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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Making progress

The 24 hours since Susan’s surgery have gone well. Her CT scan last night showed the VP shunt is placed properly with no bleeding in her brain. She’s had some pain at the surgery site, but only accepted pain meds once today. While some of her cognitive fog has lifted, she’s still quite weak physically.

Surgically speaking, she’s doing well enough that the neurosurgery resident is ready to release her from the hospital. Physically though, the therapist recommends she move to an acute rehab facility. Unable to stand on her own at all or with assistance for long, and unable to grip a walker with her right hand, we expect she’ll get stronger with 3-5 days of aggressive therapy so she can transition home. This afternoon, we met with the clinical social worker who’s making the arrangements.

Later, I went across the street to the old hospital to look around and buy a t-shirt at the health sciences student store. Near the west elevators I ran into Dr. Bergsneider and Dr. Shafa, both neurosurgeons, as they were leaving for the day. I thanked Dr. Bergsneider for his good work with Susan’s surgery yesterday and then I re-acquainted myself with Dr. Shafa, who happens to help my mother monitor her meningioma. It’s a benign brain tumor diagnosed about 30 years ago, but that's another story. 

With that chance meeting, we’re thankful to be on the neurosurgery friends and family plan at UCLA and grateful for all the caring doctors and nurses who helped us this week. We’re especially glad Susan is making progress and can get on with the next phase of recovery.

More hospital observations 
When you walk up to the cafeteria cashier lady with a hot beverage while she’s coughing but she needs to know what kind of hot beverage you’re buying so she stops and says “Coffee?” and you say, “No, but you are,” then that’s kind of funny because you really do have coffee.

When a social worker lady you don’t know walks into your wife’s room while she’s sleeping and looks at you and asks if you’re your wife’s son and you tell her you’re her husband and the social worker lady says the son asked for a letter and you say you’re not the son and you tell the social worker lady she must have the wrong room and then the social worker lady turns away with a look of disbelief as she mutters something about talking to the nurse and then you ask her if she’s giving out letters and she laughs as she’s leaving – when that happens, you turn to your now-awake wife and say, “I was hoping she’d give me a letter. They’re expensive at UCLA.”

Successful surgery

Susan's surgery concluded a short time ago with no complications. The neurosurgeon quipped it was boring, which is certainly better than the alternative. She's doing well and will return to her room in a while. We thank God for a smooth procedure and everyone for your prayers.

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In surgery

Susan went to the OR a short while ago for surgery to plant the VP shunt and should be back upstairs by 3:30 or 4pm. She had nausea and vomiting earlier but was better after meds. She's really sleepy and didn't need any pre-op narcotics. I didn't either.

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On stand-by

Susan rested well overnight and is on stand-by for surgery. The schedule is fluid; but they're looking at an OR opening around 1pm.

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Prepped for a VP shunt

I just signed the consent forms for Susan’s procedure tomorrow to have Dr. Bergsneider implant a VP shunt. The staff did a few more pre-op tests since yesterday, including a lumbar puncture to draw cerebrospinal fluid (CSF) and check for infection (it’s negative). Since her procedure is being added to a full schedule, the earliest we’ll know the timing will be 8am. When an operating room becomes available due to something like a no-show or medical complication, the team will swoop in and get started. We’re likely to have about an hour’s notice any time during the day.

Meanwhile, Susan is stable today but weaker in her right arm. It’s really a flopsy item now. Her mood is mellow and pleasant. She’s great at just going with the flow. She’s getting a lot of rest and is eating well. I’ll help her get a good run at dinner since she’ll be without food or water after midnight.

The neurosurgery resident gave me the run-down – bear with me since I geek out on Susan’s medical stuff. The big term is a ventriculoperitoneal shunt, but VP works fine for me. It involves one tube or catheter connected to the brain cavity, another connected to the abdomen, and a small pump in between.

They’ll make an incision in the scalp and drill a small hole in the skull over the right side of Susan’s brain to implant the tube in her ventricle, which they’ll run under the scalp behind the ear where they’ll locate the pump. The pump is a small device that can be adjusted magnetically from outside the scalp. Susan’s version will be MRI compatible.

