26 April, 2014

All went well

Robert returned to the hospital Monday morning to have his new port put in, and a round of admission chemo. The surgery went well and he is is recovering nicely. For once the three day chemo admission was actually only three days, and he got to come home for the weekend.

12 April, 2014

A welcome respite

Robert made it home yesterday afternoon. And the good news is that it was decided to not re-admit on Monday, but to postpone one week allowing his body to recover.  Barring any emergencies this will give us all almost 10 days together.  He is feeling fair but excited to be back home  His hair is coming out pretty fast now, so I'm going to tighten it up with a close haircut tonight.  He skin is extremely pale and looks paper thin. Though I must say it doesn't look that way in the photo below...maybe the camera.   His Chest and the insides of his arms are still heavy with deep purple bruises.  He is pretty weak needing to mostly sit, but is in really good spirits and happy to be home. Ben and Allie are excited to have their brother back home, and certainly glad that Mom is back home to do things the "normal way"...not Dad's way.  The kids are playing, and were doing some work outside and around the house.  Switching between enjoying the beautiful weather in the shade out on the porch.  It's a great weekend.

08 April, 2014

Tuesday 4/8

The surgery was over quick and went well. Robert rested this afternoon and is feeling good. Now he must wait the rest of the week for the infection to clear before he can come home. The new picc line will likely wait until Monday. I worry about him getting that news.

07 April, 2014

Monday 4/7, a few results

Today's Flouroscope did not show the cause for the problems in the portacath, nonetheless it is still not functioning properly.  Robert will have surgery tomorrow to have the malfunctioning unit removed from his chest.  Unfortunately they cannot put the new one in at the same time as they normally would until his infection clears.  This means that he will have to get a picc line installed to use until he is cleared for another surgery to install the new portacath.

He is otherwise doing well with the antibiotics and being off of the chemo.  He would have likely been able to come home tomorrow and stay for the rest of the week.  But now with the surgery added, he will have to stay through Friday at least, and is scheduled for readmission on Monday.  So we'll be lucky to be all home together for the the weekend at very best.

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.