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After doing Katie’s senior pictures, I had to talk Michael into doing a few pictures for me. By talk, I mean bribe, bargain, and cajole him to let me do “a few” pictures. Joanna and I took him out and got more than a few and I’m thrilled with getting more than twenty of them!! I’ll add those to the portrait ones we did earlier this year and have a nice set of senior pictures for him. I’m not embarrassed to insist my children are gorgeous.
Okay, today is Monday, time to regroup and update where we are at. We are still at the hospital and have a “no earlier than Wednesday” leave date. Michael’s culture’s grow very slowly, so just when they think they are in the clear (and normally would be), the next day they start to grow something. His first three days of cultures grew bacteria, Friday’s we should know pretty well by tonight, which, of course, we are hoping are clear. Apparently bacteria can lurk a bit in corners of the heart and etc. and they want to be sure they have nailed any lurkers, so Wednesday is the earliest.
Of course, if any of the cultures grow anything new, then plan B would have to be enacted. It sounds to me like plan B would be pulling his PICC line and replacing it (although at that point I would discuss whether we could just pull it, be without it for a couple weeks until his central line goes in on the 30th–although they are talking about IV antibiotics at home so then we might as well have the PICC, we’ll see).
Michael is feeling better, no fever spikes, no hives, still a nasty cough but it doesn’t have the really nasty sound of last week. Those cultures (respiratory) are all in the clear so at this point its just a cold we are dealing with–one benefit of all these antibiotics for the blood infection is I doubt pneumonia even had a chance to grow in that climate! He is, understandably, tired of being here, tired of being in this room, and ready to go home. Still, as far as hospital rooms go, he has a pretty sweet set up with most of the comforts of home.
One interesting twist, we cringe at colds with him, for good reason. When we hear the sound of a cough shift we get a cold knot in the pit of our stomachs, especially now with his respiratory function so low. In this instance, though, having that (unrelated) cough was hugely important. Sepsis becomes incredibly dangerous if not caught in the first 24-48 hours, exponentially so for kid with compromised immune system. It takes a lot for Michael to have ANY kind of a fever so I doubt that he ever would have gotten a blood culture done that soon if it hadn’t been for us going in Monday for an x-ray of his lungs. Conversely, without the blood infection he probably would not be nailed with high powered antibiotics which have certainly kept pneumonia away. Just saying. Things happen for a reason and him having two unrelated issues whose treatments interplayed to benefit the other ends up being a good thing—-though obviously having neither would be best!
We had our hopes raised and then dashed today 
and for an hour or two we thought we would be heading home today. Michael had a rough night last night with coughing, a splurt of hives and a dash of mild fever, and being up all night going to the bathroom from the TPN. This morning his hem (blood doctor) came in and said that nothing had grown and they believed the first culture must have been contaminated and that she was comfortable with him going home. I talked to the nurse as I felt uneasy as *something* was obviously up for him to be doing any kind of fever and his coughing was really awful although everyone agreed it was keeping stuff up and out of his lungs. We hadn’t met with his pulmonologist yesterday so she called and he stopped over to see Michael. He said his lungs sounded good for him and, like the hem, was comfortable sending him home after they did a different culture way down his nose into his throat and that he would call something in tomorrow if any infection was running around there. I still felt uneasy about it but I understand it is important for him to *not* be in the hospital if at all possible so as not to catch something there, so I told Michael that it looked like he would be going home. He was half asleep and said he didn’t want to go home (a first time in 19 years), shocked, I asked him why, and he said he was too sick to go home and went back to sleep. Ten minutes later, his hem Dr. zipped in and said, “Um, sorry, but you aren’t going anywhere.” Apparently Michael knows his own body, the culture from yesterday (which was *after* he was nailed with some heavy hitting antibiotics) had grown more than one type of germ/bacteria/infection whatever you will.
So they did a culture down his nose and into his throat for his lung doctor, we’ll see what that shows tomorrow on that end. The plan is to hit him again with the “big gun” antibiotic that they hit him with Monday and changed up the secondary antibiotic to one they hope is more effective killing the bacteria. As I understand it, the goal is to hit hard and knock it out of his system before it can overwhelm his system and put his body in shock (sepsis). His nurse said not to expect to go home until sometime next week, so we’ll just take it a day at a time.
Hopefully he gets more sleep tonight since it isn’t a TPN night (which makes him go to the bathroom all night), we could use a good night sleep!
Michael has had a cold that got nasty over the weekend, and then on Monday he ran a slight temperature, which with his immune issues is something to pay attention to. We went in to see his hematologist because his lung doctor was very busy to get an x-ray. She went ahead and cultured his throat, nose, and blood and we went home to wait as his x-ray didn’t look too bad. Yesterday morning (Tuesday) his doctor called and said his blood culture was positive for an infection in the blood and that we needed to come in. The cultures take a range of 24 hours to 4 days for full growth so they didn’t have a particular strain or known sensitivity (which antibiotic would best kill it) but they didn’t want to wait that long. He came in and they hit him with two antibiotics, one of which is a “big gun”–which also started some hives, but they caught them quickly. Right now he is on a second antibiotic every 8 hours while they find out more from the first culture and start to get results from the second culture they did yesterday and they took another early this morning. His fever was up last night and he had a bit of a rough patch but he was feeling better around 10 or 11pm and he slept pretty good (other than the normal getting woke up every couple hours being checked) last night with some medication.
His fever is down this morning, though his heart rate was up a bit and he is tired and has some pain around his left rib cage. So we’re just in a “wait and see” mode at the moment as we wait for test results.
