06 April, 2014

Here we go

I haven't posted anything in a while, because things have just been moving nonstop.  But this morning I'm sitting in a Children's Hospital with the time, opportunity, and motivation to get those who care caught up on our goings on.

I no longer travel for work. So, with my newfound proximity we have switched the way that we are handling Hospital admissions.  Kasie is staying at the Hospital with Robert during the week, while I get Ben of to school, and drop Allie off at a friends house allowing me to work a full day.  If I cant make it back for the bus, Kasie coordinates Ben being dropped off at a friend or neighbors house, or staying after at school for a bit.  I pick both of them up on my way home.  If the stay extends through the weekend, on Friday night I'll drive to the hospital with the kids.  We'll all visit together for a while, then switch places.  Kasie will go home to spend the weekend with the littles, whilst I stay with Robert at the hospital through Sunday.  Switching back Sunday night or early Monday morning, the process starts over.  It works well as long as Ben is healthy.  When he gets sick, the system gets more complicated...but we manage.  Once you outwardly gain control over your emotions, logistics becomes the hurdle.  We couldn't do it without the selfless support of the amazing network of friends and neighbors that we have.  

Robert finally had his first admission therapy for the new protocol last week.  It was originally scheduled earlier,  but he was too Neutropenic to begin. Last week the counts were good enough  to proceed.
Kasie and Robert the first night-
The plan was for 2 nights and a wake up before heading home, but it evolved into an entire week in the hospital.
After finally coming home last weekend, he got to spend a few days at home before a fever sent him to the ER on Thursday.  They had an extremely difficult time accessing his port-a-cath in the ER.  Fearing that the device had moved out of position, they decided that they needed to switch to a standard IV.  They had difficulty doing that as well.  Admissions determined that there were no beds available on a floor appropriate for Robert, so he was then transported via ambulance to the other branch of CHOA.   When he arrived here they were finally able to get his port accessed, but after several previous tries his chest is bruised and sore.  His platelets were very low, making him bleed and bruise very easily. Once the port was finally accessed they noticed that it did not seem to be functioning properly, an issue that we're still dealing with now.
His arms are covered in bruises from IV access attempts while his platelets were low.
It looks like the fever was cause by an infection in his port, which is not related to its function issues.  He is on antibiotics for the infection and has received a blood transfusion and a couple rounds of platelets.  His counts are starting to turn back to where they should be except for platelets, which are commonly the last to turn.  He received another platelet transfusion just this afternoon.  His chemo is being held for now until he can recover a bit. Once he finishes a couple more days of IV antibiotics, his counts rally, and he is fever free, we can bring him home for a little bit.  As far as the function of the port, it is in all likelihood mechanical.  Fluids are going through, but slowly.  If they try to push them through at normal speeds the pump receives a pressure error.  Possibly a kink in the line.  He will be getting a fluoroscopy in the morning to get a better look at the mechanics to see what is going on and we'll take it from there.
He's hanging in there.  He has been very weak, and rather concerned about the issues with his port.  He is generally very protective of his port and is very aware of the situation and the options. He's always been afraid of people touching it, or something happening to it, so there is some added concern there for him.  He's been having quite a bit of pain in his knees and back, but I think the docs are finally managing it properly after a little motivational discussion.  His lungs were crackly when we came in, but have cleared from the breathing treatments.  He seams to be getting back on track from this detour.  Tomorrow will bring more trend data in the counts, fluoroscopy results, and more information.