Saturday, May 21, 2016


Joakim and I escaped for 72 hours this week. We had been ready to cancel the trip more than one time. Should we truly leave when Jacob wasn't feeling 100%? My neighbor talked me out of it in the grocery store Saturday afternoon. We needed to go, we needed a break! There is never a perfect time to leave Jacob.

Las Vegas did give us a break. We got to sleep. Ironically, sleep is the first thing that comes to mind, and we went to the city that never sleeps. We relaxed, we saw a fantastic Cirque du Soleil show, we ate and drank well. We discovered In-N-Out Burger. Most importantly, we had time to just be husband and wife. It's a great feeling to simply have fun, laugh, and have great conversations with your hubby instead of discussing the new formula mix for continuous feed, the medication schedule for the night, and how much pee and poop we had out for the day.

As we were sitting in the airport going home, I browsed my phone and came across this article:

As with anything in life, not everything is applicable to your situation. There are endless articles and blogs on the theme special needs children and parenting. This piece did speak to my heart on so many levels. I realized how important it is to make time for your marriage,if you do want it to stick. These short getaways are crucial to reconnect, but also for myself to lower my guard a little when it comes to our boy. Don't take me wrong. Jacob was on our mind a large majority of the 72 hours. I don't think I can count the number of phone calls to coordinate blood draws, antibiotics, picking up medications, scheduling doctor's appointments, and trying to assess our son over the phone at the same time as we were walking down the Strip. Tuesday, I didn't truly relax until Jacob's night nurse texted me to say that he was sleeping soundly and his heart rate had finally come down from being elevated all day long. As I was taking yet another call in the casino, I was wondering what other people discuss on the phone while they are gambling?! I was going for a run only to be interrupted by Dr. E giving me a rundown of Jacob's lab results. I could hear on her that Vegas is not her vacation destination of choice :-

Despite tired souls, we do fight That was truly put to the test the minute we got back from our mini vacation. Jacob still didn't look great Thursday morning. Joakim decided to take Jacob to Special Care as I went in to work. We were looking for a source of pain, but didn't know exactly what we were looking for. X-rays were ordered for chest, abdomen and Jacob's left elbow since it looked swollen. Bingo! Something was found on each x-ray. Jacob's x-ray hasn't improved since our PICU stay earlier this month. A new antibiotics was ordered to treat his lungs. An ileus (blockage of the intestines) was found. Gut rest was ordered, and IV fluids for 24 hours. The x-ray of the elbow showed elbow joint effusion. In layman's terms, we're talking a fracture that is not visible on x-ray.
IV fluids at home is a blessing, but who had any idea how difficult it would be to get that pump going? Luckily, we have a nursing agency with great support, but it was past Jacob's bed time before we were finally set to go. The evening didn't end there. I still had several hours worth of work from being out of the office for three days. Vacation did feel very far away 24 hours back a home again.

This is Jacob yesterday. IV fluids running. Knee mobilizer still on Jacob's leg for his broken tibia bone, splint on his left arm for his elbow joint effusion. Jacob being in pain from broken bones and his ileus. None of these things are life threatening, but Jacob's current situation worries me. He doesn't catch a break right now. He has no chance to recover from one illness or fracture until he is hit again. If Jacob gets seriously ill right now, I am going to seriously worry for his life. And it's very hard to see him in pain. Very hard.

I will leave you with the words from the article writer:

Indeed, I will continue to fight, just as all the other parents on this journey with their child who has a life-limiting illness will do. We will fight on all levels, with all we can muster, because that is what we must do.

And so the fights goes on.

Love, Maria.

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