In the last week, Judah has had a few more ups and down, but overall he continues to grow, smile, play, and wait for a chance to get into the Cath Lab. Two weeks ago after a cardiology follow up, Judah was re-admitted to Children’s Hospital from the step down facility we had been at, The Children’s Home. He had been having an atrial flutter and some respiratory issues. After some monitoring, medication adjustments, and time, he stabilized a bit and was ready to get in to the Cath Lab. Judah was scheduled to go in for a heart catheterization almost one week ago today, on Thursday the 24th. As they took him back to the lab and got him prepared for the Cath, the doctors determined that within the last few hours Judah had spiked a temperature approaching 102F and they were unable to proceed with the catheterization. He returned to his room in the CICU to fight the fever.
Judah spent the beginning of his weekend very uncomfortable and tired as he fought the high fever. The doctors sent away cultures and samples to try to find out if it was a flu, rsv, or any other respiratory illness, but all of the tests came back negative. As the weekend went on, Judah’s fever broke and subsided, and by Sunday he quickly returned to his happy and playful self, although he had bought himself an extra week at least in the ICU.
This week he is feeling much better, and waiting for another opening in the Cath Lab, which will hopefully happen for him on Friday. His heart rates have been stable for a few days, and he has been very active, singing and dancing, rolling onto his sides, playing with his toys and kicking his feet as if he were crawling. He continues working with mommy on feeding from the breast and the bottle, and he spends more and more time each day holding his head up on his own. He is gaining weight and up over 11.5 lbs. His face is approximately 80% cheeks, and they are extremely pinchable.
Over the last week, mommy and daddy continue to fight for appropriate assistance from the insurance company, and we hope to have a final resolution one way or the other soon. If we are not approved for enough nursing hours, we will have to find another option, but we do not want this to be the thing that keeps us from being able to bring our son home. Since Judah has been doing so well, our insurance company keeps trying to send us back to the Children’s Home to wait since we are still appealing the home nursing decision, but since Judah is scheduled to get in to the Cath Lab, we and our doctors feel it does not make sense to move him around so much. We are confident that in time the insurance company will listen to us and our doctors telling them about Judah’s needs, but until that happens we will continue to fight, and continue to be uncertain about where they will try to send us.
However, as we have always maintained, wherever Judah is, we will be too, and whatever is best for him, will be best for us. We will get through this battle, and be thankful that it is not another battle Judah has to go through, this one is all on mommy and daddy. As Judah remains smiley and happy, so do we. We continue to watch him grow, and know that he will continue to get the love and care he needs, hopefully at home sometime in the near future. For now, we sit back, play, continue life in the CICU, and wait to get back into that Cath Lab.