We just got back Sunday night from a week long family vacation to the Outer Banks.This is the annual Kauflin family vacation that we have been going to as long as we have been married, and for way longer than that for the Kauflins. We got to Corolla NC right after hurricane Earl swept through, to the most perfect weather we have ever had. Everyday was a perfect beach day, which our kids all loved. I will post about the beach soon.
Just wanted to give you all an update on what has been happening with Jack since we have been home from the beach. The day after we came home, Monday, I took him in for a scheduled spinal tap and the nurse and surgeon both agree that his "Tubie" (central line) has an infection, as well as serious cold. As of Monday morning, he did not have a fever and the entry site into his chest looked a little better than it had previously (while on vacation it had begun to get red, swollen and a little pus was coming out). We were able to enjoy the last days of vacation without fever, and kept putting topical antibiotics on his tube, which seemed to help greatly. Although, both the surgeon and the nurse agreed that it looked like the tube had come down and out a little more, and would need to be replaced sooner than later, they did not give me clarity as to the when all of that would be happening.
Since he did have an infection, they would not use his line to give him any more meds, or anesthesia for his spinal tap, but used the gas instead, which freaked him out a little bit. They also had to draw several viles of blood from his ankle, which cause him a good bit of pain during the day. His cold symptoms worsened as the day progressed, and he began having breathing difficulty into the evening. We gave him a nebulizer treatment at home, and have been watching that closely.
Around 5:30 Monday evening, he developed a fever, which went away on its own after half an hour, but by 8:30 his fever was back. It has been quite clear all day that he is not feeling well, he hadn't eaten anything all day, and had been crying and generally upset all day. That evening, yellow pus started coming out of the entry site on his tube/chest again (which also occurred on the last few days we were at the beach). We called the Oncologist at Children's and they told us to come on in to the ER. So Jordan took him to the ER at Shady Grove. Praise the Lord he did not need to be admitted, and was just there to get IV antibiotics. Jordan and Jack got home at 3 am and both collapsed into bed.
Today, Jack had an appointment to get more chemo, which was postponed until Friday, due to the fact that we do not know yet if the infection has migrated up into his tube in his body. He was given a second dose of IV antibiotics, but today he was able to get it in his tube and not in his arm. He will also be on antibiotics for the next 10 days. It looks like he will get a port put in, but if the line is not infected, it will be in two weeks. Not sure exactly what will happen if it is infected. I guess we will cross that road when we get to it.
Little buddy is sleeping now, and Dylan and Tyler are in the capable hands of my mom. It has been a long two days at the clinic for me and the boy. He is such a trooper though, and I could not be more grateful that he is already responding to the antibiotics. The infection already seems to be looking better. SO thank you for your prayers. We are so grateful.
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