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9/6/19 - Day 17, A Realistic Update

We finally had a sit-down with one of Ronen's doctors today, got many of our questions answered. Even though we see the doctors every day during rounds, and we can ask them questions whenever, it was helpful to have a scheduled and focused time to get a real picture of where we are with Ronen's care.


Right now, he's dealing with lung development and withdrawal from morphine. He went from a continuous morphine drip to an "as needed" dosage, but the doctors think that based on his behavior, mood, heart rate, and other symptoms that he's getting hit with pretty bad withdrawal, and so they're putting him back on morphine every 6 hours and weaning him more slowly. Since he's no longer on IV nutrition, they're taking out his PICC line, which is in his leg, today or tomorrow. One less "pipe"! We are also hopeful that we may be able to do a bris in the hospital next week.


In terms of long-term, the doctor gave us the "Best Case" scenario and the "Worst Case," though she told us she thinks we're not on the "Worst Case" track. I'm linking basic info below so that you know what these terms mean. If you click, you'll know about as much as I know.


Best case, we're still looking at a minimum of 2 more months in the hospital, and he'll go home with no additional supports. (I'll admit to finding this timeline shocking and overwhelming, and it'll certainly be a difficult upcoming holy day season with that in mind.) He's currently on NIPPV support (a step before CPAP - I was wrong before, for those following along at home), and will need to ultimately transition to CPAP, and then to Vapotherm. He's got about 6 step-downs before he doesn't need any respiratory support, and each step-down could take a week at minimum. And, there is a possibility that he comes home with some kind of oxygen. He also ultimately will have to be able to eat from a bottle or breastfeed effectively before he can be discharged, and he'll have support from a speech therapist as he makes this transition. He'll also start with some physical therapy next week to ensure that he will meet his physical milestones even as he is confined to his crib, and the PT will teach us how to do the exercises with him as well.


Worst case, kids with CDH need a tracheostomy, and there are about 9 months in the hospital, with about 3 months in the NICU and another 6 in a long-term care facility. If this is what we need to do, we'll know in about 2 months based on Ronen's status, but the doctor seemed to think that since he is already extubated (which apparently children with CDH can't always be), he's probably not in this kind of situation. I did appreciate her candor and her providing us with this information so that, if we get there, we're not surprised. If I've learned anything from this process, it's that we can't expect anything one way or the other.


As we enter Shabbat, thank you for your thoughts and prayers. We are certainly praying for the best.

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