July 2017 was the hardest month of parenting Lilly since birth. It basically sideswiped us and took us by surprise. Since birth our whole ER plan has been treat early to avoid any kind of hospitalization. Her doctor’s biggest fears are of her picking up a supper bug while being hospitalized. I have taken Lilly in when people have thought I was an over protective parent and sometimes I have even questioned myself on why I was taking her in. July 8, 2017 changed our life forever…
The first week of July Lilly struggled with a virus and above average heat. It was a Saturday and as I sat down to eat super that night Lilly started throwing up. I quickly calculated in my mind how much liquid intake she had and then subtracted how much she threw up to realize that I needed to take her to the emergency room for anti throw up meds and possible IV fluids. (Something that has became second nature to me) The Hubby rolled his eye’s at me stating that we would need to go in and I headed off to our local Children’s Hospital.
We can only take Lilly to our local children’s hospital which is an hour way.
Our first seven hours in the ER was in Lilly’s typical style in the sense we caught up with a sr nurse and got the routine things she needs to help get over the virus. As I went over her stuff with a doctor, (who we have gotten to know over the years) we made the realization that we have a common person. (PEDS is a small world) As I was starting the conversation about us being discharged from ER that’s when things went sideways on us.
Her vitals started tanking.
The medical team and I are looking at each other thinking what is happening? Where did this come from? In the next nine hours I watched my child go from level 3 cerebral palsy to level 5 cerebral palsy in which she needed full body support and went into respiratory distress. While in PICU a calmness came over me. My Mommy Gut was telling me that this was one of the many hiccups in Lilly’s story and that her story is still being written. During the time in PICU I learned how blessed we are that it was our first admission with her. The common cold put us in PICU and over the years she has had many virus that lead to ER visit. The best way to describe what was going on in my mind is a quote from my personal Facebook status.
In total she spent thirteen days in hospital which she fought hard and recovered medically really well. Lilly also had a second admission due to an UTI for 3 days. In the weeks following her PICU stay it has became clear she has some regression in her legs, higher fatigue level and mentally her flexibility to process things had slowed down. The way she got sick so fat has left some questions so we are investigating them which means more doctor appointments.
Personally being thrown back into a situation slimier to the original birth trauma has set me back. Before July I had so many plans for this blog and my personal life but right now I have had to scale back some to accommodate all the excess things that have came up in the last month . This summer was supposed to be full of fun things like horse back ridding, going to the zoo, walks, and hanging with friends but in reality we didn’t have much of a summer at all.
For now we are going through the valley of recovery…