Covid, TPN and Autism…

Covid has changed life as we know it. Honestly it’s made things so much more complicated. It’s affected mental health, which is devastating. More importantly, this has affected our kids. Our kids are suffering so much. It’s heartbreaking.

Virtual learning was a complete bust for us. It was a nightmare. Trying to keep him on task was such a challenge. His ADHD makes it nearly impossible. I have so much respect for his teachers. They were amazing in finding ways to get him engaged and his work done. We did some online, and some in packets. It worked for us. In the midst of all this, I got a phone call about Mathew. See, we’d been on a wait list for an autism assessment since June 2019. It was a long wait. The facility that does his OT called and said they had an opening. Did we want it? YES! YES! We were able to get his autism assessment done in May. I was such a nervous wreck. I had all my papers, checklists i’d done, notes with my concerns. Now, they told me this test was about 2 hours long. He was done in under an hour. I felt defeated. I waited 3 long weeks for the results. Finally i get the call to schedule an appointment for the results. The day comes. I’m on edge.. She looks at me and says “Well Mama, you were right. He has autism.” Not only does he have autism, but he has major sensory issues along with it, and pica. To finally be heard after years of advocating. I cried. I cried that I had finally been heard and I could finally get the help for him! Resources were now available. Knowing this, that he’s autistic changes absolutely nothing. My son is such an amazing child. He’s so joyful, so kind, he’s just an amazing kid. For 6th grade we decided to homeschool him. It was not an easy decision, but it was the right one for him. So we found our curriculum and started! He wants to share our journey. He wants to give a glimpse of him, autism and raise awareness. So, we created an instagram account. Check it out!

So…. in April I was placed on TPN. It was a mess. I wasn’t tolerating my J feeds hardly at all. My labs were getting a bit worrisome. This caused my team to decide i needed temporary TPN. This would help stabilize my nutrition and hopefully stabilize my weight. This was important because i had lost about 40lbs to September to April. It was bad. My nutrition was so unstable. I left me weak. Unfortunately we learned pretty quickly that 2200mL of TPN 7 days a week, isn’t going to work for me. My kidney couldn’t handle it and caused some problems. We settled at 1700 ml. I tried TPN 3 nights a week, and enteral the remaining nights. I am unfortunately still struggling to get adequate nutrition. Eventually we’ll get it.

Now, I know things are stressful. Things are different, It’s scary, frustrating. I know dealing with all the changes is difficult. Please don’t let it overcome you. If you are affected mentally, please seek help. We all need help sometimes. You are loved, worthy and important.

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