Journal entry by Becky Link —
Hi friends. It's been another rough week at HUP. Dad started having fevers (101-103) overnight. They did blood cultures and urine cultures and CSF cultures (they found his white blood cell count to be high) at the beginning of this week, but nothing has grown in the petri dishes, which is increasingly becoming Dad's M.O. They hooked him up to an EEG machine to review his brain waves and monitor for seizures (of which there were no signs...) The team also did a chest x-ray and an MRI. Those results unfortunately were both positive - he has pneumonia (probably from aspirating one of the numerous times he's vomited) and ventriculitis (inflammation of the ventricles). Oh, yeah, and guess who tested positive for C. diff AGAIN?
So, Friday we were faced with the decision (not really...) of what to do next. His neurosurgeon (whom we still love and trust) said she wanted to remove Dad's two shunts as soon as possible because they're probably harboring both the white cells and bacteria. Even with the copious amounts of high-test antibiotics, their rationale is that he's been on them too long, and what good would they do if the artificial hardware in his system continued to put out more bacteria? Remove the source --> flood the system with antibiotics --> the system gets better. It makes complete sense, but it means another surgery. Yes. Another surgery. #7. Seven major surgeries in 19 weeks. W.T.F.
And so, here I am at 6:whatever on a Sunday night sitting on the 672 Keystone Services train for a sleepover in Philly. Dad's surgery is scheduled to start at 7:30am tomorrow (which means he's headed to pre-op at 6:30am) and last approximately 45 minutes, barring any issues. And because I'm a neurotic mess, I can't let him go into surgery without saying goodbye and telling him I love him, so I'm going to get to the hospital around 6am. Double WTF.
He hasn't really been "Dad" for about a month or so. He doesn't communicate, both verbally and non-verbally. He is rarely awake, and when he is, he stares blankly at the walls, the TV, his nurses, etc. He does still move his arms and legs, but it's more automatic response (scratch an itch) vs purposeful communication. And usually, he keeps his arm up at his head after he's itched, like his brain has forgotten what his arm was doing.
I'm really getting tired of this miserable roller coaster of emotions and feels and surgeries and medical issues. I'm at a point - between work and Dad and homelife - that I'm super stressed. I've even started using my TENS unit again. Thankfully, work should be slowing down (my third of three events in the past month ends on May 11), but I can't help but pessimistically think that things are going to get worse in other avenues of life. And I'm seriously afraid of what else can happen right now. You know? Like, how many layers is in this shit cake? Just when I think I see the cherry on top, it turns out to be another layer or two. At what point can I light it on fire and call it flambe?
Oh, friends. Things are just rough right now. Send positive thoughts and peaceful ju-ju towards Philly and our family. Honestly, prayers for calmness and comfort and grace are really what we need.
xoxo,
Becky
So, Friday we were faced with the decision (not really...) of what to do next. His neurosurgeon (whom we still love and trust) said she wanted to remove Dad's two shunts as soon as possible because they're probably harboring both the white cells and bacteria. Even with the copious amounts of high-test antibiotics, their rationale is that he's been on them too long, and what good would they do if the artificial hardware in his system continued to put out more bacteria? Remove the source --> flood the system with antibiotics --> the system gets better. It makes complete sense, but it means another surgery. Yes. Another surgery. #7. Seven major surgeries in 19 weeks. W.T.F.
And so, here I am at 6:whatever on a Sunday night sitting on the 672 Keystone Services train for a sleepover in Philly. Dad's surgery is scheduled to start at 7:30am tomorrow (which means he's headed to pre-op at 6:30am) and last approximately 45 minutes, barring any issues. And because I'm a neurotic mess, I can't let him go into surgery without saying goodbye and telling him I love him, so I'm going to get to the hospital around 6am. Double WTF.
He hasn't really been "Dad" for about a month or so. He doesn't communicate, both verbally and non-verbally. He is rarely awake, and when he is, he stares blankly at the walls, the TV, his nurses, etc. He does still move his arms and legs, but it's more automatic response (scratch an itch) vs purposeful communication. And usually, he keeps his arm up at his head after he's itched, like his brain has forgotten what his arm was doing.
I'm really getting tired of this miserable roller coaster of emotions and feels and surgeries and medical issues. I'm at a point - between work and Dad and homelife - that I'm super stressed. I've even started using my TENS unit again. Thankfully, work should be slowing down (my third of three events in the past month ends on May 11), but I can't help but pessimistically think that things are going to get worse in other avenues of life. And I'm seriously afraid of what else can happen right now. You know? Like, how many layers is in this shit cake? Just when I think I see the cherry on top, it turns out to be another layer or two. At what point can I light it on fire and call it flambe?
Oh, friends. Things are just rough right now. Send positive thoughts and peaceful ju-ju towards Philly and our family. Honestly, prayers for calmness and comfort and grace are really what we need.
xoxo,
Becky
Patients and caregivers love hearing from you; add a comment to show your support.
Help Harpel Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Harpel's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?