Mr. Bug

It’s been 8 weeks since we last made the drive down to Children’s Hospital. I’ve thought about visiting our liver transplant coordinator, I’ve thought about hand delivering a “thank you” note to the nurses and doctors who cared for him like family from the day he was born, I’ve even thought about writing a note […]

When the horrible, inevitable arrives, even 6 weeks of preparation cannot completely prepare a person for what it is actually like to lose a child. I have known people who have lost a child, I have even thought about losing a child, but the “what it is like” of losing a child is so different […]

“And the ship went out into the High Sea and passed into the West, until at last on a night of rain [he] smelled a sweet fragrance on the air and heard the sound of singing that came over the water. And then it seemed to him that as in his dream…the grey rain-curtain turned […]

I just wanted to share that Mr. Bug is doing AMAZING this week! He continues to tolerate tiny (but regular) decreases in his ventilator settings, and he is tolerating decreases in his paralytic and sedative drugs such that he is beginning to try to pull things out! He can mouth words in response, he cries […]

Just a quick update: 1. Mr. Bug’s ventilator is now initiating only 4 breaths for him, down from 16 yesterday! His blood gasses (how much oxygen and how much carbon dioxide are in his blood) are GREAT compared to even yesterday! Right now, he is initiating about 16-20 breaths per minute. This is a start. […]

Last week I took Kiki and Judah to Disneyland for a little vacation from all the stress. It felt a bit odd, leaving our baby so far away when he could die any second, for something as frivolous as entertainment. So. Glad. We. Did. Something changed in my perspective as we raced around from ride […]

5 weeks ago at this time, we were waiting for lab results to tell us what was making our baby so sick. 4 weeks ago at this time, we were hoping the drugs would kill the fungus. 3 weeks ago at this time, we were frustrated by the very slow progress. 2 weeks ago at […]

So today we had the meeting every parent only dreams about in their worst nightmares. We had the “removal of life support” conversation.  Basically, as I’ve said before, Mr. Bug has made some improvements in some places, but not even close to how much improvement he would have to make to have even a remote […]

Yesterday was a pretty telling day. For 4 weeks now, we have hoped and hoped that Mr. Bug would begin to improve, and he has made some improvement in some areas, and but he has made no improvement in others, and the gains he has made have been so tiny compared to what he would […]