ICU sequel, day 3

Today Susan’s status remained about the same overall, although her blood pressure has normalized, so evidently the proper steroid dose helped. Even so, the attending physician said her seizure activity continues. The ICU staff is focused on stabilizing her with a batch of meds and continues to watch for improvement. Under different circumstances, they might use a procedure with deep sedation for several days to break the seizure cycle; but in Susan’s case they’re concerned she might lapse into a coma.

Dental hygiene

She’s still sleeping much of the day and is sometimes more responsive than others during her few waking phases. One highlight of the day today was having the nurse brush Susan’s teeth. I’m sure it felt good; and the nurse used a special toothbrush attached to a suction tube that reminded me of Susan’s dental hygiene practice.

We’ve been reading daily from “Streams in the Desert,” the remarkable century-old collection of devotionals written by people who’ve gone through stuff knowing God’s grace. Ken and Lisa Korver blessed us greatly with it nearly six years ago as our journey began. I’ve seldom read anything like it that can touch a tender area related to our trials and soothe it at the same time.

Today's reading is based on Matthew 10:27 and says what God tells us in the darkness we should speak in the light. The darkness of our trials affords a unique opportunity for God to speak comfort and peace directly into our circumstances, whispered from his heart into our ears. Proclaiming that comfort to others not only helps them, it helps us, and it means our suffering is not wasted. I guess that’s why I write.

Steroid reset

Seizure activity continued today as Susan cycled through a couple of brief, waking periods and otherwise slept deeply. She’s on four anti-epileptic meds to stabilize her, which the attending neurosurgeon believes are starting to work.

A lucid moment.

Last night when I asked about her steroid dose, I was alarmed to learn she was on just 2mg of Decadron instead of the expected 16mg to 24mg – I’m not sure how far down her taper schedule had gotten in Long Beach. But for Decadron, that’s a big drop. We don’t know at which point the error occurred, at her transfer to from rehab to ICU in Long Beach or from Long Beach to UCLA, but the drastic change likely contributed to some of the brain swelling, seizures and low blood pressure we’ve been seeing.

Even so, I wouldn’t attribute all of her symptoms to the steroid drop since her status had been declining earlier. The plan now is to wait 48 hours from starting her proper dose to re-evaluate her status. Her MRI results showed that her bleed has indeed resolved nicely and her tumor is mostly stable. We’ll wait a few days before making decisions about her treatment options.

Needing care in ICU

After arriving at UCLA last night, Susan had a neuro exam that led to her most lucid moments of the day. She was alert, responsive and more conversant. We took advantage and made calls to family who were grateful to hear her voice.

A CT scan overnight confirmed there was no new brain hemorrhage. Evidently, the staff at Long Beach had seen existing blood from her event last month and thought it was new – an example of her need to be at UCLA for continuity. The new scan shows the bleed actually has resolved quite a bit, so that’s one less complication.

Today, Susan has been mostly unresponsive and sleeping. They connected a continuous EEG this morning; and she actually had a seizure event during an exam by the neuro team. The fact that she’s been cycling between cloudy and lucid moments daily makes her neuro-oncologist suspect this seizure activity has been going on for a while. It may be caused by general brain trauma or by tumor growth, so an MRI this evening should provide a vital update.

We’ve been concerned since yesterday about low blood pressure; but Susan’s responded to meds that push it up. Meanwhile, she had a feeding tube inserted since seizures can affect her ability to swallow. The ICU staff needed another vein in addition to her port catheter to administer meds, so this afternoon they inserted a central line. In spite of so much turmoil, she continues to fight.

We’ve had some amazing encounters with godly and loving people lately. I was enfolded by the usual flurry of hugs and prayers at church on Sunday. Yesterday, a couple of Long Beach doctors went out of their way to offer kind words and advice. Her ICU nurse there truly ministered to us with loving care and compassion, making a hard day easier. When we arrived at UCLA, the ICU staff here greeted us warmly, with both joy and concern. Susan was last here over a week and a half ago; but the charge nurse came in and said she’d thought of Susan just that morning and prayed for her. We’re so blessed.

I had remarkable experience yesterday as the ambulance crew readied Susan for transfer from Long Beach Memorial to UCLA. I left the seventh floor ICU and encountered a blur of images on my way out. I passed the East ICU wing where I was with Susan the morning of July 5, 2007, after her first brain surgery. Brimming with memory of that day, I descended the stairway and passed the waiting room a floor below where I’d spent the night of the 4th on a lobby seat not designed for sleeping. 

