Saturday, February 13, 2016


The medi-port doesn't leave my mind. We need to make some larger decisions, and I am not sure what the right answer is. I do know Jacob needs to have good access to IV fluids and IV medications right now. I got to see first hand yesterday what it means to not have good access. Jacob had a dangerously low glucose of 31 after having been off his fluids for 2 hours (which Metabolics had said would be fine), and the line clogged when the nurse tried to give him a bolus of dextrose to get his sugar level up. An RRT (Rapid Response Team) was called on Jacob, and the PICU team rushed up to assess Jacob. I call RRT, Children's own 911. It is never good news when an RRT is called on Jacob. Luckily, with orange juice put into his tummy (despite gut rest), Jacob responded and his sugar came up.

We repeated the line study yesterday, and we do know the port is intact. We also know the port isn't drawing well, and it clogs easily. We know Jacob has lots of swelling due to the port being infiltrated on Thursday and overall edema from being sick with pancreatitis. In fact, this last needle could only be placed with a camera showing where the port was located. The nurse would never have been able to access him by simply feeling the edges of the port. So, if the current needle get dislocated or it's time for a needle change, we don't know how easy the port could be accessed again - or at all. We also know this port is old. 7 years this port has kept our Jacob alive by giving him necessary IV fluids and necessary IV antibiotics, steroids and medications when he has needed them. Typically a port lasts 1-3 years before it needs to get replaced.

So, why is this decision so hard? Why don't we just jump to surgery? Everyone gets very nervous to put Jacob under anesthesia. It's definitely considered a life-threatening event for him. Will he survive? I have tears in my eyes just thinking about it. But I also do know that Jacob can't live without a port, especially not now when he has pancreatitis and needs to be on gut rest. He needs to get his fluids and medications through a line.

With Jacob having the most terrible veins, our options are limited as well. A regular IV was put in Jacob on Thursday, and it lasted less than 24 hours before it came out. He got a second one put in yesterday, but it can stop working today. Three years ago, we were told to never put a PICC line in Jacob again. It only lasted 48 hours before it came out. We could have the PICU put a central line in Jacob, but it also entails risks, and it's a temporary solution. A functioning port is the only long-term solution.

I very seldom use Dr. E's private cell phone, but yesterday I did. It was 5 pm in the hospital, and I was afraid if I would go through the regular channels I would miss her. Within 5 minutes, she was up in Jacob's room. She feels we should try to hang on to the temporary IV line and his existing port over the weekend. We should plan for a new medi-port with Jacob's anesthesiologist who knows him next week. If we lose access this weekend, an emergency medi-port surgery could be done.

Last night, I was completely exhausted from having lost a complete night of sleep and being in an emergency state with Jacob for over 48 hours. I realized I hadn't sat down all day yesterday before I finally sat down in the car on the way home at night. I slept a little better at home, but it wasn't perfect sleep. My brain kept reminding me of our reality.

From the abdomen ultrasound, we got some good news. The pancreatitis is not due to some constructional issues/errors in his abdomen. The pancreatitis is most likely viral. The bad thing is that when you have had one pancreatitis, they often happen again...GI is willing to slowly get Jacob off gut rest, and start feeds at a super slow rate some time over the weekend, if his lipase are starting to come down.

So, we're going in to this weekend hoping for clarity and the right decision for our boy. I'm still hearing this little voice in my head "what if his existing port could give him some more time when the swelling goes down?" And then another voice says "or will it infiltrate again?" "will we be in an emergency situation with no access"? We saw first hand yesterday that Jacob started crashing after two hours without fluids when he's sick.

Tomorrow, Joakim, Sarah and I were going to go on vacation. We have this really fancy condo up in Breckenridge we traded for our time share. We had nurses lined up around the clock to start tomorrow evening. We were excited to get some down time and skiing in this winter. It's too late to get any money back or get it rented out. It breaks my heart to have to disappoint Sarah. We're hoping maybe somehow we can have one of us make it up there with her some time this week, but right now all schedules are up in the air.

Once again, we're amazed with everyone rallying for Jacob and us. We feel the support always. You all keep us going.

Much love, Maria.

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