So it was July 9 and we were going to be discharged. Again.
Prior to that we met with the ID team. A follow up was set for Olivia to come back the next Friday when Macy had her next adoption clinic appointment. We still had to meet with the neuro team and then we'd be ready to go. They came by later in the afternoon. I took notes.
So... because of her vaccine... Olivia first developed cellulitis (a skin infection). We knew this obviously from her first stay in the hospital. Additionally, from the MRI, the doctors found a lesion on her brain. They THINK it's transient, meaning it will go away. We will do another MRI in 2-5 months from now to see. On top of that, as if that wasn't enough, Olivia also developed a condition known as POTS. I had NEVER heard of this before. But it's out there. Google it. Believe me, I have. This is where all of her symptoms come into play.
POTS stands for Postural Orthostatic Tachycardia Syndrome. Two pages I've gotten a lot of useful information from are HERE and HERE if you want more information than what I'm going to share. Basically with POTS, you get an elevated heart rate and pulse when standing at times, and Olivia had the drop in blood pressure as well. This can cause dizziness, lightheadedness, chronic fatigue, nausea, "brain fog", headaches, confusion. With any of those symptoms, Olivia needs to immediately sit (or better yet lay down) and try to get cool and calm. Overheating can exacerbate a situation.
Many in the age range of 12-15 develop POTS following a traumatic illness or injury. For Olivia we were told it was due to the vaccine and/or the illness following. There is no cure and many in this age range will grow out of this by their EARLY 20s. EARLY 20s????!!!!
Management of POTS requires Olivia to really get to know her body and the signals she may be getting. Upon being released from the hospital, she was to begin increasing her activity starting with just 5 minutes a day of walking and adding in 5 additional minutes each day as she could, until she reached 30 minutes of activity a day. A Physical Therapist came to work with her the day I was home and gave her two sheets of exercises to do each day. She needs to add salt and lots of electrolytes to her diet to help blood flow. Instead of Gatorade with all the added sugar, she drinks a large cup of coconut water mixed with a little orange juice.
We are taking this day by day. She has done very well. Olivia does still have POTS, I think somewhere inside I wanted to believe it would just "go away." I document everything and there have been a handful of days with some symptoms. Grandma came a few days after she was released to help for a couple of weeks; she goes back today actually. It's enabled me to take the other kids out a little bit as Olivia was still in recovery, to run some needed errands, and as Olivia has gotten stronger, to allow her to become more active knowing there is another adult here in case of emergency.
She is pretty much back to her normal activity at this time, almost three weeks later... BUT there are times she has a racing heartbeat and needs to lay down for a few minutes, or a headache, etc. She carries a small Gatorade with her whenever she leaves the house in case she may need it as electrolytes will help regulate her again. And she has to constantly be aware. Even the slightest headache can't be blown off or ignored.
We have our first neuro follow up August 7 and then a second ID follow up on the 11th. We meet with her school's Special Ed Director, counselor, and nurse the first week of her first year of high school to go over all of this with them and put a plan in place for school. She will need access to electrolytes during the day. She will need to be allowed to carry Gatorade and use it if needed. She will need to be allowed to sit/lay down as needed in class or the nurse's office. She will need to take health first semester not second and save PE for second when we hopefully have an even better handle on what she will be able to do.
All because of a vaccine.
Though this is a hard new normal to grasp at times, we know we are incredibly lucky. It could have been so much worse. She could not even be here any longer. She is. It's manageable. But it's still hard to think of the what-ifs, or what-could-have-beens. Will she still be able to do track in the spring? Will she be able to walk around Six Flags next summer? Will... the questions could be endless but we need to take it step by step and day by day.
Thanks to God and my amazing friends and family we can do just that. And we will.
Macy LOVES her Grandma!
Olivia's first outing since being discharged: the Farmer's Market.
Macy's first restaurant!