As mentioned in the welcome page, we have decided to keep the girls home this year and they will do virtual learning. For us we felt we just couldn’t risk it. They go to a very big school in a very old building. The girls have been pretty much nowhere since March other then a few backyards, a haircut at a closed salon, the orthodontist for Hailey (before it opened for the day) and Jess has been to Sickkids twice for appointments/tests.
Of course the first worry we have is them getting sick and the unknowns of their medical conditions and Covid. Our other fear we have is what if we get sick..then what ? Our house is pretty crazy.
We have actually discussed this with Jess’s team. Who would hook up IV bags, disconnect her, meds, supply orders, manage her food? And then there is Hailey, and her insulin pump, cgm, carb counting insulin dosing the list goes on. No one can manage all this. Some days we barely can.
We don’t let anyone else handle Jessica’s line. This is her lifeline and she only has so many access points which realistically will be needed forever. She lost a PICC line access point in her arm early on due to a blood clot. The CVL she has now has been in since she was 18 months old (knock on wood). After figuring out how save her skin from infections the first 18 months of her life by finding the right dressings, cleaners and tapes we’ve had really good luck with this line. Also I should mention this line goes from inside at the tip of heart and exits outside her chest so we can access it for her daily 13 hr nutrition/meds needs. Because of all this it must be kept STERILE at all times to prevent a serious/potentially deadly blood stream infection. Even in Emerg or when admitted we do her line care except for running the hospital pumps.
There was no great solution to our question. We could rely on homecare but to be honest most people even in healthcare outside of SickKids have not experienced a child with Jessica’s condition or a CVL (central line and home TPN). Diabetes is a little more straight forward but even then not every nurse has a background in Type 1 Diabetes or would even know how to operate Hailey’s equipment. Giving Hailey a wrong insulin dose could be leathal, not picking up on a pump malfunction or creeping up high blood sugars also puts her life in danger.
PS I have asthma and a thyroid disease myself. So the list of someone trained able to all this if Danny or I are hospitalized with Covid is nil.
Jessica has not yet started school. She was supposed to start this fall, as kept her home for JK because she wasn’t ready and we were not ready to send her off on her own yet. Also we wanted one more year of trying to avoid all germs in school. Every fever is a minimum 48 hr hospital admission for her to rule out a blood stream infection. It means pokes and prodding and swabs (up the nose) even in non-covid times, then pumping her full of very strong iv antibiotics, one of which she’s technically allergic to. She has Red Man’s Syndrome to Vancomycin (antibiotic of choice to fight septic infections) so it has to run very slowly and last admission she needed to premedicate with Benadryl. It also means we are in isolation for the 48hrs awaiting the blood cultures to come back. Not fun at all, especially of all for Jess. Even while avoiding school last year she was admitted twice with the flu despite getting the flu shot.
How are the girls handling staying home? Pretty well I have to say. Hailey is a very social outgoing creature who will not let quarantine mess with that. She’s always chatting with one of her friends or cousin online. Many of her friends come by regularly for distanced outside visits and she’s been participating regularly in virtual programs with YCP (Young Carers Program. As far as school goes she’s not upset to stay home this year and a bonus is that three of her close friends from school are doing virtual school as well.
I do feel bad that she hasn’t had the opportunity to make her own friends yet, but she is a homebody by nature and we are lucky she has a good friend next door. Also she said she only wanted to go to school if she could be in Hailey’s class (lol) so that kind of worked out for her this year anyways.
To be honest for the most part it is way less stressful having everyone at home then sending them off. It takes so much planning and work to have them out on their own. So we’re going to try and make the best of this bonus school year together at home avoiding Covid and all the other nasty cold and flus
Virtual School starts Tuesday, so will see how it goes.. just had some Presecco delivered today 🙂
