Judah has been doing very well the last several days. His heart rates have been stable, and he is playful and happy. He continues to put on weight, and is slowly progressing with his speech and physical therapy – to help him feed properly and to watch his development. He is holding his head up on his own much better than before, and he loves playing with his little fingers and kicking his legs. The last week had been pretty calm, no major appointments, and although for a little while we thought we might head back to the hospital because of some breathing issues, for now we remain at the Children’s Home.
While last week he didn’t really have any appointments, this week is full of trips back over to the hospital to see our doctors. Packing Judah up for transport includes plenty of equipment and bags, but overall he enjoys the ride and the change of scenery. Though appointment days wear him (and us) out, our doctors continue to monitor Judah’s progress and plan and adjust the next steps.
Today Judah met with his Ear, Nose, and Throat (ENT) doctors, and they think he is doing very well with his Tracheostomy. He also got in to Pediatric Surgery to have the Gastrostomy tube (g-tube) – which goes directly into his stomach for feeding – replaced with a Mic-Key button. This button allows us to connect him to a feeding line only when needed, instead of the tube constantly protruding out. Tomorrow he will meet with his Cardiologists, who will again look at his heart.
The Cardiologists will probably tell us once more that Judah will need to go into the Cath Lab to get his pulmonary artery ballooned. This will allow more blood to make its way to Judah’s lungs, and help him to breath better and allow more oxygenated blood to flow through his body. We hope he will be able to get in for this procedure soon. The ENT doctors told us that after the cath procedure, they would like to begin testing Judah being off of the ventilator for a few minutes at a time. This is the first step in the process of getting Judah untethered from the vent and removing the trach, but it is a process we will work on slowly. Starting with just a few minutes a day, the doctors will take Judah off the vent, and place an artificial nose on his trach, to see how he does without any breathing support. If he does well for a few days/weeks, they will slowly begin increasing the amount of time per day that Judah can be disconnected.
Our little J continues to progress in his feedings as well. He currently gets almost all of his breastmilk through the g-tube, but continues to work on taking from the bottle, and just recently from the breast again. Breast feeding time with mommy is a very pleasurable time, and Judah has been making great steps in latching on and beginning to feed by mouth. We will still require speech and feeding therapy for a while, but Judah is moving in the right direction.
Overall, time keeps moving and life goes on. Every day we continue to learn about Judah, his personality, his development, and especially his care. All of the staff at the Children’s Home continue to compliment us on how well we are taking care of Judah, and how loving of a family we are and have. Our love and continued thanks for all of your love and support,