(To)Day in the Life

I wake frequently at hotel-y place. 3am, 5am, etc. Humid. Air conditioner is loud and ineffective. Weird dreams. Also, my Dad, who stays with me, MIGHT talk in his sleep. And shout, occasionally.

7:30: up for good. Walk down the street to Starbucks. Go full throttle with a venti dark and a pumpkin scone.

7:45: into the ICU hospital room. Plunk down my crap in a little nook there. Plug in computer/phone to charge.

8:00-ish: talk to neuro doctor who comes in to check on things. He says he's fine with how things are looking and it's likely Ian will get his filter and be moved to a step-down floor "soon." (by now, we know that soon means at least this WEEK. But not necessarily today, or even tomorrow.) But that's "vascular's department and they will make that call."

8:30a-1p: Listen to nurse banter (fun!). Text folks. Answer emails. Play Candy Crush. Continuously scan Facebook. Color pages in my grown-up coloring book. Give Ian a "sponge bath." Have lunch in the hospital cafeteria. Wander around hospital gift shop, hoping something magically appears that wasn't there the last 15 times. (nope)

1-something: Ian has several scans of legs and arm and heart to be sure there are no other clots or heart issues. We are assured all is clear.

3:00: still waiting for one set of people to talk to another set of people to okay the filter and/or the move.

Ian: mostly sleeps. Does not eat, as he's "going to have a procedure soon" and cannot have food in him at that time ... so hasn't eaten since dinner last night. Nurses come in and out to check his drain(s), ask him if he's ok, give him meds.

4:10: Audrey calls to sob about not wanting to go to karate and being depressed and feeling sick and "what if I freak out at karate? and we're doing a project at school can I glue that book to it? and I just really don't like karate because I get hot and sweaty and when I know we're going I get all anxious about it at school (Depression is something real but not scary and something that would be understandable, but in your case, all of this sucks and you're sad about it, and that's normal. And you're going to karate tonight.) and Ezra said this house is boring and I told him mom was going to make him scrub toilets and he said, 'She's not even here.'"

He's right. I'm not.

Texts: How are you? How is Ian? Can I talk to him on the phone? Do you need anything? Is it okay to visit tonight?

4:45: still no food, still no procedure. Ian throws an (bed-ridden) hissy fit.

Rachel proceeds to have her first? meltdown this round, in the privacy of a depressing waiting room bathroom. The man is in mortal danger several times this summer and he's in a snit about a freaking sandwich?! I'm sitting in the ICU ALL DAY watching HIM watch absolutely NOTHING happen for 24 hours, while attempting to parent my children by phone. Yeah, I'm a little irritated, too, but what is there to do about it? Shall I shovel a cookie into him and tell the people they can wait on that procedure till tomorrow? (which, oh by the way, is either essential and life saving or it's not ... I can't get a clear picture on how interested they are in even DOING it, let alone when it might happen).

5:20: Snazzy suit doctor with gold (no kidding) stethoscope makes his daily check-in to make sure we have no infectious diseases. We don't.

5:30 Nurse comes in and explains all the phone calls she's made today trying to get this all taken care of (I've heard her do so. She's been trying. And she's very nice, and competent).

At this point we think it's unlikely they'd do the filter today anyway. So we've "fasted" a whole day to no end. Food still hasn't been approved, but we (and by "we," I mean the nursing staff and me and Ian) are likely to proceed with abandon at victuals by 6.

I'll sit here a few more hours, his dad will arrive, my dad will arrive, we'll all sit and watch him sleep some more, then head to our respective spots and do it all again tomorrow.

Except, I hope, for the meltdowns.

Even Less Sugar: Pummeled by Complications

I dread trotting over here to the blog. Because sometimes so much as happened since my last post, and I don't want to relive it to get it into print here ... but I also don't like to leave gaps in the story. So here's a brief summary of our current state of affairs:

The surgery to realign his scalp to cover the hole went well. They removed the bone flap, but the surgeon says that barring his participation extreme sports and ultimate fighting, it might not be necessary for him to wear a helmet out and about.

He had, post op, two drains in place: one to drain CSF and one to drain blood from the surgical site. Unfortunately the former drain did not prove effective, and so they re-installed a lumbar drain, which seems to be functioning as they expect. This is a SLOWER drain than before, when the air was getting sucked INto the head and into the brain.

