Even Less Sugar: No News is No News

It's been a while since I've updated. I was waiting for a change in circumstance - his, mine, Audrey's, the weather.

Things have changed, I suppose ... the weather cooled off, and Audrey gets a ride to and from school until she can possibly navigate a bus trip again. My back went out a few days after I returned from the week-long hospital vigil, which effectively put me out of commission for almost two weeks (it's better now, although not back to "normal"). During that time they moved Ian to the step-down floor from the ICU.

• He has a shunt placed, which is a permanent thing, and those scars are healing up.

• He got a new helmet (the one he had before was ridiculously small and there was a bit of an uprising on that front. Squared away now).

• His arm swelled; the PICC line stopped working, so they removed it and put one in his other arm. 

• The carrot of "discharge to rehab" was dangled, followed immediately by some radical swings in white blood counts which stalled the move. They cannot account for the numbers, can't find a source of infection, and are loathe to send him off without either a diagnosis or an acceptable (but elusive) infection-free time period. He is now on week five of a mostly bed-ridden hospitalization.

• He has two clots: one in his arm, one in his lung.

• The staples were removed from his head.

• He has phantom stomach pains.

• He has recurring, nondescript, varying headaches. 

• He receives antibiotics, steroids and blood thinners (along with another host of meds including stomach drugs to help the indigestion from the antibiotics? and sometimes insulin depending on his blood sugar count, which is affected by the steroids). 

• He has a left-side tremor which seems to worsen after exertion, or when he feels cold (fever?), when he's trying to eat, or on days ending in Y. 

• Oh, and he has a tumor in his head.

I think that about covers it.

Even Less Sugar: When Audrey Finally Lets Loose

She wants me home.  (I want to be home.)

She wants things just to be normal. (God, do I know how she feels.)

She wants someone at school to talk to. (How I wish our school counselor wasn't split between two buildings. Would it be possible to make room in the budget for two??)

She describes living behind a glass wall that isn't sound-proof. Describes bricks being built up around her.

She feels like it's "pretending" to continue with things like karate and piano, and gets a sense of dread when she knows they're coming up.

She wishes she didn't believe in God because then it wouldn't be like He did this or wasn't fixing it.

She wants me to pay more attention to the little things, like when she talks about friends and grades and classes and such. I'm "always tired or stressed" and "compared to Dad all this stuff is insignificant."

She feels bad when people say they're praying for us. It reminds her that things are bad. It reminds her that they're not getting better.

Even Less Sugar: The Wife Is Right

Went in this morning to a sickly Ian. He had eaten some of his breakfast, but as you may have noted, he normally has quite an appetite. Not so for the last 48 hours.

I asked him about something, or he tried to tell me something, and there it was again. The word-finding problem. His EYES hurt. That was a new one. I went off to find Barry, the day nurse.

Barry has been a nurse for 26 years. He is fast, efficient, knowledgeable, and explains everything thoroughly. If he has time, he’s borderline “chatty,” but always in a sense of, “let’s talk about this thing for a minute or two because I’m friendly and I care but I also need to go check on my other patients.”

“Barry, he’s not right. I know he knows what month it is and what hospital he’s in, but he’s not able to find words, he’s not making sense, his tremor is quite noticeable just lying there, and he’s cold in a 400 degree room. There’s something WRONG.”

Barry went over all his numbers and tests with me. The CT scan I pushed for last night showed no significant change from the last scan days before. There had been an elevated white blood cell count, and they were still culturing his blood and CSF for infection.

Neuro guy came up to remove his lumbar drain (which had, in the prior 24 hours, slowed to a stop and was therefore both ineffective and a potential entry for an infection).  Barry relayed to him my concerns, re: last night and today’s altered mental status.

An hour or so later, