Saturday 11/3

After a pretty eventful week, full of appointments, meetings, and advances in his feedings, Judah had another minor hiccup in the road yesterday. First, to fill you in on the week. After a very good appointment with the cardiologists on Monday, and passing his swallow study with flying colors on Tuesday, Wednesday we met with our team of doctors and therapists to discuss our progress, and the road ahead.

Judah is progressing very well with his feeding, which was his last major hurdle since the surgery. His therapists feel he is doing very well, and with the successful swallow test we have been able to not only remove the rice cereal that was being used to thicken up his formula feedings so he does not aspirate, but we’re increasing the number of times per day Judah has his “therapy” sessions where he is first eating from the bottle before getting the remainder via his feeding tube. We’ve gone from 3 feedings a day up to 4, with plans of increasing that again to 5 feedings a day from the bottle early next week. We have also been able to increase the volume of food he takes with each feeding, which in turn is helping him to continue gaining weight.

We asked the doctors and therapists where he will need to be and what kind of a timeframe we will be looking at before we can finally go home, and the answer was somewhat fuzzy still. It certainly all depends on how Judah continues to progress, and the doctor will not send us home while they are still making changes to his medicines or therapies. The real goal is to get all or at least the majority of his feedings by the bottle, and little or nothing through the tube. Judging by Judah’s progress so far, and the attitude of the doctors, we estimate it will probably be another 3-4 weeks, but it could be longer or shorter depending on his continued progress.

A minor bump in the road yesterday unfortunately set us on a path back to Children’s Hospital. Friday morning, Judah began having some irregular heart beats, and low oxygen saturation levels, and by that evening just to be on the safe side, the Institute felt it would be better for us to work directly with our cardiologists, and sent us temporarily back to the hospital where we are being monitored by many of our old nurses down in the Cardiac Intensive Care Unit. The doctors are still unsure what is causing the irregularities, but are confident that they can figure out what the problem is, and potentially adjust some of his medications to get him back in the target zone. Judah was scheduled for a heart catheterization in a few weeks to fix some issues with his Pulmonary Artery, but instead there is a chance we will just stay in the ICU until they can get us in there ahead of schedule. As more tests are run and details are known, we will keep everyone updated. Either way, this is just a minor hiccup, and even in the ICU we continue with Judah’s therapy sessions and feedings as he continues to strengthen and eat.

As always, we appreciate that you will all keep us in your thoughts and prayers. All our love,
J-N-J

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