Early Saturday morning, I had to bring Jaxson to the ER. Friday evening he started coughing, but I didn’t think too much of it because it was mild and he wasn’t showing any other symptoms. 4:30 am Saturday morning, he woke up crying and felt really warm so I took his temperature and he had a 104° fever. I immediately gave him Motrin and drove to the hospital. In the ER, they drew the normal labs & a blood culture-blood cultures are a pretty standard thing when he has a fever because it could indicate a line infection. Those take 48 hours to come back, although a positive can, and usually does show up sooner. The X-ray came back, and the ER doctor told me it was a mild case of pneumonia. He was admitted to the PICU at about 9am because all of the other rooms were full. When he got settled in his room, I went home and slept because I had only gotten 2 hours of sleep. I came back up around 2 & shortly after, he was moved down to the general floor. The labs drawn in the ER also showed anemia- which I knew would. I told the doctor to get in touch with hematology because he wanted to hold off on a blood transfusion as long as possible. Since his red blood cell count had dropped a little more in just a few days & because he has some kind of infection, the hematologist decided it was best to transfuse him and so he got some red blood cells around 5pm.

The rest of the night was uneventful, and he got some rest. This morning, Dr. Graham (jaxsons hematologist) came by and saw him. He’s not sure that what he has is pneumonia. It wasn’t a pediatric radiologist that read the X-ray, so he’s going to talk to him tomorrow and get some clarity. He does have two viruses (rhinovirus/enterovirus & coronavirus) and a line infection. One virus is the same as the one he had back in November and he’s not entirely sure it went away. The bacteria that’s growing indicating the line infection is a gram negative bacteria typically found in the intestines. Again, same thing he had back in November. Since this is his second line infection in a month, Dr. Graham is going to get in touch with the transplant team and see if they want to reduce the amount of time he is on the octreotide. He’s been on octreotide since August to help stop the GI bleed he had then. His TPN is already cycled down to 20 hours a day, so all we need is to reduce the time he’s on octreotide, even if it’s just by an hour, so we can start doing ethanol locks- which will help reduce the chances of a line infection. One thing I’m happy about in all of this, is that it happened now. If it would have happened a few days from now, he’d be spending Christmas in the hospital. I’m fairly certain he will be out in a few days and we will still be able to make our trip to California. The rest of the day won’t be too exciting, I just gave him a bath and the line team will be in shortly to change the dressing on his broviac. After that we’ll just be hanging out. 🙂

It’s so tough to see him in the hospital so close to Christmas, but I’m confident he will be out for the holiday.


Transplant fund:



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