John had a very full day today. We were originally supposed to begin with physical therapy at home, but after being up with him until almost 3:00 a.m., his therapist kindly allowed us to cancel so he could rest.

We still made it to Children’s Mercy for his appointments. Our first stop was the outpatient infusion lab, where they attempted to draw blood for labs through John’s port. Unfortunately, they weren’t able to get the blood draw because his port still will not draw back. It flushes perfectly and works well for infusions, but this is now the third week in a row that it has not been able to draw blood.

After that, we moved quickly to his Genetics appointment, and the Palliative team joined us partway through. We discussed the next steps for his port and received orders for a chest X-ray, contrast testing, TPA, and a possible consult with Interventional Radiology about placing a new port if the testing shows it is needed. His geneticist also ordered a liver and spleen ultrasound, along with a skeletal survey.

While we were already at the hospital, John’s neurologist called, and we agreed that we should move forward with Botox in his masseter muscles as soon as possible to help with the dystonia and severe tongue biting. We are very hopeful this will allow us to reduce some of John’s methadone and morphine use. The methadone has helped control the tongue biting much better, though not perfectly, but it has also made John extremely sleepy. Right now, he is sleeping around 22 hours a day, and that is not the quality of life we want for him. We want him awake, comfortable, and able to be present with his family.

Botox is the next step. Please pray that it is successful and comes with very minimal side effects.

Unfortunately, John will need anesthesia for the Botox procedure. Because his respiratory system is so fragile, he will be admitted for at least one night afterward so the team can make sure he recovers safely. General anesthesia always makes us very nervous, but we have tried everything else. Please pray for his safety through this as well.

I forgot to take a picture of John until after we got home, but this photo shows his mood perfectly while he was awake today. We were honestly surprised that he stayed awake through most of his Genetics and Palliative appointment, and he even gave his doctors so many smiles. A hard day, but also a day filled with little moments of hope.

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