Continuing down the stairwell, I passed the floor where Susan had her mastectomy in 2006 and the floor of the neuro unit where she spent several weeks in 2007 after ICU and then a short stint later in 2008 with back surgery. I passed the cardiac floor where I stayed a few days in early 2011 after having fleeting chest pains chalked up to stress.

I passed the nuclear medicine floor where I had been tested for infertility in 1988 and got disheartening news before we prayed and conceived our girl Lexie. Then I passed the floor of the birthing center where Lexie and Austin came into the world and went on display behind baby gallery glass.

Finally, I descended the extra-long flights to the first floor and passed through the hallway toward the lobby. To the left was the chapel where 20+ people gathered to pray during Susan’s July 4th brain surgery. Then I entered the large waiting area, a site of vigils, laughs and prayers with loved ones and sober conversations with neurosurgeons. I thought of the ER down the hall and our visits there for everything from Austin’s broken wrist to my gall bladder attacks to Susan’s urgent brain tumor events.

Recalling them in the very places they happened, I realized that single building had hosted some of the most significant events in our family’s experience. I took in the perspective and its fullness, which seemed to happen fluidly, floor by floor, revealed by an unseen hand. I realized God can display a catalog of life’s events because he’s been with us for each one. “Teach us to number our days that we may gain a heart of wisdom.” Psalm 90:12

Transferring to UCLA

We've arranged for Susan to transfer to ICU at UCLA for continuity of care. The neuro team at Long Beach is also highly skilled and caring, but they don't have the full set of her records needed to make the best, most informed decisions.

She's had two CT scans and an EEG since yesterday and had her shunt tapped this morning to test spinal fluid. The new brain hemorrhage is serious but not overwhelming, so she's tired and in stable condition.

We have comfort in her returning to the doctors and staff at UCLA who know her well, and even more profound comfort in God's presence with us during a difficult time. We appreciate your prayers.

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In ICU with another hemorrhage

When Susan's status declined again this afternoon, a CT scan revealed what appears to be a new hemorrhage. She was moved to ICU from the rehab unit and will be transferred back to UCLA most likely tomorrow. Thank you for praying.

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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.

ICU day 4

Today has been a quiet day for Susan, who got some needed rest after being awake for most of the night – probably because of an increased steroid dose. I, on the other hand, did not increase my steroid dose and got some good chunks of sleep in while splayed out in the recliner next to Susan’s bed.

We enjoyed a late-morning visit from Susan’s dad, brother and wife, and pastor. We prayed and chatted and prayed again. I filled them in on the latest events and plans and identified some of her tubes and medical bits. They were relieved to see her looking good and alert.

Later, Susan’s wonderful nurse arranged for a visit from a therapy dog named Bella, who arrived after I stepped out for lunch. Susan had been deep asleep, but fully awoke and interacted with Bella. It’s been hard for Susan to wake up at times, so this was a good sign. She loved having the dog visit and petting her soft fur. 

The level of care in ICU is amazing. There are just two patients to each highly-skilled nurse, who is stationed to observe both at once. Each of Susan’s nurses has been responsive, sharp, and caring, a fact that put me at ease right away when she was admitted to the unit in such need. To have a quiet weekend under their care after such an active first several days feels like progress.

The other day I thought about the nature of God, grateful that he is both supremely loving and all-powerful. If he were so loving but lacked power, I suppose he’d be the most cuddly wimp we could know. If he were all-powerful but lacked love, his terror would consume us – if we were allowed to live at all. I realized it’s right to fear God for his power and enjoy him for his love, and to thank him that he’s complete in both. He’s been that for us this week.

Stabilizing, waiting

We’re glad the intensity of the past several days has lifted as Susan remains under watch in ICU. The big events today were a plan, a report, and a test. First, the neurosurgery team will observe her status this weekend since she hasn’t had any fluid drained from her brain since Wednesday. They’re watching in case her status declines, which will prompt them to place an external drain and relieve pressure. In any case, they’re talking about doing surgery Monday or Tuesday to remove non-working hardware and implant a new shunt and power port. 

