Warning: This might be a long post. Bear with me.
This past week has been one of the most stressful since Matthew was born almost 21 years ago. One week ago today we made the decision to keep Matthew home from his day program. He had been a bit off during the weekend but didn't seem convincingly ill. No alarm bells were going off in my head. He seemed okay. He spent the morning enjoying cartoons. Mid-afternoon he started coughing and became a bit agitated. We did the usual. We gave ventolin, tried to calm him down, changed his position to improve his airway - things that have always worked. This time they didn't work. Within 20 minutes he had gone into respiratory failure and we called 911. He was rushed to hospital and has been intubated in the ICU since that time. They tried to remove the breathing tube last week and the attempt failed. He aspirated during the attempt and his lungs became compromised. I was in the room when it happened. Tomorrow the team will try to remove the breathing tube one more time. If he fails he will require a tracheostomy, and the conversation will shift in a direction we have spent 21 year trying to prevent.
The hope remains that this is an acute event from which he will recover. The doctors remain optimistic, and for the most part so do I. Interestingly, the nurses have been more cautious and affirm that my concerns about tomorrow are not unrealistic. With kids like Matthew there is always risks that these events will go sideways. I am not going to lie. I am completely freaked out about tomorrow. Either the tube will be removed and he will start breathing on his own, or we will have another setback.
Today I came home from yet another day of sitting in the hospital watching a machine a breathe for my son - something I have been watching now for eight days. I am holding it together. Barely. I can feel the cracks starting to form.
When I opened the mailbox there was a bright red package. It took me a bit to open the card. It was sealed up pretty well!! But inside there was a lovely card from
@Tabitha. The package contained wonderful red hiking socks (I hike a lot!)- proceeds from the purchase will support literacy. In the toe there was a heart shaped ornament - I almost lost it then. The package also contained three murder mysteries I can't wait to start reading. I recently finished a book while sitting in the ICU and I have been "between books" ever since; always stressful for an avid reader. I already have one of the novels in my purse to go with me tomorrow to the hospital. With any luck I won't have time to start reading it because I will be too busy taking pictures of my son
without a breathing tube.
Many doubt the validity, sincerity, and authenticity of online communities. Those of us at WC2 know that these virtual friendships are real and they matter. Today, a women who I know only by an online avatar did something pretty amazing. She offered a moment of light in a week of darkness. It was a bit of Christmas magic.
Thank you Tabitha. I am grateful.
