I AM LIVING THAT DREAM

Lately, I feel I am living that dream where you try to get to a specific place, and you never make it to the destination. Every time you're getting close, something is getting in the way. I feel I am living that dream lately.

Jacob was home for six days. We finally left the hospital a week ago, and was hoping Jacob would get plenty of time to recover at home. It's summer time, which is typically an easier time for our boy. The six days at home were not without excitement. Managing diuretics with blood draws, balancing edema and dehydration, meant we talked to the kidney center every day including the weekend. I definitely felt we were on new territory.

We had a good weekend despite kidney problems. We were able to catch up on some yard work, Sarah made sure to have a series of sleepovers, the kids got to hang out together at home, and best of all, Jacob got to be in the pool! He also got see his good friend Brittany.

 

 

 

 

Monday, Jacob had a hard day. He had a high heart rate most of the day, and in the afternoon we had to treat a seizure. His kidney doc was concerned he was getting dehydrated. Tuesday was a repeat of Monday, just a little worse. Jacob just didn't look great Tuesday evening. We had plans to go in to Special Care today, but I just didn't feel comfortable to possibly have a dehydrated kid needing IV fluids at home for another 18 hours before he would be seen.

 

As Sarah and Joakim were at Sarah's beach volleyball tournament, Jacob and I headed to the ER. I had called the kidney center ahead of time, hoping we maybe could just do a bolus of IV fluids and then head home. Well, his lactate was through the roof, so there was no word about going home, instead more tests were ordered, IV antibiotics started, and a bed ordered in the PICU.

 

This morning before I was heading in again, Special Care called and said that he had a possible intestinal ischemia! I wasn't surprised that something was going on with Jacob's GI tract, since this already started during our last hospital stay, but ischemia?! So very scary.

 

The PICU team is feeling Jacob looks a little too good for having ischemia. His vitals are stable, and his lactate improved overnight. Today has been a "wait and see" day in the fish bowl. The test to determine an ischemia is not taking lightly, since it can impact his already overworked kidneys. His belly is big as a balloon, and looks so painful. He is also having more edema tonight. I am curious to see what tomorrow will bring. Luckily, we have our German attending who actually knows and understands mitochondrial disease pretty well.

 

A dear friend texted me this morning and said that I must be so worried for Jacob. The feeling I am walking around with is numbness. We're going on a month of this emotional rollercoaster watching our boy fight so hard for his life. It's hard to see an end in sight or the light at the end of the tunnel. Jacob's medical issues are piling on each other, and creative minds are trying to figure out how to balance it all. I feel terrible for Sarah's summer break turning into us living at Children's. I can see that balancing work, regular life commitments, and a very sick child are weighing on both Joakim and my shoulders, a little heavier each week. When did we last socialize with our friends outside of the hospital walls? When did I cook a meal? When did I do something spontaneously with Sarah?

 

What keeps us going is our boy. That Swedish resiliency and stubbornness. If we can get him home and to a better place medically, it's all worth it. We are holding on to hope that we can wake up from this dream, and found ourselves at our destination.

 

Love, Maria.