which makes it a lot more fun. Cool, dry weather is my favorite and we’ve been given lots of it this fall and winter.