Unfortunately all this lazy lying around stuff he's been doing has led to a blood clot in his lung. According to last night's nurse, the clot is REALLY big. Her eyes got big. Serious stuff.

From what I can piece together and keep learning from nurses and doctors as they pass through, here's the current course of treatment:

1. blood clots cannot go to the heart; if they do, heart attack, stroke? and ... delicately: Ian would not likely survive such an event

2. blood thinners are an immediate course of action (and were started immediately), however they hold their own risks, vis a vis bleeding following a surgery. Specifically, they'll need to monitor closely for a brain bleed(s) (which they are doing via regular CT scans).

3. thinners allow the body's blood to slowly break down the clot. And by slowly, we're talking MONTHS. In the meantime, it seriously, no kidding can't break apart/move to the heart. So now ...

4. it's likely he will have, perhaps today, more likely tomorrow, installed a filter. This is a procedure, not an operation, and is relatively standard in treating this situation. Again, however, there are risks, and Ian's condition accentuates those risks.

Ian: is relatively cognitively stable. He is mostly horizontal. He's had nothing to eat or drink since lunch yesterday, pending this possible procedure, so he's crabby about that.

Rachel: is pressing on. No vertigo today, thank God. I'm bunked at the Family House Shadyside across the street (for patients getting treatment from out of town, families of patients, etc - an amazing thing, really), which, albeit a pricey week-long solution is preferable to waiting room non-sleep. I can be in his room within five minutes and have access to a shower and bed.

Audrey & Ezra: are doing the Gramma Cha-Cha. I don't know "how" they are, REALLY, but for the moment, they are doing life the only way they can ... one day at a time.

Thanks to everyone for your help and continued prayers.

Below, a picture of the rather Frankenstein's monster-esque head scar. You have been warned.

Even Less Sugar: You can't keep sewing up a torn tarp.

Guys.    

Thursday morning, Ian will have yet another surgery. This (plastic) surgery procedure is to cover the incision site; currently the opening where the three lines meet on his head has been allowing spinal fluid to leak out and air to leak in, has not healed completely/properly/quickly enough, and is a potential source of infection. WE CAN'T HAVE THAT AGAIN.

So this is the LESS invasive option: 

They will make a very large, arced incision along the scalp. They will then PICK UP ALL THAT SKIN AND SHIFT IT COUNTER-CLOCKWISE AND PUT IT BACK DOWN. (Think of a secret decoder ring ... turning the top part on its axis). They will then have an open area (the shorted side) where they will graft skin from his THIGH. He will then have donor skin grafted to THAT spot. (I tried to find you some kind of picture or diagram to explain this, but I nearly hurled in the hunting so I stopped. I don't recommend Googling scalp surgery of any kind. Blerg.) *  Skin from his thigh will likely do well in the side opening left by the "scalp shift;" it should attach to that growing stuff and do its thing. 

The reason to do things THIS way is to fully cover the incision site with a sheet of skin already connected to a blood source: ie, the scalp is alive (with the sound of music) and will therefore re-attach and grow normally. (A skin graft over top of the whole site is not an option.) The good news is, the plastic surgeon has done many of these operations before, with good success. They happen often, actually. 

The bad news is that the tissue beneath the wound has been irradiated; it is dead and dying. That's a "good" thing for killing cancer, but a bad thing for wound healing. And the skin itself is delicate and damaged from the now THREE repeated incisions (2006 resection, June's biopsy and July's clean-out). 

As they open him up, they will be able to see the extent of the CSF leak. It's possible they will take muscle from the fascia of his cheek and use that to sew closed where the leak is happening (take a minute to digest the complexity of this stuff. Holy crap).

It's also possible they will need to remove the bone flap they didn't have to remove during the last operation; neurosurgery will make that determination after opening things up. If that occurs, it will make the plastic surgeon's work smoother (literally), but it will also mean Ian will need to wear a helmet for a while to protect the then exposed brain. **

After the surgery we'll know more, in terms of what of the above options were necessary, and what to look for in healing and recovery. There will likely be one or more drains in his head/face, and possibly a shunt. You can probably Google that without losing your lunch. 

