A STRESSFUL DAY

There are times when I think back about stressful moments with Jacob, and I seriously don't know how I endured it. I think today is going to be added to that list.

Jacob has confirmed pancreatitis. Jacob has an ileus, which is common with pancreatitis. GI tells me that I should not worry about bowel obstruction. They don't see anything indicating it right now. They are doing a abdomen ultrasound to get a better idea of his pancreatitis. That makes me feel better. They are also going to monitor his liver once again. He's also pooping again, which is a good sign.

Jacob has lots of edema. He looks like a little sumo wrestler, just a little cuter. When we do his vest treatment, his cheeks are shaking. For Jacob, it means his body isn't absorbing its fluids correctly, and it's going into other body parts like his face, arms, hands, legs and feet. This is not good for so many reasons. The attending didn't want to correct it with a medication that makes him pee out the extra fluids. She wanted to "wait and see". We have had her a few years ago, and it was a disaster stay due to her "wait and see" attitude. When I got in here today, I immediately had to escalate for getting the edema off Jacob. I have seen the fluids going into his lungs and impacting his breathing, which then leads to a completely different hospital stay - most likely not on the floor.

In the middle of trying to get his fluids sorted out, we realize that his medi-port was leaking. His whole chest and shoulder were filled with fluids that should have gone into his line and into his blood. Did the needle get dislocated or did the actual medi-port break? The medi-port is Jacob's life line. We haven't been able to get an IV into Jacob's veins since 2008. That is the whole reason he got a medi-port in 2009. It is an old port, but man has it been working great. We knew there would be a day it wouldn't work any longer, but I just didn't foresee today being the day.

To find out if the port is working or not, you need a "line study". I was told by surgery it couldn't happen today, since it was after 5 pm and surgery only does "life-threatening procedures" after 5 pm. I wasn't comfortable with that answer knowing that Jacob can't be without fluids due to his Mitochondrial disease. They were able to place an IV, but we all knew it might not last overnight. It was definitely a temporary solution.

To get on surgery's list after 5 pm, you need the attending of the floor and the attending of radiology to make a decision. It was decided Jacob needed the line study tonight. I was so relieved, and happy his team advocated for him. Even if we would receive bad news, I rather wanted to know than not know.

The minute we entered the room, I could feel the coldness from the radiologist. She wasn't happy to know that we didn't know if the needle was in the right spot or not. She was on a time schedule, and this better happen quickly. She could quickly see that the needle wasn't in the right place, which we knew. She couldn't see the port on the film. She wanted the nurse to re-access Jacob right there on the table - as long as the nurse could do it within 5 minutes. I felt the poor nurse was forced to access Jacob without truly taking the time to feel the edges of the port. Instead she was blindly shooting into his chest. With that approach, you are not going to be able to access Jacob. Period. As soon as the radiologist heard that the nurse wasn't able to access Jacob. She shook her shoulders, said there was nothing more she could do, and left the room. Oh man, this was so not patient focused care. I was just thinking she didn't do it to the right family...

As I have had a chance to calm down, stress eating pop corn and crackers all afternoon and evening long, thinking a glass of wine sounds really good, I do believe we have a plan for the night. The charge nurse is going to give it another try to access him before she leaves in the morning. I love how comfortable she is with medi-ports. If she can't get him, they will order another line study for the early part of tomorrow - just in case - we need to schedule a medi-port surgery for tomorrow. It makes me sick to even write that sentence. I just don't even want to think about putting Jacob under anesthesia tomorrow, and what that could entail for him.

Jacob and I are going to try to get some rest. Before 7 am, I am going to know if we have functioning medi-port again or not or if I need to find my inner strength for another day of medi-port chaos.

Send positive thoughts and prayers Jacob's way. He truly needs them tonight.

And just to end tonight on a little more positive note. Jacob and I got featured in this article today about hope and living with mitochondrial disease:

http://www.statnews.com/2016/02/11/mitochondrial-disease-therapies/

Thanks again to all of you checking in with us all day long. We feel your support every step of the way.

Love, Jacob & Maria.

P.S. For all of you who have asked about Sarah. She is still home with a cold, but doing a little better tonight.