Ramona had her first follow-up cardiology appointment today. It went well. She pretty much slept through the whole thing and did sleep through the entire echocardiogram. I asked all my questions and was satisfied with the answers.

Here’s what we discussed (for those of you who are following her medical progress closely):

1. What is the plan for weaning her methadone and ativan? The current plan is to slowly wean the ativan until June, then to start weaning the methadone. Her methadone dose will remain the same until then.

2. Can we try to wean her oxygen? No. Oxygen is a potent vasodilator (it dilates your arteries) and she is probably getting a significant benefit even from the small dose of 1 liter that she is on. There will be no attempt in the near future to wean her off of the oxygen.

3. When can she have her synagis shot (it’s a very expensive immunization against a serious respiaratory illness called RSV and requires pre-authorization from the insurance company)? She is cleared to have that at any time, probably next week.

4. Can we relax our visiting moratorium and have a small get-together for Simon’s first birthday? Yes. Although it’s very important to limit Ramona’s exposure to people that have been ill, it will be okay to participate in important family events, as long as anyone who’s sick or has sick kids stays home.

5. What did you see on the echocardiogram? There still seems to be flow to her branching pulmonary arteries (BPA’s). There is significant backflow through her right ventrical patch but this is expected because of the size of her BPA’s.

6. What is her long and short-term prognosis now? Her long-term prognosis is unchanged and is still a “toss-up”. Her short-term prognosis is looking encouraging. We will be watching for any sudden desaturations from which she doesn’t recover or any persistant downward trend in her saturations. Barring anything like that, and provided she continues to grow, they expect to do a cathederization procedure to reassess her BPA’s around her first birthday.

7. When is our next cariodlogy follow-up? Two months.

I’m paraphrasing of course. But I was excited to hear the cardiologist discussing her first birthday. I know it’s not a guarantee, but that’s the farthest in the future I’ve heard a doctor make semi-solid plans for her. And I’m delighted to get the go-ahead for Simon’s birthday. I’ve really been struggling with balancing the medical advice doctors have for her care with more common sense issues of how much isolation, stress and sleeplessness a family and marriage can bear. So I’m glad to hear that on this point there’s no dispute.

Please pray with us that Ramona will be able to celebrate her first birthday and beyond. Please pray that we will be able to discern if there is a difference between what’s best for Ramona medically and what’s best for our family as a whole. Please pray that we will be able to find the childcare help that we need. Please pray for our friends and family who feel powerless right now to help and for those who are deeply worried about us. Pray for our marriage, that it would stay strong. And pray for our children, that they would know everyday how much we love them, even if we are too tired sometimes to show it.

Jane.

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