Second, I learned that yesterday’s MRI showed no additional bleeding, but did show quite a bit of blood, swelling, and increased contrast to indicate tumor growth. But according to Susan’s neuro-oncologist, it’s hard to say how much is tumor growth vs contrast solution reacting to blood. No matter what, Dr. Nghiemphu is eager to restart chemotherapy as soon as Susan is able. 

Susan's pal Brobee for hand therapy.

Third, Susan had about a dozen leads placed into her scalp for a continuous EEG that monitors her brain waves for seizure activity. She handled the painful procedure like a champ and now has a lovely crown of electrodes. She’s had some spacey episodes that seem seizure-like, but none where she’s been unresponsive as with last December. The EEG will record all seizure activity observed and unobserved, so we’ll know those results later.

As of now it looks like Susan will be in ICU until the middle of next week or at least a night or two after her shunt+catheter surgery. She’ll probably have a day or two in transition to the neuro ward and then be discharged. Hopefully she can return to acute rehab by Easter weekend.  

We’re thankful for a new appreciation of our resources in the Lord. His peace and strength; his love, faithfulness, and powerful hope have been ours in full measure this week. At a hospital with 510 beds where perhaps 509 other people are enduring their own episodes of medical crisis, it’s amazing that God cares for each of them as much as us, while none of his attention or supply for us is diminished. And we’re just 510 people in a Los Angeles hospital out of 7 billion on the planet whom he loves perfectly as well. God is so huge. We’re thankful for how he cares for us.

Shunt procedure 2

It's been a difficult couple of days for Susan. Having two identical tubes located in the same area near her right clavicle caused the neurosurgery team to make a mistake yesterday. Thinking her recently-implanted VP shunt tube was routed to the right of her port catheter tube, they cut the wrong one when trying to extract the shunt. As a result, IV access through her port was literally cut off, causing the saline drip to infiltrate and swell the surrounding tissue. Meanwhile, the blocked shunt tube remained intact.

The good news is it apparently caused no other problems than disturbing the tissue and forcing a new sequence of procedures. Late last night they put in a temporary central line to supply needed IV access. New imaging shows the shunt tube crosses to the left of the catheter line and extends down along the center of her chest wall. This evening the neurosurgery team is extracting the shunt tube so Susan’s CSF can drain externally as intended. Next, the vascular surgeon who implanted her port catheter will remove it as well, perhaps tonight.

Once her brain hemorrhage and hydrocephalus properly stabilize, she’ll have a two-part surgery where the neurosurgery team will implant a new VP shunt, then the vascular surgery team will follow and implant a new port catheter. Such a deal.

Meanwhile, Susan had an MRI this morning for a detailed view of her brain bleed. I haven’t heard the radiologist’s report yet, but since she’s been mostly stable, I suspect the bleed has stabilized also. She’s definitely several notches below normal with spotty orientation and hit-or-miss responsiveness.

I had a surprising report from the neurosurgeon who tapped her shunt yesterday – she woke up before he even tapped it, which blows my mind. That means she went from deep, unresponsive sleep to being awake and alert regardless of having CSF drained to relieve pressure. That kind of sleep returned this afternoon, causing everyone to be concerned again about her status until she was able to be roused. Perhaps this week’s events have just made her neurologically unstable, hopefully just for now. We’ll know in time.

Being able to post updates on this blog and on Facebook has brought friends and family to respond in prayer and with encouraging comments. I want you all to know how deeply we appreciate your care and prayers. A hemorrhage of any kind sounds scary; but learning Susan had a brain hemorrhage rattled me – even for the second time. Such news is never welcome.

But the hope and peace God provides are real and steel-strong for us. I can’t explain Susan’s brain tumor or her many complications or her nearly six years of survival. I can’t explain how we haven’t crumbled under it but for God and his catalog of mercies for us. You’re part of it, both as a source of blessing to us and as witnesses of God’s grace in spite of heavy circumstances. We love and thank the Living God and we love and thank you. Thank you for keeping Susan in prayer.

Shunt procedure update

The procedure finished, so Susan's shunt is now draining externally. Her CSF from the brain is bright red instead of the usual yellow-gold due to the bleed.

She has quite a bit of swelling near the site. They thought at first it was fluid from her abdomen flowing upward through the part of the lower shunt they couldn't remove and had to cut, but the large amount of swelling didn't make sense.

