July 30, 2009 - Jonah's 11th Day

July 30, 2009

For me, this was one of my first especially challenging days. This was the day I was faced with a tough reality. I was faced with the straightforward facts that Jonah may not survive. As you see by reading this, it was an up and down day all-around.

“A big step forward and small steps back. It's natural through-out this process.
Jonah passed his trial run off support yesterday with flying colors. Dr. Michi came in and removed his life support yesterday at 3:00 PM. JONAH IS DOING AMAZING. That's right - AMAZING.”

Jonah had been doing so well with everything he endured, that setbacks were not normal for us. We were thrown some curves, some things were in the air and our lives were very unstable. The words in CVICU that are often repeated - “two steps forward, one step back.” It’s that one step back that can kill your spirit sometimes, and it was no different for me on this day.

“However, a small step back. His hands and feet are turning colors. We had noticed them turning colors the past few days. The nurses kept telling us it was one of the medicines he was on - it was taking blood from his extremities and constricting the blood vessels. Fine. Today, things are much worse. Dr. Michi is in with him now. He's bringing him down off the medicine to see if that's what is causing it. It could also be clots from taking him off the support but he said he has a plan for that, too. So, through this small step back, I don't have the heart to write today.”

You don’t know the agony you feel walking into your son’s hospital room and seeing his feet and hands purple. Not a little blue….dark purple…nearly black. It was the precursor that you never want to see. It was the tint of all things dying. And it was killing me, too.

“The power of prayer. Jonah's hands and feet are returning to their normal color. I've had a rough day but not as rough as Jonah. But fortunately for him, he won't remember it. I've decided that I can't handle the "bad" days. The doctors have prepared me for this but today, I lost it. After crying for an hour and completely blaming one doctor for Jonah's setback, I was sent to counseling today.”

My own strength was tested this day and I failed wretchedly. I can recall the sense of complete rage in my mind. I felt like someone had failed Jonah.

“The counselor is now following me around like I'm deranged and could go postal at any moment. I was able to vent and work through some things that I was keeping bottled up. But I did feel like Jonah had been doing so well with his team of doctors and last night, he had a new doctor, and the bottom fell out. I blamed her outright, but sometimes, I think we need someone to blame.”

I am his mother. I was the one person to stand up for him, to defend him and to protect him. Once he was stable and his extremities began to recuperate, I was able to get out the fury that had bottled up in me that day. I wasn’t sure if this was a sign of strength or weakness but I felt as if we had failed Jonah, too. I was frightened. I was fearful that in trying to mend Jonah, we were making things worse. I’ve always emphasized quality of life over quantity of life. Did I want Jonah with no hands or feet? Was that any way for a child to be raised? Was I being selfish?

“The team up here is very forgiving of mommy's. We're a tough crowd. We are allowed to feel what we need to feel. But on to the little man, he's cruising right along again. He's back on ECMO - something we wanted to avoid at all costs. But since he's been on it, his kidney's have been functioning again (he's peeing!) and the color is returning to his extremities. Dr. Michi is going to start performing more tests on him tomorrow to see exactly what is going on in Jonah's body that he won't stabilize himself. His tests on his heart have all been good.”

We recovered from our grueling day and a plan was put into place to look into Jonah’s body deeper and see what was causing the problem. Jonah’s thumb on his right hand never recovered and we were told it would have to be amputated in due course. I kissed Jonah, and smiled, “You’ll just have to be left-handed.” And my evening went on.

“The doctors have not given up hope that they can fix Jonah. And while I did get discouraged today, and was afraid I was losing my faith, I am back on track now.”

My heart skips a beat and my breath is hard to come by when I think of these days of trials and tribulations of the worst kind. As a family, we faced so much in a short amount of time. Every day was borrowed. Little did we know that we had less than a week left with our sweet baby.