Saturday, September 22, 2012


Tonight I am writing because I need to straighten out this day in my mind. If not, this day will follow me into my sleep, and I will not have a good night.

There were so many signs that we should not have gone to the Botanical Garden today. The first sign was that our Sarah was tired from her sleepover, and simply wanted to stay home. I was set to get us all out in the warm fall weather, since I know colder months are around the corner.

I was surprised how bad Jacob's breathing was after his second vest treatment, and the fact that he had just been suctioned, but still rolled him into his van. We dropped Sarah's friend off on the way to the Botanical Garden, and we had to suction Jacob outside her house. We then had to stop in a parking lot not more than 5 minutes from our house to suction Jacob again. I remember saying that maybe we simply shouldn't go today. We were not more than 5 minutes from our house, and we had already stopped twice to suction Jacob. The weather was very nice today, and we had been home with Jacob all week due to his cold, so we decided to still pursue our destination.

In the parking lot of the Botanical Garden, I deep suctioned Jacob again. I was thinking to myself that no matter how hard we try to be a "normal" family, we're not. People stroll by with their strollers or their kids by their hand, and I have used suction catheters and gloves around my feet.

As we entered the garden, we realized it was a free admission day today. That explained how many people were in the park and the full parking garage. I love that several of Denver's main attractions do free admission days, but it is just not a day to bring Jacob. We made it around the park, but made a smaller loop today. We did have time for an ice cream in the sunshine. We were ready to go home. Sarah really wanted to go into the tropical garden. We decided that Joakim would go with her as I was suctioning Jacob one more time.

And this is the moment that is completely surreal when you are in the middle of it. I never got to deep suction Jacob. He started to cough uncontrollably, and I basically had to hold the suction catheter in his mouth for many long minutes, so he wouldn't aspirate on his secretions. In the end, he was coughing up blood. At the same time as Jacob was coughing and I was trying to catch his secretions, Jacob started to look purple, and then blue. I realized that the oxygen tank was out...and no Joakim in sight. The park was full of people, but who can change an oxygen tank? Not many people I know...I also knew that Joakim had forgotten his phone in the car, so I couldn't call him. In the end, an employee asked me if he could help, and I told him to run into the tropical garden and shout for Jacob's dad! He ran - and then Joakim came. He changed the oxygen tank as I was calling 911. As I was talking to the dispatcher, I was trying to get Jacob wheeled out of the garden.

When you call 911 and have an underlying medical condition, the questions don't always apply. Yes, Jacob was blue. No, Jacob had not passed out. No, we had not an AED defibrillator with us. No, Jacob doesn't have asthma. When I told her that his oxygen level was down to 80, she thought he was suddenly 80 years old! In between her questions I was trying to understand from her how much longer before the ambulance would actually show up.

Sarah told me that people had been staring at us, and had been stopping outside the entrance to look at what was going on. I didn't see any of that. I was just focused on Jacob's oxygen level, and his secretions. The ambulance crew had no idea what a mitochondrial disease is. It just felt that "our normal" was so misunderstood and foreign to the ambulance crew today. I felt that I had to act as a hawk to make sure that they didn't do anything unnecessary to Jacob as we were flying down Colfax to Children's Hospital.

Jacob is tonight in the PICU once again. The x-ray showed atelectasis (collapse of part of the lung) and the radiologist wrote in his report "worrisome for pneumonia". That means that IV antibiotics were started right away to cover both pneumonia and pseudomonas. Tonight, Jacob also spiked a fever.

I have this unsettling feeling about his tooth still. Jacob swallowed a tooth Thursday morning. We still have seen no trace of the tooth. The chest x-ray yesterday didn't show it in his lungs, but what happened today is exactly what the doctor told us would happen if Jacob has a tooth in his lung. He would spike a fever today, and he could develop pneumonia due to having a tooth in his lungs. It could also be his cold taking a turn for the worse. I am hoping for that cold, but I know that I am going to have to bring up that little tooth once again tomorrow on rounds. I just have that unsettling feeling from not finding that tooth yet.

It was an exhausting day. It was a day when mitochondrial disease showed it's ugliest face on my beautiful son.

Love, Maria.

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