Elisa and I have fallen into a three hour rhythm. It starts about an hour before Sam's next feeding. You get a pit in your stomach. Food sounds awful. You want to close your eyes and sleep, but hate the thoughts that are screaming through your head behind your eyelids. We get into the car, and we're very quiet. We throw out affirmations, hopes, pleadings...not expecting an answer, but trying to buoy us up for whatever we're going to face. When we walk into the NICU, I always look at the board to see if Sam is still in Level 2. Then I count the number of babies on the board (they're up to 16 now). We open the door, and I often wonder what we'll see. If I hear a beep before the door is open, I swear it has to be Sam's stats. We walk over, get an update from the nurse, realize that we haven't had a relapse, and settle into feeding. My favorite moments are burping the little man, holding him, and watching him wrap his body into Elisa's. We painfully decide to leave, get him settled, and walk out. There's more oxygen in our lungs. The pit is gone (or at least, a little less pervasive). We take the time to eat, shower, take care of the kids, etc. All the while, the clock is ticking. Usually, 90 minutes later, the pit slowly returns. And the cycle begins anew.
The 11:00AM feeding always gives us a slightly bigger pit in the stomach, as more often than not, we get our biggest update of the day (either from a nurse (after consulting with the Dr.) or from the Dr. himself). Today, we chatted with the Doctor. Our Neonatologist is a squat little man that looks like he graduated about 3 weeks ago. There's a softness to him. And a definite lack of arrogance. We asked him a bunch of questions - how is he? Are we progressing? What happens if we see a relapse? What are the next steps? When can we take him home? So let's share the answers.
How is he?
Sam is doing well. We are currently going full-bore on getting him off the Nitrous Oxide. It is clear from his stats and the third echocardiogram that the Nitrous is benefitting the little man. Yesterday at the 11:00AM feeding, Sam was still sitting at 20 ppm of Nitrous Oxide. That's when the weaning began. Between now and then, Sam's ppm have dropped from 10, to 5, to 4. The last 4 (3, 2, 1, 0) are a painstakingly slow process, because this is where you want to guard against a relapse of the pulmonary hypertension.
Are we progressing?
In a word, yes. Sam has responded very well to the weaning, with a little adjustment to his oxygen levels. If you'll remember, when we started the weaning process, Sam was at 2.0 lpm and 26% oxygen. As he progressed from 15 to 10, they pushed his oxygen up a couple percentage points. His greatest leap was from 10 to 5, where he hit 34% oxygen levels. While I was worried throughout the night at this development, I'm happy to say that moving from 5 to 4, he's still holding at 34%. As I write this blog, they should be decreasing the Nitrous Oxide from 4 to 3 for the next 6 hours. If he doesn't relapse, our timetable would be 3 ppm at 12:00PM. 2 ppm at 6:00PM. 1 ppm at 12:00AM, and 0 ppm at 6:00AM tomorrow.
What happens if we see a relapse?
Every step down on the Nitrous Oxide (with Sam's toleration) means that the pulmonary hypertension is still resolved. If we see a relapse, what it is indicating is that the pulmonary hypertension isn't fully resolved yet, and further therapy (i.e. more Nitrous Oxide) is required before weaning can take place. If we do see any sort of relapse (indicated by the amount of oxygen Sam needs), we will re-up the nitrous oxide to ensure that it eradicates the pulmonary hypertension.
What are the next steps?
Most helpfully, we asked for and got a view into the path home. We are not there yet. We have a multitude of milestones that we need to hit. But we can see and understand which milestones are coming and what we (well, Sam) needs to accomplish.
- Wean fully off of the Nitrous Oxide
- The day after successful weaning, they will run an echocardiogram (D-Day #2)
- If the echo still looks good and the pulmonary hypertension is gone, we wean the oxygen
- Once he is fully off of everything, they want him to be stable for 48 hours
- If the 4 above steps have been completed, they kick us out
It tells us that he's not going home on Friday, or on the weekend. It's not perfect. But we have our 4 milestones, with the fifth being the greatest gift of all - bringing Sam home. Kind of fitting that we have 5 steps. You know, five is my lucky number and we are indeed the Fab Five.
When can we take him home?
I've done some math in my head (I know, I should leave it up to Elisa), but if we perfectly progress, that would mean that Step 1 would be complete by tomorrow. The echocardiogram would be on Friday. And we're staring at 48-hours (or two days) from there. Best case scenario is a Monday celebration. Sam still has so much to do, but the light (ever so dim) at the end of the tunnel is at least slightly illuminated.
That's all for this update. Join me at 12:21PM and wish little Sam a happy 1-week birthday. Let's all hope that his 2-week birthday can be celebrated from his home, with his brothers, mommy, and daddy by his side.
Brad
1 comment:
I have been watching your posts everyday. I went through a similiar but much less serious situation with my child. You are in my thoughts and prayers. He looks like a very strong little guy. I have no doubt this ordeal will be over soon and you will be able to take that handsome guy home! Fingers crossed for soon!
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