He was much better Tuesday than he was Saturday. His tremor was nearly gone at lunch time, but it was back by dinner.  He spilled food all over himself and didn't realize it. He didn't initiate conversation, but he did understand and respond. The only thing he said on his own initiative Tuesday was, "I'm sorry I can't do stuff." But his cognition is better. As per his last CT scan (he gets one every morning), he has less air in the brain. But it's still there ... and I'm hoping it has a lot to do with the tremor and "off" nature. He's not walking well, either -- a heavy lean and very short shuffles. 

He doesn't remember the bowling ball cake. He doesn't remember that the kids were in to see him. He doesn't remember the staff on the floor coming in to sing Happy Birthday. Who knows how aware he really is of this coming surgery, but I'm sure if he were fully aware he'd say, "Sure, go for it. It's just skin," or something equally snarky. 

I miss my Ian. His body is there, but there's this terrible not-there-ness to him that is so hard to take. It was like this in 2011, I keep reminding myself; he relearned to walk and talk and eat. He can overcome this air in the brain thing and move forward.

Tomorrow: forward motion. 

* If this surgery does not "take," there is a more difficult and complex surgery as Plan B. Let's not get to Plan B, okay?

** Basically till he's healed back up, and then an option is to go BACK in and replace the bone piece with a chunk of something synthetic. ANOTHER head surgery with the potential for infection and CSF and air? but also ... no helmet. Anyway, we're not there yet, so let's not worry about Plan A.2, okay?

Even Less Sugar: Happy Flipping Birthday

I try to be positive.   

Sometimes it's really hard. 

Yesterday was one of those times.

I haven't been to the hospital in several days; I needed to get the house in order and the kids started at school. I needed to act as CEO of Maize, Inc. and create some routine and stability. And I did so.

But Audrey's stomach problems got worse, causing a panic attack at the bus stop and subsequent melt-down at the school when it was time to go to class... for a kid who LOVES school, seeing her sobbing in the office, begging me to take her home, the watching her wipe tears from her eyes and hugging her backpack as the principal gently led her to her classroom ... ripped my heart out.

She's my stuffer. That went to her stomach. Not a surprise. She's been in self-protection mode; she avoids Ian at home and really doesn't want to hear about him in his absence. She doesn't ask. 

Ezra still has his "issues" that make school challenging for him; he's antsy, tappy, hummy, clicky, sniffy, bored and a bit passive-aggressive. I got a teacher call on the second day of school.

He commented yesterday to all of us in the hospital room: "I'd rather you not die at the hospital. At home at least."

So it was a hard thing, visiting Ian. But it was his birthday. And it'd been a few weeks since the kids had seen him at all. 

I arrived with trepidation. Audrey had already been combating anxiety on the trip. Now we were surrounded by the unfamiliar and scary and cold. This is a world that has become common to me: not so, for my kids. Look at her: she's terrified. She can't pretend this isn't happening. She can't run away and she can't insulate. 

We entered the room. Ian was lying mostly prone, awake, but listless. His face did not light up at the sight of his wife or kids. He didn't speak first. His face was puffy. His skin was pale. His head wound is healing! But his speech was very slow. He's clearly tired... But this is a different tired. I've been thinking about how to describe it for two days, and all I can think is:

The demeanor of an elderly person you might visit in a nursing home, who may or may not recognize you or care that you're there to visit. Distant. Depressed. Vacant. Confused, but not even aware of the confusion.

I'm not saying he IS any of these things. It's just how he appears to me. He's been in the hospital more than a week, and I think I'd fooled myself into thinking that would mean steady forward progress. In fact, he's most certainly "worse" than he was when we arrived with his leaking head. 

The staff came in and sang happy birthday. We presented the cake we brought in. He ate cake dutifully, persevering through a significant and frustrating tremor: his one good hand shakes to a startling degree.

We stayed a few awkward and uncomfortable hours. Audrey had to leave the room as Ezra said pointedly: "What's going on with the tumor? Wow, he's really shaking now! Why does he have to lie flat? What does the tube do? Is he going to die here?" When she returned she did a typical "Rachel thing": curled up in a ball to sleep. She never made eye contact with him. She just can't. 

I get that.

Happy Birthday, Ian. Can we vow to not have next year's celebration in a hospital?

