We're getting used to hearing on rounds, "No changes today." As we've written before, we've reached the point where progress will be incremental. Slow and steady wins the race, and we've seen already that too much change too rapidly sometimes means steps backwards. This is why doctors unemotionally control Ronen's care, not his parents, and we are blessed to have very confident and capable doctors. We have benefited from the fact that Children's National is a teaching hospital, so we watch and participate as residents, fellows, attending physicians, nutritionists, pharmacists, a social worker, a case coordinator, and nurses all participate in our son's care, all willing to explain and recap for us in layman's terms.
Ronen's breathing rate has been fairly high, so the doctors have not wanted to change any of his settings. Today, a small change. His NIPPV (ventilator) settings have been at 22 PIP (peak inspiratory pressure) and 9 PEEP (positive-end expiratory pressure). Today, they lowered the PIP to 20. We're told that at a PIP in the high-teens, and a PEEP about 8, they'll be able to transition him to CPAP, which will be delivering pressure to his lungs but not additional forced breaths, which the NIPPV does. The neonatologist told us that they're hoping to wean the breathing support as much as possible over the weekend. Feeling grateful that at least we're no longer stuck.
Steps forward for us, emotionally also. We can now pick him up ourselves without assistance. Our nurse a few days ago taught us how to disconnect and reconnect his breathing tube so we can take him out of the crib. His ledes and wires extend far enough for us to sit with the baby in a rocking chair, and he loves to snuggle. He seems to love certain positions more than others, and snuggles differently with Hinda than with Bob, which tell us that he knows his parents and is bonding differently with each of us.
Ronen also seems to have discriminating taste for music, and his parents are each teaching him to love different genres. He settles in when I (Hinda) play him a cappella and choral music, particularly pieces by Salamone Rossi and other songs sung by Zamir Chorale of Boston. He also likes some Broadway music; for some reason gets annoyed every time George Hearn sings "I Am What I Am" from La Cage Aux Folles. At least he does like other Jerry Herman compositions, so it's not a composer grudge. He likes other pieces by Rodgers & Hammerstein, Gershwin, and Maury Yeston. Ronen also seems to like country music when Bob plays it for him, and happily listens to Disney selections, especially the Lion King soundtrack, which is his siblings' favorite.
At this point, I think we have people praying for Ronen on four continents. I prefer the text of the mi-shebeirach (prayer for the sick) that includes a shout-out to the people engaged in his care. Ronen has quite a staff here at the hospital, and we are eternally grateful for their loving attention both for him and us.
Wishing everyone a Shabbat Shalom. May it be restful and productive for all of us.
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