They’ll connect the peritoneal tube to the pump and guide it around the neck and down the chest wall, under the skin between the fat and muscle layers. They’ll make another incision in her abdomen and connect the tube so it drains into the peritoneum, which is a membrane that covers abdominal organs and is a conduit for blood and lymph vessels and nerves. CSF can be drained there and safely absorbed. Thus endeth today’s lesson. Please don’t try this at home.

The VP shunt replaces Susan’s LP (lumbar-peritoneal) shunt she’s had since late 2007, which will now remain in quiet retirement. LP shunts drain CSF more generally from the spinal column that connects to the brain, so having the VP shunt provides more strategic placement and drainage. Like any plumbing, the goal of a shunt is to flow easily for a lifetime; but sometimes proteins can build up and clog the lines. That may be what happened in Susan’s case.

There are some risks to this procedure for Susan, so we appreciate your prayers. Aside from the usual risks for infection with surgery, general anesthesia for someone on long-term steroids can be complicated. Since steroids artificially substitute what the body would produce, there’s a risk that adrenaline normally kicked in to maintain blood pressure during the stress of surgery may not happen for Susan. The surgery team is aware of this complication and will be prepared to handle it.

We’re not really worried about these risks in particular or worried in general. We trust God completely with the outcome of surgery tomorrow and Susan’s brain tumor journey overall. That said, we welcome your prayers. Our desire is to see God’s purposes established in and through our lives in whatever way that pleases him. This was a point of breakthrough in Susan’s spiritual walk during the time before cancer came into our lives. She surrendered to God with the desire that he use her life to bring glory to him.

By the way, that doesn’t mean he zapped her with cancer – the Living God gives good gifts. But it does mean he’s welcome to use any circumstance of our fallen world to demonstrate his grace in our lives. Approaching six years in brain tumor world, that grace with his peace and a host of other gifts have become fused into our experience for good. We own them. We love him for it. 

This is the precious product of going through hard stuff with an expectation that such seasons can in fact be fruitful. It’s his grace that even gave us that expectation in the first place. We still don’t know what it all means exactly, but we’re confident in God working it out. My spirit sings “He can work it out.” Can I get an amen? We have the greatest guide and companion imaginable. He made us and we are his.

Surgery Monday

Information has been hard to come by today, so we’ve done a lot of waiting. The hospital launched a digital charting system at midnight that will streamline patient care in lots of ways, like making a doctor’s order instantly available instead of needing to live in a folder until someone finds and acts on it. 

The future state sounds fantastic; though getting there has been a challenge for everyone – technicians dealing with bugs, staff having their familiar methods disrupted while double-checking details to maintain patient care, and patients and families waiting through extra delays during a process that’s already complicated and time-consuming.

For us, it was a long evening in the ER waiting for a bed upstairs, a long night upstairs waiting for meds, and a long day waiting to speak to doctors about what they’ve learned and what they’re planning. Being loopy from lack of sleep didn’t help me be more patient. Fortunately, now we know Susan will have surgery on Monday to replace her shunt and resolve her hydrocephalus, the fluid build-up in her brain.
 
The scans seem to show a gradual build up of fluid over some time, though her recent tumor growth may have increased it. With her L-P shunt in place for over five years, we don’t know how long it’s been working poorly; but now it needs attention. Dr Bergsneider may choose to implant a ventricular (V-P) shunt this time, depending on how the fluid is collecting in her brain. Susan started some pre-op activities this afternoon: chest x-ray, blood work, and EKG. She also had an EEG to check her brain activity for seizures and follow up on her hospitalization over Christmas.

It’s a relief to come to the action phase of our visit, and a bigger relief to know Susan’s problem itself is actionable. I’m well aware we could have been facing the same symptoms due to a progressive tumor that’s not responding to treatment. We’re glad that’s not our battle today. 

In spite of Susan’s continued physical weakness and brain burden, she’s still sweet as ever in her wakeful times. We both have such peace; we know it’s from God and thank him for it. I found another beautiful nugget in his word this week: “Surely God is my help; the Lord is the one who sustains.” (Psalm 54:4) We’re grateful as always for everyone’s prayers and expressions of care for us.