Even Less Sugar: Hon, I Think My Head Is Leaking 2.0: It goes to ELEVEN

Yesterday's bed-side lumbar drain was unsuccessful; the low level of fluid made that hard to determine, but as of today the fountain re-sprouted from his head. Tomorrow they need to re-do the drain, using a guided process via sedation plus x-ray/radiology/photon torpedoes. No one is at the hospital today to do it. (Naturally.)

I keep reminding myself that they didn't have us go directly to the ER when the leak started. So that must mean we should all remain calm, right?

RIGHT???

Sigh.

Even Less Sugar: Hon, I Think My Brain Is Leaking: 1.0

Dripping Water is kinda fun; it makes that "ploop" sound. *  

         It's a catchy song on a Chumbawumba album: Drip Drip Drip

It's verse in Proverbs that made us giggle when we met at New Wilmington Missionary Conference in 1994. Proverbs 19:13b: A nagging wife is like water going drip-drip-drip. (GNT)

It is NOT, however, something you want to come from your husband's HEAD.

At home.  At 9pm.

Sure enough, there was a little "sweat" spot on his pillow as he sat up from resting.

"Can you look at my head? It feels wet."  A wave of nausea washes over me as I recall our last episode.

The incision site is damp, the skin discolored, right at the joint. Right over the missing bone piece, where it split last time. I don gloves and dab the area with gauze.

Clear. Doesn't look open, or infected, just wet.

Is this how the infection started last time, but we didn't notice it? What if this is fluid under the scalp that is going to erupt? What if this is the tumor pushing up on the brain and shoving liquid out? What if this is "normal" for head wounds? What the heck?!

• Call the home health nurse line.

   "My husband's head is leaking from the incision site. He does not have a fever, he is alert and has no other symptoms. No headache, The liquid is clear and odorless."
   "We can get a nurse to you tomorrow morning. In the meantime, call the surgeon and see what they have to say."
   "When can the nurse be here?"
   "They usually make their calls around 8 to let you know when they're coming."

• Call surgeon's answering service, wait for a call back. Replenish "Oh-Sh*% Bag"

ring ring ... "How much is it leaking?" (How the hell do I quantify an amount of liquid on a pillow? The speed of liquid flow? I AM NOT A MEDICAL PROFESSIONAL.)

   "Uh, I don't know ... it made a baseball-sized wet spot on the pillow." [typical questions to assess whether infection is present]
   "Well, I would say if it soaks three gauze pads over night, you should get him to us right away. It could be spinal fluid or another infection. Or any fever or chills or neurological changes. If not we'll see him at his appointment Monday."

I'm not kidding. That's the way that phone call ended.

• Tape down a square of gauze. At Ian's demand, take a sleep aid and go to bed.

• Wake at 6:30a, when a neighbor decides to do some motorized lawn care. I reach over and touch the gauze. Soaked. He gets up to use the bathroom. I touch his pillow. Cold. Soaked. I remove the bandage. The site looks "normal" and dry.

We go about our morning, waiting on the 8a phone call. Ian feels good, and is preparing to have breakfast with a friend. I give him his antibiotic injection. My dad arrives on his way to work. His breakfast date arrives. I haven't heard yet, so I call the home health line again.

   "I was just wondering when someone can come and look at my husband's head."
   "Did you call the doctor last night? And what did he say? We can put him on the schedule for tomorrow ..."
   "I WAS UNDER THE IMPRESSION SOMEONE WAS GOING TO COME OUT THIS MORNING."
   "No, m'am, if the doctor told you to keep an eye on it and he has no other symptoms, you can do that and we can send someone out tomorrow."

Was I supposed to call them back last night, after I talked to the doctor? Did they REALLY not think I wanted a call in the morning from a nurse who could come and evaluate him? How could that NOT have been conveyed? 

So now here we are, the four of us, sitting in the living room, wondering what to do. Ian's stomach is growling. We've all looked at the incision site, which is not separated but slightly damp. Do I cover it to prevent infection? Does covering it harbor bacteria? What if the gauze sticks to the skin? I should protect it if he's going to leave the house. Should he leave the house?

• I put out a txt to all my nurse friends for advice. I take a picture of the incision. 

