Lots of small changes for little David today. I had a detailed conversation with a nurse practitioner this morning and she explained many of the things that are happening with him. Ultimately, it ended up being his heart is the trickiest thing to manage at this point. His blood pressure and heart rate start to increase as he’s weaned off an IV medication and slowly transitions to an “oral” medication. The oral medication is not an exact replacement, so it’s a tricky balancing act. However, due to this, she wants to wean him off the ventilator slowly since the lungs and heart are so closely dependent on one another. She feels like he could be weaned more aggressively from the ventilator, but that could also cause his heart to act up, so it’s better to do things very slowly to slowly ease his heart.
David is scheduled for an echo later this week to check his stent placement as well. Previous echos looked good; however, they want to ensure that it is still good. The stent they are assessing is the one that holds open his upper chambers. She said the right upper chamber has a “pace maker” for the heart, so they want to make sure that the stent is still in a good location that it is not messing with his heart beat since David’s heart rate still runs high.
She also showed me his chest x-rays. There was improvement on his x-ray today from yesterday. It’s not perfect, but shows he’s heading in the right direction, so they reduced his ventilator just a tiny amount and he’ll have another x-ray in the morning.
David also no longer has any IVs! His remaining IV in his arm was going bad and leaving a red hard mark in his arm. It was decided to move the medication that he was receiving via the IV to his PICC line and remove that IV. It is sure nice having one less thing in his body. At this point, it’s just his arterial line in his left food and his PICC line in his left leg.
They also started to fortify the milk David receives today. His milk only has so many calories, and David needs slightly more than a typical baby due to his heart condition in order to continue to grow. They don’t want to increase his food volume, and just want to increase the calorie intake, which is why they added some more calories to his milk. However, this has seemed to make David more gaseous today, which he finds very uncomfortable.
Otherwise, David got more snuggles in today. Daddy showed him the Vikings game, but David promptly fell asleep. Eli and Anna came to visit again, and we got some family photos taken of all 5 of us together, provided by On Angels Wings. We had postponed these photos several time at this point due to one of the kiddos not being adequately healthy, or David had a procedure scheduled, or the photographer having an issue. We are so thankful that David gave us all this extra time to love on him and get some photos.
He’s started wearing some clothes the last two days. I came back from lunch and he was wearing a hospital gown I got from Sisters by Heart. I think I need to pull out our newborn clothing that is packed away and see what we have that have snaps and get them washed so David can have more clothing options.
David sure looks good. So precious! Prayers continue.
It is wonderful to hear that he is losing some of his “accoutrements “, that has got to be so much easier to deal with for him and you. And more snuggles are always great 💕
It’s great to hear he has less lines and needles in his little body! I’m sure he fell asleep from all the action before the Vikings game!! :))