Tuesday 1/22

It has been an interesting, and at times crazy week as we begin our preparations for finally bringing Judah home. A week filled with coordinating nursing care while we continue to work out our differences of opinion in how many in-home nursing hours our insurance company feels we should be getting versus what we and our doctors feel is appropriate, as well as buying and building furniture and supplies for Judah to make our home as well stocked as the medical facilities we have been living in, and also in dealing with various local government offices trying to get secondary Medical Assistance set up. During our mad dash to get everything completed, Judah decided to have plans other than going home, and last week on Wednesday we were sent back to the CICU at Children’s Hospital.

Judah was re-admitted to the hospital because during his Cardiology checkup on Wednesday, the doctors noted that he is back in his atrial flutter, essentially an arrhythmia or irregular heart rhythm, and his heart rates have begun jumping around a lot again. Over the last few days they have been trying to fix it with some medicines and a procedure called a cardioversion, but have not really made any progress. Little J also continues to have some respiratory issues, but the doctors still feel that this could be related to his heart function, and isn’t necessarily a lung or breathing problem. During an echocardiogram at his appointment on Wednesday, the doctors again noted how small and narrow Judah’s pulmonary arteries are, and because of this his body is not pumping enough fresh oxygen into the blood. He is still on schedule to go back into the Cath Lab sometime hopefully in the next few days to balloon his pulmonary artery, which should allow better blood and oxygen flow.

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Despite all of the irregular heart rates and rhythms, Judah generally continues to be his happy, smiling, and playful self. He is once again reunited with all of his girlfriends at the hospital. The hospital itself is bursting at the seams with patients, as it seems the flu has hit especially hard this year, so every department is overflowing and very busy. Additionally they have added restrictions on visitors for anyone coming, and many of the rooms are in isolation so that the flu or other sickness does not spread.

At this point, we were so close to being released from the Children’s Home, that when Judah heart rate stabilizes and he gets and recovers from his Cath procedure, we should be released directly to our house from the Hospital instead of having to go back to the Children’s Home. While coming home is something that we have been waiting for and dreaming about for over 4 months, it does not come without a little anxiety. As mentioned, we have gotten everything together in his room, organized all of his medical supplies, created shelving and closet space for everything he will need, as well as bought and built furniture and stands and dressers for him. His room is as ready as it will ever be, all that is waiting now is a little baby J to make the room complete.

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We anticipate that this will be soon, but wait for the doctors to complete the next round of procedures, get Judah’s heart under control for now, and tell us when that will happen. As always, your love and support keeps us going, and as any new information comes out, we will let you know.

J-N-J

One thought on “Tuesday 1/22

  1. Sorry to hear that you are back in the hospital. Hope everything turns out fine and you are able to go home real soon. Be strong little man…..

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