I am a little sad to say that Jacob is not doing so great after the last post when I wrote about him doing really great lately. It just shows that no matter how great things are when Jacob gets sick, Jacob gets sick. This time around, Jacob had been fighting some sort of virus at home for five days. We actually thought he was on the mend, and would be back in school this week again.
Yesterday afternoon, I got a reminder how quickly a Mito kid can get sick, and go from bad to worse very, very quickly. Jacob had been hanging out with Gemma in the morning as we were taking Sarah for an early birthday celebration to her favorite restaurant in Denver. Jacob was happily helping Gemma with her last wedding preparations, and was as happy as he could be. As he woke up from his nap, I noticed his secretions had gotten much worse. He also couldn't hold his own oxygen. He needed 3 liters of oxygen to breathe. We realized we would run out of resources very quickly with Jacob's labored breathing and need of oxygen.
I honestly dread driving Jacob down to the ED when he is so sick. I am on the highway for most of the drive, and it is not easy to stop if Jacob needs something. The whole way down to Children's, Jacob's pulse ox was alarming due to his oxygen saturation dipping down in the 80s, and his heart rate going through the roof. Due to the flooding going on in our State, most people had decided to stay at home this evening, so it turned into a pretty quick drive with an alarming boy.
There is one advantage by coming in to the ED with a very sick Jacob. You don't have to go through admission and sit in the waiting room, we can go straight to the trauma unit. This is also what happened last night. Fairly quickly, they stabilized Jacob on 5 liters of oxygen, and Jacob fell into a deep sleep. His chest x-ray showed a possible pneumonia, so it was decided to start him on IV antibiotics right away. We were also told with him needing so much oxygen, we would be admitted to the floor.
There is never a short stay in the ED. Last night, we had a very smooth stay. That we have a dear friend in the ED who took excellent care of both Jacob and myself made the stay so much better. By midnight, we finally made it up to the floor.
An admission on the floor is never quick. They want to know Jacob's medical history, what had led up to the illness, verify all his medications, go over seizure action plans, go over feeding schedules, pulmonary toileting, and the list goes on and on. I quickly unpacked, since I knew we would stay for a while. By 2 am, I was finally ready to put my head on the pillow...but Jacob had other plans. As we came up to the floor, Jacob started to feel worse. His secretions were excessive. Poor little guy was swimming in his secretions. His myoclonus was also acting up, and it is a long time since I have seen Jacob being so twitchy, especially in his face. At the same time, he developed a high fever, his heart rate was shooting through the roof, and I honestly hadn't seen Jacob that sick since last fall.
RRT (Rapid Response Team) was mentioned by the doctor. I call RRT Children's internal 911. This is a medical team hospital staff or parents can call if they feel their child is getting worse, and they will get a second medical opinion from the PICU. In our case, calling RRT always means a trip down to the PICU. It was time to pack my things I just had unpacked.
We did our third admission that night in the PICU. When I finally put my head on the pillow it was 6 am! An hour and a half later, the resident couldn't wait any longer, and woke me up to talk about Jacob...
Today was a busy day in the PICU. It is always the case the first day of admission. All specialties involved will come and see us. The PICU nurse or somebody else from the PICU team was in and out of the room for most of the day. We know Jacob has a nasty strain of rhinovirus (typical cold) that has landed many kids in the PICU lately. In addition, he has a possible pneumonia. He is treated with big gun IV antibiotics, respiratory treatments every 4 hours around the clock, and is using his bi-pap day and night. He is not out of the woods just yet, but he seems to be responding to the medications and he has not spiked another fever today. It is really hard to say how long it will take Jacob to get better this time. The attending knows that Jacob has a very important wedding to attend on Thursday this week. His own Gemma is getting married, and he wouldn't like to miss it for the world. But as always, we're going to have to let Jacob decide how much time he needs to heal.
Cross your fingers that Jacob will quickly recover this time. He has places to be!
Good night, Maria.