None of the specialists provide us with any answers, just more medications. Everyone is waiting for the cultures to come back and provide some answers but nothing is growing in those cultures. Seems that the original antibiotic prescribed at the beginning of the week did not kill the bugs but are active enough in Alex's blood that they are preventing the bugs from growing in a culture for identification.
By Sunday afternoon the pediatrician Dr. R. agrees with me that he needs to sleep better and finally prescribes some morphine for Alex, which goes over really well, he can finally sleep...if it weren't for the nurses having to check him every couple hours for temperature, give him more meds, etc etc.
Monday goes by with not much else happening. Alex still has a fever, his eyes are still swollen shut and he is retaining water everywhere. One nurse who had not seen Alex before commented on how we are lucky that he is such a stocky kid, it should help is recovery. As you all know the word 'stocky' has never been a word to describe Alex! That is how much water he was retaining. So another drug to counteract the water retention is added to the mix and begins to work quite quickly.
Monday night/Tuesday morning prove to be the most challenging to date and Jason is overnight with Alex. Up until this point Alex has had 4 different IV sites which failed due to him pulling them out (this stopped once they gave him morphine) and his veins collapsing. The last IV fails around midnight and it takes 4 hours, 8 tries and a few different nurses to finally get another one started on his foot. When I take over for Jason in the morning he is completely exhausted and my son looks like an overstuffed pincushion.
Within a few hours this new IV fails as well. His nurse suggests that maybe it's time for a PIC line, a line that is only used for longterm IV patients as it is surgically inserted and can last for up to 3 months at a time. The line goes both ways: he can receive medication through it as well as have all his blood draws taken from it. This would remove the need for the IV and the regular blood draw pokes he is getting in his other arm. I agree to have this inserted immediately and Jason's only comment is "why didn't they do this sooner??"
Alex is also scheduled to have an MRI completed on Tuesday afternoon. Both the PIC line insertion and MRI require Alex to be knocked out. The anesthesiologist and Dr. R. both go to bat for us and arrange for both procedures to be done at the same time rather than separately which is what the PIC line department wanted us to do.
When Jason comes back that afternoon the MRI and PIC line have both been finished with success and Alex is recovering in his room. Troy is being watched by someone (sorry I can't remember who) so we are able to meet with the large team of doctors that evening together.
It turns out the MRI, which wasn't expected to reveal anything, revealed blood clots in two of Alex's four arteries leading into his brain. All the doctors are shocked. There was already some small damage in the mid right brain that control motor function and executive decision making. The doctors all recommend that he be started on steroids to reduce swelling and blood thinners immediately. Everything is explained to us but we are so tired of delays that we don't even care anymore, just start the drugs now and tell us about what you are doing later!
These drugs finally provide the turning point in Alex's recovery. He finally starts to show some reduced swelling in his eye due to the steroids and his fever disappears sometime in the following days.
More to come.
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