The first week of May I started to notice some signs that concerned me. Harper was paler than normal, coughing, but not a sick cough, and didn’t seem like herself. I called her cardiologist to get his opinion. He said it sounded like her failure was getting worse, which was expected. He wanted her cough checked out to make sure nothing else was going on.
I called our pediatrician and she decided that since we had our appointment at the Down syndrome clinic on Thursday, they could check her out then. Everything checked out fine at the appointment and we went home.
That next night things took a turn for the worse. Harper just wasn’t herself. She was crying and not wanting to eat or sleep.
About 5 a.m. on Saturday, May 10, I called Akron Children’s After-Hours nursing hotline. When I explained her symptoms, the nurse suggested I take Harper to the ER. I woke my sister up so she could watch our other children.
In my naivety, I thought they would give her some meds and we would be sent home. Boy, was I wrong.
When we got to the ER, we went straight back to the triage nurse. Knowing what to do since we had been in the ER before, I started explaining her symptoms. The nurse was hooking up a pulse ox to her foot and intently watching the numbers. She asked me what she normally was at home and I told her mid-to-high 80s. I looked at the screen and saw 58.
What happened next will be forever burned into my memory.
She picked up Harper in her carrier, said “Follow me,” and ran with her back to the ER. She said something (to this day, I have no idea what she yelled), but people came running down the hallway.
My heart literally sank. I thought I was going to faint.
They took Harper out of her car seat and put her on the huge bed. She looked so tiny and limp. Immediately people were surrounding her, trying to put in IV lines, taking her temperature, checking her breathing.
I remember standing back thinking that what I was looking at wasn’t real – it was all a dream. Only hours before, I was holding my little girl, cuddling her and giving her kisses, and now she was a pincushion with oxygen and IVs everywhere.
I wondered if I should have called sooner, but I kept telling myself that she was just at the doctor’s on Thursday and they thought she sounded good.
After about an hour in the ER, we were transferred up to the pediatric intensive care unit (PICU). Again, everything is a blur.
I remember sitting on the couch in the room, with masks and gowns on, while the nurses and doctors were running around our daughter. At one point I counted 10 people, not including Aaron and myself, in her room.
Then they told us they needed to intubate her. I needed to leave the room for this. I wandered around the PICU in a daze. When I finally got back to her room, they were suturing IVs into her neck.
What in the world was going on? I thought my daughter was just going into more heart failure and was going to be given medicine and we would go home. Instead, she was very septic when she was admitted.
We have now been in the hospital for 31 days and counting. I will never forget the feeling when she was rushed away from me in the ER and everyone came swarming around her.
As a mother, it is one of the worst feelings in the world. I second guessed myself for a long time after that. Was there something else I should have done? Should I have called sooner?
The doctors in the PICU eventually assured me that no matter when I brought her in, she would have still ended up in the exact spot she is now. The sepsis was so bad, it made her heart failure worsen faster than anyone expected.
So much has happened since that day that I can’t fit it into one post. I’ve reached new lows I never thought I would reach.
But there have been highs as well, like being able to hold her the following day, Mother’s Day.