Now they suspect the needle leading into her port catheter was dislodged during the procedure, causing saline going into the line to seep into the surrounding tissue. They'll shoot a quick x-ray to see if that's true. If so, they'll place a new needle and continue using her port. if not, it's more complicated. Either way, later tonight she'll have an MRI instead of a CT scan for a detailed look at the bleed.

Susan is awake and alert, and is the sweetest person in the whole world, I tell you. She's clever, too. Doctor, who Susan just called "honey": "How many fingers am I holding up?" Susan, who either has no idea how many or just can't get the word out: "That many."

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Shunt procedure

The neurosurgery team is doing a procedure to pull the lower part of her shunt near her clavicle so they can remove its blockage and it can drain blood and CSF externally. We pray for no complications. Her symptoms are still good. 

Our neuro-oncologist Dr Nghiemphu showed me this morning's CT scan and new pockets of blood in three areas: tumor cavity, ventricles, and left occipital brain.  The first two are not too worrisome since they're open spaces; but the brain area could have visual or cognitive effect. Time will tell.  

It's possible the hemorrhage actually caused the hydrocephalus if bleeding began, clotted in the shunt, and blocked the flow of fluid. So two separate complications may be cause and effect. 

Dr Nghiemphu forewarned me that whatever cognitive hit the bleed may have caused may take a long time to resolve or may not resolve at all. She said hemorrhages are troublesome; and we don't know how this latest insult to Susan's brain may have damaged it. So far she seems okay to me since she woke up. Let's pray for healing and restoration. 

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed." Psalm 57:1

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Quick help in ICU

I'm greatly encouraged that Susan is awake, alert, and even laughing here in ICU. The neuro team tapped her shunt and drained off about 10 cc's of CSF, enough to lift the pressure from hydrocephalus and bleeding. They'll test the fluid for infection also.

She's been swarmed for the past couple of hours here with top-notch nurses setting her up for treatment and observation. They've administered several things to enhance clotting against her brain hemorrhage - blood plasma, blood clotting factor 9, and vitamin K.

Her CT scan this morning was thankfully stable vs last night. She'll have another at about 6 pm. These ICU people are awesome.

Meanwhile, with the return of hydrocephalus, they'll evaluate her VP shunt after suspecting a blockage in the distal or lower portion. That may require another surgery; but it's too soon to know.

A hemorrhage and hydrocephalus are a lot to deal with at once; but we're relieved to have a positive turn at last. We're secure in the peace of God and grateful for so many prayers on our behalf. Thank you.

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Brain hemorrhage

We learned this morning that Susan has had a brain hemorrhage. She had a CT scan around midnight after arriving earlier at UCLA from acute rehab in Long Beach. The neurosurgery resident said they observed discreet areas of bleeding and have ordered a second CT scan to check its progress. She’ll have an MRI soon as well for greater detail and will be moved to ICU.

The priority is to stabilize her bleeding with a drug that counters the effect of Coumadin she had during her stay in rehab that was used to treat blood clots they discovered in both legs. Such a deal. Once she’s stable, they’ll decide next steps.

Yesterday afternoon I got concerned when she became discomforted and verbally unresponsive, though awake and mostly alert. Since about 2am, she’s been sleeping and mostly unresponsive.

Susan had a brain bleed a little over four years ago that brought her to ICU here with preparations for surgery, but the bleed resolved on its own. Please pray for another such outcome.  

Have mercy on me, my God, have mercy on me, for in you I take refuge.
I will take refuge in the shadow of your wings until the disaster has passed.

I cry out to God Most High, to God, who vindicates me.
He sends from heaven and saves me, rebuking those who hotly pursue me — God sends forth his love and his faithfulness. Psalm 57:1-3

Revisiting a slump

Although I was able to coax a few smiles from Susan yesterday, much of the day she didn't feel well and had several vomiting spells. Her cognitive and physical weakness persisted. She could offer only delayed responses and one-word answers.

Her neuro-oncologist confirmed she needs to see the neurosurgery team at UCLA as soon as reasonably possible to evaluate her shunt. With more vomiting today and no other improvement, the UCLA neurosurgery team agrees and wants her admitted to the hospital. Susan will be transferred once doctors finalize the details and a bed is available.

We're probably in for an ER-type experience except her room where we wait in Long Beach is larger and the ride to UCLA's 6th floor neuro unit is longer. Susan may be in for another multi-day stay to diagnose, treat, and observe, hopefully with a mere shunt adjustment.

