Thursday, September 22, 2011

Cultures & Medicine

We ended up moving back to peds, which means the doctors feel he is heading in the right direction. The bacterial culture from this morning came back negative for the first time since we were admitted. That means the treatment seems to be working. Also, Jacob’s c. diff infection came back negative. While that is good news, I’m not holding my breath on that one since we’ve had negative results before only to come back positive again. The para influenza virus that Jacob was admitted for a couple weeks ago is still coming back positive, so they started him on an antiviral to help him. The positive reading could just be from proteins that the virus made in his blood, but they want to treat him for it just to be cautious. If the treatments go well, we could be home in 7-10 days. They are also treating Jacob’s central line by letting an antibiotic sit in there for 12 hours. They don’t want to take any chances of the bacteria sticking to the line and coming back. I’m glad they are being very thorough. Jacob seems to be feeling better. He can sit up on his own to play for a few minutes and he is happy, which makes me happy too.


I missed that smile!

Jacob didn’t have any fevers last night and slept well. I was even able to snap a few happy pictures of him before bed. He got blood yesterday which also helped to perk him up. It sounds like we might be moved back over to the peds floor today. Their concern right now is that Jacob's temperature is actually running low, which the doctor said could be a sign of infection.

On another note...
The view of the nurses strike from our window

Tuesday, September 20, 2011


My brave little man

Jacob was transferred to PICU early this morning after one of his blood cultures came back as gram negative rods, most likely e. coli. Needless to say, this is a very dangerous bacteria, and even more so for CGD patients. Jacob’s cells are helpless against this type of bacteria and he can only be cured through antibiotics. I’m glad we immediately brought Jacob in yesterday. He slept the entire day and night and didn’t break his fever until later this morning. It’s starting to rise again and we are waiting for a dose of Tylenol to come. He’s been awake today, albeit, miserable. His body must just ache because he cannot identify where it hurts, but he just cries at the slightest little thing. The fact that he’s awake is a step in the right direction according to his doctor. If he continues to improve, we will move back over to peds in another day or two to finish his treatment and recovery. In the picture, he is undressed down to his diaper to try to help bring his temp back down. This is Jacob's first hospital stay where he has slept in a big boy bed and it's so nice to be able to lie down next to him to comfort him. He seems to really like it, too.

Monday, September 19, 2011


Jacob is back in the hospital for the second time this month. I brought him in a couple of weeks ago because he was spiking a fever and for a BMT patient, that can be very serious. After a couple of days, Jacob seemed to be improving and there were no red flags in his work ups, so he was able to come home. He came back positive for a virus, but the doctor thought his body would be able to fight it off over time. Jacob really did seem to be doing better for the past week. We went in for his check up on Friday and his liver function tests were way off, however. The doctor thought it might’ve been from the virus, but wasn’t sure. He had planned on retesting him today or tomorrow, but Jacob was spiking a fever this morning and had thrown up a couple of times, so the doctor had us bring him back in to the hospital right away. Jacob is sleeping now and getting some iv hydration, along with some antibiotics. He took some Tylenol an hour and a half ago, but his fever has stayed the same. The doctors are considering moving him over to PICU so he can be more closely monitored.

We also recently found out that Jacob’s new bone marrow is almost entirely gone. His body rejected the graft and he has mostly his old cells back now. A lot of people ask where we go from here. The doctors have talked about infusing more cells from the same donor. This idea may have worked a couple months ago when he still had more donor cells, but now it is pretty much just a shot in the dark. Another option could be to do a second BMT. The thought of putting Jacob through that and starting all over again turns my stomach. He is still so fragile and weak from the first time around and from whatever he is fighting now, it just seems like a bad idea. I’m not even certain that his body could handle it. He definitely couldn’t handle it in the condition that he is in right now. I told the doctors we are not ready for that. For now, we just hope that his body heals and that his prophylactic medications protect him from CGD related infections.