Tuesday, February 11, 2014

One Rough Day!

When we left he house this morning, our plan was to swing by the oncology clinic for a quick port access/flush and then head somewhere for a fun lunch before going back to the hospital to meet with anesthesia. Unfortunately the day did not work out as planned and we spent the ENTIRE day at the hospital.
When we arrived to clinic around 10 it was business as usual. They got Braydens vital signs and I noted that his heart rate was a little high but didn't think too much about it because all of his other numbers looked good. After accessing his port it would not draw back blood, so they put some medicine in it to help. After letting that medicine sit in the line for the maximum amount of time it was decided to pull the needle out and reaccess the port to see if that would help. Unfortunately it didn't help and it was decided Brayden needed a "line study" in interventional radiology, but it was almost 1 so we needed to head to our appointment with anesthesia. We left with an accessed Brayden and strict instructions to come back to the clinic after our anesthesia appointment.
When we arrived in the next clinic we didn't wait too long and the nurse was kind enough to get Brayden some goldfish crackers and juice as he hadn't had lunch yet. As he drank his juice and at his crackers I talked with anesthesia and answered "no" to all of their questions. Anesthesia said he looked great, but that on paper he was a "huge risk" so he will only be allowed to have procedures at the downtown location. They explained that south doesn't have an ICU so their concern is what would happen if he has complications. In my mind I wondered what would happen if a "healthy child" had complications at south but I kept my mouth shut :) As I gathered up our things to go back to oncology I wondered why they had us come in if the answer was "no" based on what is on paper. I felt like everyone's time was wasted during this appointment.
I called the oncology clinic to see if we had time for lunch before the line study because it was after 2, and I was sure Brayden was hungry for real food and needed a break. They said the study would be around three so we went by the cafeteria and had lunch before going back to oncology. When we got back, we settled back in and then the phone rang saying interventional radiology was ready for him. We headed back through security to the hospital side and got checked into radiology. They came and got us pretty quickly and did his study which consisted of injecting dye into his port and taking pictures of where the dye goes. Bret was the lucky dad who had to lay Brayden on the table to get tied down, and then they sent us to the hallway.
It broke my heart because I could hear him crying "momma daddy" through the door. A few minutes later they came and got us to show us the pictures. There is a "fibrin sheeth" which is basically a huge blood clot at the end of the line, and the radiologist said the clot buster didn't work because of the way the clot is positioned, and that we basically had three options: Exchange the port for a new one, try and strip the clot away, or simply take it out, but that decision would be up to our oncologist.
We headed back to oncology to see what they wanted to do. As Brayden and I settled back into that familiar recliner, I thought he felt warm so the nurse took his temperature and he had in fact spiked a temperature on us. At that moment it was decided that Brayden needed to be poked for labs and blood cultures to be safe, and Brayden was less than impressed!
After getting the labs, an IV antibiotic was ordered and as we waited for it to come up from pharmacy we talked to Dr G about the port. At this point, Brayden does not really need the port, and since it will not draw back blood it's useless to us. That means that it is simply an infection risk, so it will be removed in the coming weeks under general anesthesia. I am wondering if we could take the port out and get Brayden's teeth fixed at the same time, but I am guessing that will not be possible.
I am disappointed that the port is misbehaving, but I am also sort of relieved it is coming out because that means that we won't have to worry every time he gets a fever. He will be able to swim in freshwater, and take Tylenol again which will be nice!
To say that Brayden had a rough day would not be accurate. That poor kid was stuck 3 times, and tied down twice. Days like this are tough because it is so hard to watch him cry because they are hurting him. It just makes you feel so helpless. Brayden is certainly not himself this evening as he refused to eat, take his medicine, or drink his milk. I am hoping my little man will be back tomorrow, although we do have a dentist appointment back at the CMH clinic in the afternoon.......

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