Friday, July 3, 2009


Jacob has now been home for 7 days. On top of sepsis, pneumonia, pseudomonas, and respiratory distress, Jacob caught a virus. He had a fever in the hospital on Friday, and Tuesday the culture came back positive. It explains the daily fevers, runny nose, and constant coughing.
I thought Jacob was weak after his pneumonia in December, but this is different. His doctor sat his nurse and me down on Tuesday afternoon again explaining the seriousness of Jacob's last illness, and that it's a miracle that he made it home. The only way for Jacob to recover is to give him time to do so.
I do believe her. Sarah wanted to go swimming Monday night, and I took Jacob along in the stroller. Unfortunately his suction machine was on low battery, so didn't do the job as well as it needed to do. We were very close to ending up in the ER again due to Jacob being completely in distress, high fever, and labored breathing. The whole venture was a total of 30 minutes, but clearly demonstrated how weak Jacob is. After that, we're staying home, only going to the doctor's office as needed.
This is also the first time I can truly see Jacob needing 24/7 care. We can't leave him alone at night. It's not enough that we sleep in his room, we need to be ready to suction him any time he coughs and monitor his fevers. I do appreciate the nurses coming in at night, and giving us 8 hours of rest each night. We just extended it through next weekend, so that will be good.
It's hard to live like this when you're a pretty social and active person, typically having a pretty busy schedule away from home. Now I only leave the house, if Shannon is working. On the other hand, there is no other way right now. In the back of my head, I'm focusing on Jacob getting better each day, and each of his smiles is helping me to focus on this. I look at Joakim, and I'm not sure if he or me look more tired. I also feel emotionally tired. I can't let my emotions about Jacob's illness come through right now. I am focused on getting him and Sarah through the day. Jacob as healthy as possible, Sarah as happy as possible.
On the positive side, I have had more alone time with Sarah this past week when Shannon has been working than in a long time. That's great, and we should definitely do more of that. When I have both kids, Jacob always gets most attention. There is always a feed that needs to be prepared, a medication that needs to be given, suctioning has to happen etc. etc.
The seizure project at Children's will start up this coming week. I am excited to start working with the medical team on this. My first cross hospital meeting will be in September in St. Louis.
Jacob also got a very generous funding for warm water therapy this past week. We will start that up at Bal-Swan end of summer. That is exciting! And I am getting a massage today for my shoulders and neck, so that will be a nice treat. You do start treasuring the small things in life.
For 4th of July, Sarah has a bike parade, BBQ at the pool, and a party at our neighbors' house. Joakim and I will take turns going with her, and the other one will stay with Jacob.
Happy 4th of July!
- Maria.

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