Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Today was a very exhausting day. We woke Von up at 5 am, and we tried to get juice in to his belly. At age 3, he has decided that juice is disgusting. He prefers water and milk right now, and we needed sugar in his body to make his medication work. It was just after 7:30 am when we arrived at the hospital. Von immediately made a bee line to the toys, and he started playing with all the trucks in the toy room. We got our mandatory visit from the woman that runs family services. Von typically ignores her attempts to help him learn about the mask for surgery. She hooked Von up with a ton of toys for his pre-op room.

In pre-op we met with our Anesthesia team, and we went over all the changes to Von since the last time we had been there. Von did really well with this group. It was an all female team today, and the only tears were for a poke to check his blood sugar. We had a minor hiccup when his finger would not stop bleeding. The poor kid got blood all over the floor and his toys, and it was quite traumatic for him seeing the blood. We did our best to hastily wipe up all the blood, and it took about 15 minutes to get his finger to stop bleeding.

After consulting with the dentist and anesthesiologist we determined we would use a slow gas to put Von to bed. The Anesthesiologist was concerned about his heart, and wanted to minimize the amount of drugs given to him. We were able to get him to sleep without pain medication, and he was able to wake up without pain meds. She said the more drugs in his system the harder his heart will work. Von was taken back to the OR, and I was able to help him go to sleep. He had no tears at all going to sleep! This was a first for us.

The whole surgery took about an hour. The dentist came to talk to with me. She had to crown 8 of his teeth. His back left molar showed an infection in the X-Ray with an abscess.  She said to reduce infection and risk to his heart that the tooth had to be taken out. In order for Von to be cleared for heart surgery, his mouth must be healed and showing no infection.  We are hoping this is the case.

Von is still pretty sleepy, but we were able to be discharged. He is cranky and in and out. We hope he will be able to eventually eat today. Overall the experience went really well today. I was incredibly nervous given how weak his heart is right now. We expect heart surgery to be early March. We have to now wait at least 4 weeks, and Von will be cleared for surgery. We are grateful the dentist took care of all of his molars. This will reduce his need for further sedation.

We have set up a T-shirt booster for Von’s heart surgery. Our hope is those interested would buy one and wear it on the day of his surgery. If you are interested in participating in the booster, Please click the link at the bottom of the blog.

My leave was approved, and I will be on leave through April. There is still a lot of uncertainty about being able to return to work. The nursing shortage has reared it’s ugly head. Von has 15 open shifts this month. If this continues, I will have no option but to leave. I really hope we can figure out a solution that will work for all of us. I’m remaining hopeful. We are preparing for the worst in the event we don’t have care for Von. Right now we are hoping to generate income via this blog – we have not to date. Thankfully we are able to run ads on this page for free, and this potentially could help us earn modest income.

My girlfriends are diligently working on a benefit for our family. As details are more solidified we will update everyone. We realize that not all of our family is on Facebook. Due to the significance of what is going on with his health – we will be updating on this blog and on his Facebook page. If you have questions, please feel free to reach out to us by phone, text, or email.  Thank you all for following!

Click her to Buy a T-shirt!






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