From there the good therapists in Long Beach are eager for her to return and pick up acute rehab without anything working against her. The journey continues. We have peace.

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A mid-week slump

After a report of Susan vomiting on Tuesday afternoon during therapy got my attention, two more episodes on Wednesday gave me concern. Another neurological hit could mean a shunt failure, brain bleeding, or several other serious but less urgent problems. She was less talkative on Tuesday evening, needed maximum queuing during therapy, and had been staring at her food rather than feeding herself. These are not good signs. 

The attending physician in rehab ordered a brain CT scan Wednesday, which thankfully appeared to rule out our most serious concerns. But as Susan’s advocate, I wasn’t satisfied. While I didn’t doubt the LBMMC radiologist’s opinion of that scan, I knew it would be more meaningful when compared with the others recently done at UCLA. I requested a CD copy, picked it up Thursday morning, and delivered it to Dr. Nghiemphu at UCLA. She emailed me later to say there’s no remarkable difference between it and Susan’s prior scans, but she’d have the neurosurgeon view it as well. 

With good news confirmed, we still didn’t have anything actionable for Susan’s symptoms. Fortunately, she’s had no anti-nausea meds since Wednesday night and no vomiting either. She still seemed affected to me last night, but maybe she was just tired. Nurses reported a good day in therapy. We’re left without knowing anything conclusive about her mid-week slump other than it seems to be resolving, so that’s good. She may be experiencing a residual effect from having a tube implanted in her brain, or perhaps from last month’s chemo. Or both. I’ve had to become uneasily comfortable not having all the answers. 

The plan is for Susan to come home next weekend, perhaps even Friday. We’ll take a half-day jaunt on Wednesday to UCLA for chemotherapy. Hopefully, she’ll be able to make the best of her remaining therapy hours and come home well enough for us to care for her safely here. 

Susan’s absence reminds me of 2008 when she was in rehab for three months. I think I miss her more now after just a week than I did then, perhaps because now I wonder what our home would be like without her when she goes to heaven. This is not a hopeless thought, just a hard one. My consolation comes when I see her again at her bedside, kissing her forehead and saying I love her. Being able to do that is actually a great gift, as though I’ve lost her and have the miraculous opportunity to see her again. I expect this will comfort me on the day I need it. 

Meanwhile, the Living God never slumbers or sleeps and is constantly working out his good purposes for us. Susan drank in these words from Psalm 57 when I read them to her last night: 

“Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed. I cry out to God Most High, to God, who fulfills his purpose for me. He sends from heaven and saves me, rebuking those who hotly pursue me; God sends his love and his faithfulness.” 

Susan usually can’t tell you what day it is, but she received God’s word for her, looked me in the eyes, paused a few moments, and said, “That’s perfect.”

Therapy is a good thing

After a few days ramping up and being evaluated, Susan had her first full day of physical, occupational, and speech therapies today. She was in good spirits this evening as she ate dinner during my visit after work. I’m not sure if I ever met anyone with a better disposition, more easy-going, less grumbly, more hopeful, and more patient than Susan. She just goes with it. I’d have tried a jailbreak or two by now if it were me. Not her. She’s calm, sweet, and majorly strong. 

As I speak of her strength of character, I was amazed on Saturday how much physical strength she’d gained just in the couple of days since she arrived. As Michelle the physical therapist did her evaluation, she tested for strength, flexibility, and initiation of movement as she led Susan to lie down and get up from a bed and then take a few steps with a walker. The strength is returning to Susan's right arm, so she's able to lift it more and grip things slightly.

The therapist is recommending she stay in acute rehab for three weeks, so if insurance is on board for that long, she’ll come home greatly improved. Meanwhile, we visit each day and look forward to her coming home. I can’t deny I’m relieved myself during this respite from the routine and responsibility of caring for her at home, so I’ll use the time for some caregiver rehab. I keep thinking about Psalm 54:4, “Surely God is my help; the Lord is the one who sustains me.” He’s got it all worked out.

Rehab begins

After several days to recover from surgery, Susan transferred to the rehab unit at LBMMC yesterday evening. She feels okay and will begin her physical, occupational, and speech therapy evaluations this morning, which will indicate how long she may stay.

She's slated for three to six hours of therapy daily. We're thankful for good progress and answered prayer.

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