November 14, 2023

David has been very sleepy and calm today – they said he slept really well over night too. He seems to have finally overcome his withdrawal symptoms and is now a happy, sleepy baby. He’s completely off of his milrinone which was administered through his IV and switched over to captopril which is an oral medication. It was mentioned that captopril would be something he’d continue to get at home, so it sounds like that will be a long term medication. He also switched from the CPAP to high flow air support. David will be weaned off his lipids tonight, and his fortified feeds have been increased to his goal of 26 kcals. He did lose a little weight overnight, so we’re hoping he starts packing on the pounds now that he’ll be at his nutrition goal. 

I did inquire about the echo results from yesterday, and am happy to report that the images were no different than previous echos David has had. This means his stent is still in a great position, and has not moved to a spot that would affect his heart rate.

I also had an odd first today – David decided he needed to poop mid-diaper change. That has never happened to me before. Luckily the nurse and Adam were there so we were all able to get that cleaned up quickly. His nurse has noticed that whenever she mentions something, all of a sudden he’ll do it a short while later. I think this time she asked him if he had a surprise waiting for her… I don’t think it was quite the surprise she had in mind. 

David’s comprehensive MRI is currently scheduled for tomorrow morning. They are trying to make sure that he’s in a good spot with his breathing before then because he will likely need to be re-intubated for that procedure. This is because he will need to hold still for a very long time. The less support he needs prior to the intubation will help him get that breathing tube removed more easily afterwards. I was warned, that he could take a slight step back and may not be able to come off it right away. The current hope though is that the breathing tube will be able to come out right away out after the MRI. 

The doctor this morning voiced the words that Adam and I have been thinking – that David “is doing remarkably well.” He was hesitant to say it since he didn’t want to jinx it. However, he went on to say that David’s hospital stay so far has looked completely different than anyone imagined it would look before he was born. Everyone just can’t believe how well he’s done so far. David has continued to defy the odds stacked against him, for which we are truly grateful.

This leads me to what are the next steps and phases? Adam and I posed these questions a week ago, but after some of the more scary events of last week, hesitated to post them. Now that we are back in a better spot, this is what we know at the moment. Short term, our goals are to get David weaned off ventilator support, and then work on oral feeds. Once he is in a good spot with that and can also take his medications orally, he is looking at discharge. We are hopeful to have him home for Christmas – that would be a dream come true and something that we never thought possible (especially since back in June we were told plan on staying for 4-6 months, likely closer to 6 months… and that was before we knew about his nutmeg lung). 

Long term, David has gone on an unconventional route for his diagnosis. This has been fine because he has rocked it so far. Most children with HLHS have a surgery called the Norwood within their first few days or first week of life, and then another surgery called the Glenn around 4-6 months of age. Instead of the Norwood, David had stents placed in his heart and bands placed around his pulmonary arteries. So, his next surgery is called a comprehensive surgery where they will essentially combine the Norwood and Glenn together. The less times David’s chest needs to be opened, the better he will be. This will also be around 4-6 months (it could be earlier or later depending on what his body is telling us). We are feeling very hopeful that we’ll be able to go home for some time before that surgery and that everything will go well. We don’t know what the future holds for David and are still well aware of his nutmeg lung diagnosis (and the mortality rate that accompanies it), but for now, we have hope which is all we have ever asked for.