Another hospital observation:

When you need to renew your 24-hour permit in the parking structure below the 200 Building because you know from experience you will get a ticket when it expires, and you get in the elevator and press the “B1” button and the doors close but nothing happens and you press it again and again and still nothing happens and then the elevator goes to the 6^th floor and stops with the doors closed and none of the buttons you push are working and you become just a bit concerned, and then you press the “Emergency Help” button and the elevator voice lady asks if you’re stuck in an elevator and you say “yes” and then she asks if you need medical help and you say “Probably not for several hours” and she laughs and asks if you tried to go back to the first floor then you push “1” and the elevator starts moving while the elevator voice lady tells you it’s Saturday and the building is closed and elevator access is restricted, and then you thank the nice elevator voice lady as the doors open on back on the 1^st floor where you started in an apparently closed building – when that happens, you walk instead to the stairway to go renew your 24-hour permit and say to yourself, “What a silly elevator.”

Hospital observations

• It’s best not to have an emergency medical need on the evening an entire hospital moves to an all-new, digital charting system. 
• If “Real Stories of the ER” were a true reality TV program, it would be 8-10 hours viewing one 12-foot wall in an exam room. Of course, they’d have to air it in one-hour installments. And you’d beg for a commercial.
• A blanket warmer is one of the best things there is.
• The attending ER physician shared with us that his father also had GBM 20 years ago. Another compassionate brain buddy. We bonded.
• Hospital time is not of this world. I’m nearly 50 in human years and probably about 34 in hospital years. Maybe younger.
• If you discover the hospital unit pharmacy doesn’t stock the oral chemotherapy capsules your wife needs even though you filled the order at the oncology clinic next door and it’s after 11:30pm because you’ve been in ER all day, you need to drive home and get them.
• If it’s after 1:00am and the nurse tells you she needs to deliver the oral chemotherapy capsules you picked up at home to the hospital unit pharmacy so they can dispense them back to you, and then she recommends you give the hospital unit pharmacy only several doses and keep the rest, you should do that.
• If you wake up in the hospital recliner and realize you’ve fallen asleep because it’s the middle of the night and you’ve been in the ER all day and then you realize the hospital unit pharmacy hasn’t dispensed the chemotherapy capsules you drove home to get for them at midnight, and then you learn they’re not authorized to dispense chemotherapy capsules without orders from an oncologist and they don’t have orders from an oncologist because it’s the middle of the night, you should get your secret stash of chemotherapy capsules and give your wife her meds and tell yourself it’s okay to break lots of hospital rules because it’s after 5:00am and it’s the right thing to do, doggone it. That’s about all I have to say about that.
• Waiting in a hospital room for the team of specialists to make rounds so you can find out what they think is going on with your wife and how they plan to treat her is kind of like being on restriction.

To ER for hydrocephalus

Our caregiver Jackie alerted me this morning that Susan was quite weak on her right side and having trouble with speech and responsiveness among other things. After speaking with her neuro-oncologist, I arranged to leave work and bring Susan to the ER at UCLA. Dr Nghiemphu conferred with Dr Bergsneider, the neurosurgeon who planted her L-P shunt in 2007. He's ready to replace it today if necessary. 

It seems we've been leading up to this. While we were here in clinic for chemo on Wednesday, Dr Nghiemphu arranged for a CT scan of the brain to check the status of hydrocephalus we'd observed the prior week along with her tumor growth. It appeared stable (not worse) on the CT, but seemed troublesome enough to be causing Susan's recent symptoms. We then scheduled to see Dr Bergsneider next week so he could evaluate the shunt - but that timetable has definitely advanced. It's possible her tumor growth triggered the hydrocephalus and the shunt isn't draining the excess fluid like it should. It's also possible the tumor or something else is at work, a more complicated idea. 

For now, we're in the familiar ER holding pattern after having an initial evaluation and another CT scan. Susan is very tired and is sort of a rag-doll on her right side. She can barely lift her arm and can't grip anything. Her right leg is similarly weak, while a slightly drooping mouth completes the affect. Words are hard to come by for her right now - but responses like "I love you too, honey bunny" trail off as sweetly as ever. She's in good spirits and peaceful; and right now, sleeping. I'll post more as things proceed.