Monday, April 22, 2013


Many special needs parents have to quit their jobs in order to care for their child and attend to doctor's and therapy appointments. I consider myself very lucky to have an understanding employer who has sticked with me through long hospital stays, endless doctor's appointments, sudden ambulance trips to the emergency room, and the list goes on and on.

My employer puts on a company meeting about once a year when all of us get together to reconnect, revisit goals and vision, and have a lot of fun together. This was my 9th company meeting. That is the time of the year when I go back to a full-time work schedule, and leave Jacob in the care of Joakim and his nurses. doesn't really work that way. When Jacob doesn't feel well, he never just feels a little bit under the weather, it is always pretty bad and can quickly get worse.

So as I was in the middle of giving a 4-hours training on management leadership to our management team, I could see a text message popping up on my phone: Fyi, Jacob seized earlier and we medicated. Medicated? We haven't treated a seizure for 5 months, so I knew it meant trouble. I went on talking about coaching, motivation, and the importance of communication. Once in a while, my eye landed on the phone, but no more text messages were popping up. I saw that as a good sign. It meant that Jacob was most likely still at home.

As the training was completed, I had an afternoon of back-to-back meetings. I asked for a quick bathroom break, and called Joakim at the same time. I found out that Jacob had gotten into status epilepticus. He had had a 70 (!) minutes long myoclonic seizure. Yikes! As I was in my next meeting, I got the video with Jacob's seizure in my inbox. I quickly viewed it as we were planning a team building activity. I also was able to quickly get a text message to Dr. C. telling her about Jacob's seizure, and that we needed to talk.

Later in the afternoon as we were going through the team building activity, I had to excuse myself as I saw a call coming in from Children's Hospital. Dr. C. wanted to discuss the seizure and a plan of action.

The next day, there was no going in to work. I had to pack up the car for a day at Children's. The day of the seizure, Jacob had his scheduled labs, and it was clear that he had an infection brewing. Dr. C. wanted to have a full workup of Jacob to find the source of infection. It didn't take long. Jacob had an ear infection on his left ear. Labs got repeated, and we had a little hiccup... His kidney function was completely off. Nephrology got involved, and an ultrasound of his kidneys and more labs were ordered. An obstruction of Jacob's kidneys was a possibility. Would we be able to leave the hospital in time for my company dinner or would Jacob be admitted? In the end, Jacob's kidney function was fine. What it did tell Dr. E. is that Jacob most likely is retaining his urine. His kidney values were completely off when his bladder was not emptied properly. After a 5.5 hours long doctor's appointment, we left with antibiotics for the ear infection, and a protocol to measure all Jacob's urine and also catheterize him 2-3 times a day. I quickly changed, put on some make up, unpacked Jacob's stuff from the day, and drove off to the company dinner. It is sometimes hard to switch from Jacob's medical world to every day conversation. Despite possible kidney problems and catheterizing, it turned out to be a fabulous evening with great company, fantastic Italian food, and too much wine :-

The next day was a day full of meetings followed by dinner. I felt better, since we now had a plan for treating Jacob's ear infection and his bladder. It didn't take long before I got a text message from Joakim asking some questions around Jacob's antibiotics. I told him to call Dr. E. to clarify. The day went on with presentations, lunch, and team building. I could see that my voicemail was filling up with phone calls from Children's...In between activities, I quickly listened to the messages to see which messages I had to return since it was Friday afternoon. In between timing a team building exercise, I was able to schedule a sleep study, reschedule a GI appointment, and straighten out Jacob's antibiotics!

I had a great week, but I would lie if I would not say that it is a balancing act. I doubt many of my colleagues noticed much of my activity around Jacob except a few of them who know me really well, and always checks in on my little boy. At the end of the day, I have to say that I have come a long way balancing work and Jacob, and when I finally hit my pillow on Friday night, I felt fortunate to have both worlds. It keeps me balanced. It makes me happy.


And as I was busy at work, Jacob got to try out another talker! We're still trying to figure out which one will work best for our boy.

And look what my Spanish colleagues and friends got Jacob! A super hero shirt, so perfect!

And poor little ears of Jacob. He has not felt well all weekend, and today his other ear started to drain. He is now on two different antibiotics to kill this ear infection, and Jacob finally seemed to perk up a little bit tonight.

Love, Maria.


  1. Maria, God Bless you, Joakim, and Sarah for the remarkable love and care you all give to Jacob. What a blessed little boy he is to have you all by his side! Hugs and continued prayers, Linda

    1. Thanks Linda! How are you guys? I hope everything is going well with your family as well!