Ian decides he will forgo the bandage and go to breakfast; if he's going to have to go to the hospital, he might as well get a meal in first, he determines, and he feels fine. I give my hesitant approval and instruct his friend to go DIRECTLY to the ER if "anything bad" happen at the restaurant [I list all of the possibilities and transfer medical authority to a fellow church member and relatively new friend. Poor sap].

He stands up to put on his shoes, and the faucet returns; the drips are running down his bald head onto his ear. ["Give me something to take with me to catch the drips," he says.] We all take another look. Friend calls surgeon friend of his. We're now leaning heavily toward the "Cerebral Spinal Fluid" diagnosis, which albeit not life-threatening in itself does not bode well for a brain surgery patient with recent infection and an unhealed head wound.

Off to the (local) ER.

They swab to culture the liquid, they do a CT scan. They call the "big" hospital and are instructed to send him there.

We wait. And wait. It's now close to 4p, when he should receive his next antibiotic injection. I inform the nurse. She doesn't have a record of the medication in his chart, so she needs to know what it is. I can remember the name, but not the dosage. I have her call the medicine delivery service, which is affiliated with the home health care company.

THEY REFUSE TO TELL US THE DOSAGE.

I have no car at the hospital, or I'd have driven down and gotten the stuff myself. I'd have a friend do that, but we have to be all sterile and careful with syringes and whatnot and I don't want to put that responsibility on someone else ... it's stressful enough for me to do it, hoping I didn't contaminate something unwittingly. So I do the only thing I can think of: I have a friend go take a picture of the bag of syringes in the fridge, with the dosage info. I show that to the nurse, meds are ordered and given. Done.

Only two hours later and we're off to the hospital in town. (Yup, we spent 10 hours at the local ER. It would have done us no good to travel to the "big" hospital on our own, as our wait was for a bed there. We would have just waited THERE for 10 hours, with the added bonus possibility of something going horribly wrong on our commute to the hospital, with I-AM-STILL-NOT-A-DOCTOR-Rachel at the wheel.)

Even at the hospital, nothing is to be done until the morning. But at least now we've confirmed that the leak is, indeed, CSF, and Saturday they will put in a drain elsewhere to divert the flow.

*My bathroom faucet is leaking. It's annoying. But I'll take an leaking bathtub fixture to a leaking brain any day.

Even Less Sugar: Quietly Waiting

Things are quiet around here.

The kids are at Camp Kesem, and, by the pictures, seem to be having a marvelous time. They SO needed this, after the lousy summer we've had.

Ian is on week two of antibiotic treatments. (4 syringes, 3 times a day, for 6 weeks: This is mostly via Nurse Rachel, although Nurse Craig has blessed us by easing my workload. Thanks, Craig!) The steroids, which we're tapering, cause a great deal of heartburn and re-flux discomfort. Other than that, he's tired and tires easily. We try to get in some short walks, and he goes on food-based outings from time to time ... but we have to limit his activity to one event per day, as he spends a while napping to recuperate.

Rachel is depressed. Not the "of course you're down in the dumps, all this stuff is going on and you're run down and worried" "woe is me" kind of depressed....

This is "I've done this before where I go into crisis mode and kick hospital butt, then I go into the daily maintenance reality, and all of the feels come to get me at once, resulting in not wanting to get out of bed." This is clinical depression, back from the shadows to say, "Hello."

I was expecting this, so although it's disappointing and annoying, it's not catching me off guard. I'm working on my daily care plan ... basically I have to force myself to do things. But only a few things, and reward myself for doing them. And nap -- just not to the exclusion of all else. I've been here before; when the dust settles, and the long haul begins, there is no fight/flight energy. There is a vacuum (dig: I'm not using the non-metaphorical vacuum because of the metaphorical one. Ha.).

Yes, I know this is to be expected.
No, I don't need to "just get out of the house."
Yes, I am seeing a therapist.
No, I am not suicidal.
Yes, I am on medication.
No, I am not interested in oils or supplements.
Yes, I know I need to:

• connect with others
• exercise
• eat right
• get plenty of sleep
• pursue hobbies
• pursue relaxation

We're waiting

for the kids to come home

for school to start

for eight hours between antibiotic doses

for the antibiotic cycle to be over

to find out if we've beat the infection

for doctor appointments

for the wound to close tightly

for the chemo treatments to start again

for the next MRI to tell us what's going on in that brain

for a miracle