Monday 1/7

A week into the new year, and Judah continues to do very well. Last week was a busy one for all of us, aside from the holiday and celebrating Daddy’s birthday, Judah had a number of appointments and follow ups with his team of doctors. Early in the week he met with his cardiologists, who said he is progressing well, but they see some things that they would like to keep an eye on. He will have to head back to the catheterization lab for some additional ballooning in his pulmonary artery. This is a common need in patients with Truncus Arteriosus, as they frequently have narrower than normal Pulmonary arteries, so to make sure blood is flowing to his lungs properly he will need regularly scheduled and routine procedures.

He also had an appointment with the throat specialist, during which he was taken to the operating room at Children’s Hospital and they put a camera into his throat to see how he is healing. They did some ballooning in his throat as well to make sure that everything is healing the proper way after his trach surgery, and to check on the scarring and irritation. The doctor told us that everything looks exactly the way he wanted it to, and Judah is healing well and properly. The doctor said he saw nothing concerning in there, and set a follow up appointment in a couple of months. This week will be (hopefully) mostly quiet as Judah gets to relax before he has another series of appointments next week, with the ENT (ear, nose, and throat) clinic, to take a look at his lungs and his breathing, and again with his cardiologists to re-run a few tests.

After the trach scope on friday, the doctors wanted to keep him overnight at the hospital for observation and monitoring, and we again got to spend a night in the CICU with all of Judah’s old girlfriends. It had been almost 3 weeks since we left the CICU, and all of the nurses were eager to come visit Judah and see how much he had grown. They each took turns pinching his cheeks and telling us how great he looks and how well he had been growing. At first they were scared to see us, but when we told them we were only there for the night, they were relieved and stayed to play with Judah for as long as they could.

We are progressing well at the Children’s Home, we have completed just about all of the things we were supposed to in order to prove to the staff that we can take care of Judah and keep up with his needs. We have been given an estimated date of when we should be discharged home, but out of superstition we will not be telling Judah or talking much about that date until it comes and we are finally home. However, we can say that it is expected within the next few weeks.

One of the main things remaining before we can be sent home is to get through the rest of Judah’s upcoming appointments, and to get everything settled with our insurance company. Our insurance company has for the most part been very helpful, but we have been having some issues with them when it comes to determining and approving us for home nursing hours. Since Judah is hooked up to ventilation and breathing support, he requires around the clock care, and someone has to be awake and watching him 24 hours a day. This means that when we get home, we will have a home nurse come and help us for a number of hours per day. Our major issue here is the number of hours our insurance company has approved us for is simply not enough to give Judah the care and attention he needs, in addition to daddy being away from the house for work and the additional assistance Judah will need when he has to go in for appointments. We will continue to appeal their decision and seek out other solutions, but we hope this can be resolved soon so we can finally bring our son home.

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We continue to do well, and as always appreciate you all coming and reading our updates and news. We hope to soon be able to give you updates from our own home, and fill them only with news of how well Judah continues to progress and develop. At his weighing today Judah has finally surpassed 11lbs, and he continues to do well with his feedings, with play time, and his overall growth.

One thought on “Monday 1/7

  1. I am so happy to hear that you all continue to move toward your goal of going home! I will pray that you will be able to come to an agreement with the insurance company for the needed home nursing hours. How wonderful that first day home will be. You are truly an amazing family and well-deserving of the opportunity to be as normal a family as possible. Best wishes!

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