Unwanted drama

Jackson ended his first year at Perlman as the center of attention… attention his parents wished he didn’t need. It was lunchtime two Thursdays ago when Josh got a call from the Children’s Hospital Emergency Room. It went something like, “Hi. This is the Children’s Hospital Emergency Room. Do we have permission to treat Jackson?” Josh had no idea what was going on. All he knew was that Jackson should have been at the Perlman Center with his therapy class. A quick call to his parents, who had taken Jackson to Perlman that day, revealed Jackson was fine, but in the emergency room and we shouldn’t worry. Needless to say, Josh and I rushed down to Children’s Hospital. When I got to the ER, I found my little guy smiling, cooing and taking a bottle like usual.

Jackson was in the harness around 11:00 am that day in his therapy class.


The picture above is Jackson in a homemade harness, similar to the one at Perlman. The harness allows him to stand upright and move his legs at the same time.

He was getting sleepy so one of his therapists took him out of the harness. When she took him out, he was unresponsive and didn’t react when she called his name and rubbed his sternum. It was around this time that my in-laws walked into the room to get him because class was ending. They saw him laying on the floor, unresponsive. The therapist called a code and a few minutes later, 10-14 people rushed into the room and whisked him off to the ER. However, before the code team came in, Jackson came to and started smiling and being his normal, cute self.

We have no idea what happened. All we know is he went unresponsive for about two minutes, then came to and was fine. One hard part of being a parent to a child who cannot speak is that I can’t ask him what happened. We’ll never know. We can only hope that it doesn’t happen again.

This week was also an action-packed week. Josh and I had tickets to the Reds game on Tuesday night. Aunt Heather was babysitting.


Jackson coughed a lot before Heather arrived. I thought he had something stuck in his throat. Twenty minutes after we got to the game, we received a text, “Hi guys, we were 95% done with meds then… big barf. He’s doing great though, all smiles. Don’t come home.”

Side note: First thought as a parent, after concern for Jackson, was to feel guilty that I left Heather with a vomiting child. Sorry Heather.

When we got home from the game, we found a restless little guy, who was up most of the night. He had a cold. I thought everything was fine until I called the doctor the next afternoon to see if we should come in. I told the doctor he had a fever, cough and maybe a sore throat. The doctor said to come in to make sure he didn’t have pneumonia. Even though I thought he was fine, I had an immediate freak out at the mention of pneumonia. We went to the doctor and had a great appointment. Clear lungs. Yay! Just a virus that should go away in a few days.

Here are the questions that go through my head when he’s sick:

  • Is he going to be okay?
  • Do we need to go to the doctor?
  • Do we need to go to the Emergency Room?
  • Are we going to be admitted to Children’s?
  • Does he need any meds?
  • If so, will the new meds negatively interact with his anti-seizure meds?
  • What’s wrong with him?
  • How long will it take him to get better?
  • Is he going to need a feeding tube because he’s not eating?

Just a tad bit overwhelming. It’s hard not to overreact because Jackson can’t tell us what’s wrong. He can’t point to his throat or his stomach like it hurts. We always have to guess at what’s wrong and hope we get it right.

Even though the past few weeks have been slightly stressful, we try to stay positive and hope for the best. Will there always be drama? Probably, but I hope we go months or even years between illness. Will I get stressed? Yes, definitely, but I hope to handle it better in the future. Will I totally freak out if Jackson ever gets pneumonia? Yes, definitely.

I wanted to share a little of what we’ve been going through and what it’s like when he’s not 100%. Even though we’ve been to the ER and pediatrician recently, we’ve seen lots of improvements in Jackson over the past few weeks. We’ll focus on the positive in the next post and tell you about the cool things that Jackson’s been working with.


8 responses to “Unwanted drama

  1. We are always glad to get Cincinnati Bliss! Since we pray for the three of you each day, we are thankful for the updates we get on Jackson. He is an amazing little guy and so are his parents. What a neat picture of Heather. She, too, is a special gal. Have a great week We will see you in October. Love you. Aunt Jane

  2. Thanks for sharing. I think of you each day and am sorry for the stressful times you face. Jackson looks like he is having so much fun just bobbing in his harness. He is lucky to have such a wonderful family. You remain in my prayers.

  3. We are constantly thinking of you guys and praying for sweet Jackson! I could relate from personal experience with Ruby to a lot of the feelings and concerns you shared in this post, thank you so much for sharing and for an update!

  4. Wow, Santina that does sound stressful and that’s a lot of questions. You and Josh are doing so wonderful with Jackson and I cannot thank you enough for sharing. You inspire me in so many wonderful ways. Keep up the good work, Momma!

  5. Hey guy,
    You have the stress and concerns of all parents. We also fretted about pneumonia, viruses, choking, etc. so in that respect you are a normal parent, but your situation is very much intensified. We think of you and baby J. everyday and see that he seems to enjoy all of his new bouncies. Love, Aunt Elaine

  6. You all shouldn’t feel badly for me!! I love that little man more than words and any time I get to spend with him is precious to me…barf and all!

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