SURGERY?

As you all know by now by following Jacob's life, it can be a rocky road. Friday night, I felt so calm. We were home again. Jacob was on IV antibiotics, which should hopefully finally help his pneumonia. We were going to do it from home. We would have a weekend at home.
Sunday morning we noticed some blood around Jacob's needle. We realized that the needle had gotten dislocated from the medi-port, probably from Jacob's CPT vest. Not a big deal. I even had the right size needle at home, and could simply bring it in for an exchange. I packed up the car, and went up to urgent care in Broomfield.
We didn't stay long at urgent care. They have no experience with medi-ports, so we had to pack up again, and go down to the ER at Children's in Aurora. The nurse exchanged the needle, and we were ready to go home and have dinner and continue our weekend.
BUT the port didn't flush or draw blood! Two nurses tried to access him. After that surgery got involved. I am always so impressed by the care at Children's, but not last night. I am honestly horrified thinking about the sterile technique of the two surgeons taking care of Jacob. If Jacob gets a line infection, I won't be surprised. I had to over and over again remind them of the sterile technique using medi-ports! It was cruel. I think the tried 4-5 needles in Jacob's chest without any success. I finally got to see the attending surgeon, and he told me that the line most likely has a blood clot. It has happened before. You can put a bit of medicine in the line, and most of the times it clears up the clot. The surgical team again had really no clue how to do it, and exchanged needles for every attempt they put in the medicine. It was so frustrating to watch them, and the ER nurse confirmed my suspicions. Suddenly, they wanted Jacob to not eat anymore, since they were considering removing the port and placing a new one Monday morning. My instinct told me that they were rushing things. The one I trust most regarding Jacob's medi-port is a nurse practioner in his clinic, and I told them that before us making any decisions, I wanted her to access the port in the morning and get her opinion. We left the ER late at night with no results, knowing that we would return in the morning again.
Today, I have been at Children's all day long. Our preferred nurse practioner did access his port, but it still wouldn't draw any blood. After having had an x-ray done as well as a flouroscopy, we know that the port is in the right place, but clotted. We will try once more this week to unclot it with medicine, but if it doesn't work, we'll have to replace this port.
I was hoping that Jacob would never have a surgery again in his life, but this one is unfortunately not an optional "nice-to-have" thing for Jacob. When we need access, it needs to happen fast, and the medi-port is for sure the least painful option considering that it's impossible to get an IV-line or draw blood from Jacob. We're going back-and-forth to Children's this week to figure out if we can get rid of the blood clots or if surgery is part of our plan. We should know by Thursday at the latest. I expect surgery to happen Friday or Monday, if we can't get this port to work. IV antibiotics can still go in, so at least we can continue our road to recovery in terms of Jacob's pneumonia.
In times of hard decisions, I love that my husband always is on board. No questions, just a clear understanding of what needs to happen despite it not being what we want. That makes this so much easier. No energy lost or wasted. Still, we're truly hoping that Jacob won't have to go into surgery this week, since anaesthesia is always a risk for him. Keeping our hopes up.
Love, Maria.