Miscommunication

Well it seems there was some miscommunication between doctors and nurses yesterday. The orders were suppose to be that if James spiked another fever, which he did regularly each time the ibprophen wore off, they were suppose to order a blood culture and start him back on the Gentamicin antibiotic. Since I was not aware that this was the plan I couldn't remind them of it either. So these things did not happen until this morning. Early this morning James spiked a high fever of 40.2 (104.4) which meant they needed to call the resident. Thankfully we were able to get his fever down without any seizures (James has had temps in the the 41's/106 area before and has also had febrile seizures several times).

There is much regret from us as well as the doctors that we took James off the Gentamicin before the full 10 days that they originally planned. The doctors explained that 5 days is normal and when Infectious Control became in involved they felt we should just go the 5 days, whereas the Respiratory Team felt that the 10 days would be better due to the troubles they were having getting the infection under control and given the experience they have with other children who have respiratory problems. Whatever the arguments were, in the end Infectious Control won out ... likely due to the dangerous side effects that Gentamicin can have if given for a longer period of time. Had we just waited out the 10 days originally we would have given the medication ample time to prove itself. But now we're worse off because we have to start over and this time they want to give it for a longer term, likey 14 days. So in the end we haven't avoid the risks that come from longer use of the medication ... unless of course, stopping the Gentamicin is not the reason for the return of the fevers.

This plan is not written in stone though. Since the fever has resurfaced they have to once again go through the ruling out process of doing urine and stool tests, nose swabs and blood work. We're not really expecting anything from these, but they have to be done anyways. There is also the fact that the bigger plan still is to move forward to doing WLL's again with the hope this will provide some better answers, which in turn can change the antibiotic plan.

But with two more weeks of antibiotics in the plan we can expect we won't being going anywhere for at least two weeks, not that we really were expecting to anyways. We are now pushing to have PICC (a central line that runs up his arm and sits by his heart) put in, which the doctors are in agreement with now. Last time they said to wait as we could be done and home in a week. We weren't all to confident of this at that time, but the doctors get the final say. This time they agree with us ... altho techincally we'd like a PORT, but that comes with more chances of complication. We knew they wouldn't agree to a PORT, so we expected we'd have to settle for a PICC. Since this procedure involved having an aneasthetic it cannot be done on the weekend, but they will start the ball rolling on Monday ... hopefully it can be done before his IV needs to be replaced again and we have to try find a vein again. Not only does a PICC mean we won't have to search for places to put IV lines all the time (several of them have ended up in his feet, meaning he can't walk during those times), but they can also do bloodwork from the PICC Line so he won't have to be poked and prodded each time they have to do bloodwork, which they seem to love doing ... it a wonder the guy has any blood left. A PICC line lasts around 30 days, although there are cases where it lasts longer. The downside of a PICC is the fact that it comes with the risks of getting infected and whenever a fever is present they then have to wonder if it's the PICC and whether it needs to be pulled ... this is there biggest reason for not wanting to put a PORT in, the longer a central line is in the more risk of infection and James' has too many unexplained fevers. So these can both make life easier and more difficult.

Today James seems more effected by the fevers ... or whatever it is that is bothering him. Yesterday he was fine as long as he had the ibprophen in him, but today he's more miserable, has less energy and he has to work harder on his breathing. They did an x-ray yesterday but it didn't show any specific or obvious difference from the last x-ray taken over a week ago. Our poor strong little guy who keeps asking to go home. Whenever we have to give him something or do something we explain it's to help him get better and his reply is "doctors help me get better, doctors help me go home". If only we could have as much faith as he does in the doctors, but we know who to put our faith in truly and fully, the words would have so much more meaning and depth if they were "God help me get better, God help me go home".