A new port catheter

Tonight's surgery went well. Susan went down to the OR shortly after 6pm for her procedures to implant a new port catheter and internalize her shunt, and returned to her room about 9:30.

I had a call from one of the vascular surgeons just after 7pm who said an ultrasound showed the veins near Susan’s neck on either side weren’t viable, so they’d need to implant the catheter in her thigh. The surgeon I had spoken with for consent said that might be necessary as a last resort.

I was sad after speaking with the surgeon in OR as I thought how awkward and difficult it will be to lower Susan’s pants every time someone needs to draw blood or infuse meds. I then became angry to think she’d had a perfectly good catheter in place before it was cut accidentally. Susan's been through so much.

I lifted it to the Lord and rested a while, waking up with a phone call from the vascular surgeon again. She said the procedure was done, Susan was doing well, and the neuro team was about to come in and internalize the shunt. She also said they went ahead and placed the new catheter near her neck on the left side – they’d discovered that thigh placement would be upstream of her IVC filter for blood clots. They found the upper vein on the left side of her neck to be just fine. What a relief. My prayer went from petition and waiting to thanks. God is good in attending to these details.

It’s been nearly a month since Susan’s hospital stays began. I wish she were strong enough to come home; but she’ll need time in acute rehab – hopefully now without being disrupted by any setbacks. We’re arranging to transfer her back to Long Beach tomorrow, so that’s one step closer to home. Thanks to everyone for praying tonight and to God for answering.

ICU day 8

Cleared to leave ICU today, Susan moved to the neuro floor this evening when a bed became available. She’s penciled in for surgery tomorrow as an add-on to a full calendar; and unless there’s a reasonably early opening, they’ll defer to Friday.

The neuro team decided to internalize her lower shunt line by sterilizing and tucking it away under her skin. It’s actually still blocked and not functioning, so this offers the least amount of disturbance. If she needs a new shunt in the future, they’ll remove the old one during that surgery. I also consented with the vascular surgery team to implant another power-port catheter. They expect a routine procedure.

Susan has been making great progress in recovery, so we’re hoping the trend continues when she gets to acute rehab. Depending on the timing of surgery and her status afterward, she could be transferred on the weekend, perhaps as soon as Friday.

It’s been wonderful to see how some of the ICU nurses who’ve attended to Susan over the past week like to come in and visit her. They’re enthralled with her joy, her smile, and her sweet nature. Tonight, Paolo told Susan she’s the sweetest lady ever, “no joke.” Earlier, Stella said how amazed and thrilled they are to have a GBM patient who’s nearly a six-year survivor and who’s making headway towards home. Too often, brain cancer patients come to ICU with advanced disease and poor outcomes. It must be satisfying to have patients with good results.

I wrote recently about fearing God for his power and enjoying him for his love. Today I read a devotional comparing the fear of the Lord to our natural fears. There’s a proper fear of the Lord in the sense of respect, like being afraid of offending your parents or another person you admire. We must learn to fear God; but the fear of the Lord is unavoidable the better we know him.

Of our many fears that don’t require much learning, perhaps our greatest is death. It makes sense. We were meant to live. The idea of “game over” is scary. But knowing God – and properly fearing him – means our fears have context. Just as everything we place under his dominion becomes rightly ordered, so does the realm of fear.

If God himself becomes our greatest fear, all others become lesser, even small. Even death. As odd as it sounds, the fear of the Lord becomes our ultimate comfort. Like a frightened child who runs into the arms of a strong and loving father, each of us can take refuge in the shadow of the Almighty, where he welcomes us.

I have small fears about Susan’s surgery tomorrow, about more complications, about her dying. We gave them tonight to the one we fear more. We asked God to guide the surgeons’ eyes and minds and hands, and we asked him for a good outcome. We thanked him for his love and faithfulness, and told him we appreciate his power and his peace. That’s it. It feels good to leave our fears with God because he can handle them better than we can.

ICU day 6

Susan’s recovery in ICU continued today following a restful night. When her heart rate dropped to the low 40s this morning, her nurse was concerned that hydrocephalus had returned and requested a CT scan. The results were actually outstanding – no hydrocephalus and less blood. The doctors were wondering where it all went; but they might understand if they knew how many people have been praying. Now we can say prayers of thanks for such good results. The scan still shows some swelling, so Susan will need to remain on elevated steroids for now.

The neurosurgery and vascular surgery teams are coordinating their plans, which may still happen together in the OR. The neurosurgeons will sterilize and internalize the drain they removed on Friday rather than either pull or replace the entire shunt. With her VP shunt enclosed but not operating, it’s won’t become clogged again with clotting blood in the short term, and won’t need to be completely re-implanted if she needs it in the longer term.

Next, the vascular surgeons will revise Susan’s power port either during the same procedure tomorrow or perhaps Wednesday, if the shunt procedure happens at bedside.

Meanwhile, back to brain cancer treatment, Dr Nghiemphu visited us today and is both pleased with Susan's status and eager for her to resume chemotherapy when she can handle it. We're bumping next week's scheduled MRI and oncology visit to allow more time to heal, so we'll get back to clinic on April 10th. We'll be prepared to begin chemo again if necessary. 

In her occupational therapy session today, Susan showed good strength in her legs and improvement in her arms – encouraging signs as Susan edges back to rehabilitation. The therapists here will recommend acute rehab once again, so we hope insurance approvals will not be delayed following her prior false start.

We thank God for Susan’s progress in recovery, for her hemorrhage and hydrocephalus resolving so well, and for God’s favor on us during this episode.

ICU day 5

Sunday in ICU was another restful one for Susan, who didn’t fall asleep until 4am again. Since her wakefulness might be due to round-the-clock interruptions for neuro exams, meds, and blood tests (ya think?), tonight she’ll be on “sleep hygiene.” That means they’ll keep interruptions to a minimum. I like to make fun; but they really do a great job here of balancing treatment vs patient needs. Hopefully, she’ll get better rest. 

To add to Susan’s progressing recovery, our buddy Chris removed her EEG electrodes today. We’re now well-acquainted with the EEG guy who set up her first EEG in December, her second in February, and removed the third today. Another hospital pal – he’s one of ten EEG guys here, so having him get Susan again is kind of a kick. Also today her CSF drain started working, the previously clogged line they extracted on Friday. I’m not sure why it’s working now, but that’s okay. I’m also not sure how getting her brain drain working will affect timing for surgery – I just know there’s no word yet on when she’ll go to the OR. 

Yesterday was our 28^th anniversary, so we celebrated the way you do in ICU, without flowers. Whatever. We just go with it. It’s ironic to be here at UCLA since my school calendar when I attended here dictated our wedding date. We felt the fall of 1984 would be too soon to pull off the wedding, and were too eager to wait until the summer of 1985. March 23, 1985 followed my final exams and commenced spring break, so that was the day. 

Sometimes I’ll hear a guy refer to his wife as his “ball and chain.” My version of that sad and foolish view is that Susan and I have a ball being together and treasure a long chain of experiences as husband and wife. We thank God often for the gift of life and for the gift of each other. We sensed his hand in bringing us together and in calling us to spend our lives as one. He’s blessed me beyond belief with Susan.

It’s been fun to see how the staff here reacts to us. Since healthy, long-lasting marriages now are sadly rare in our culture, people are encouraged to see a couple who actually are in love, happy, stable, and all of that. To us, it’s neither odd nor complicated make a sincere commitment in marriage and keep it, so we’re glad to share what that’s like. I’m thankful I could wish Susan a happy anniversary yesterday. I remember hoping to reach our 25^th, so it’s wonderful that we’ve banked even several more years.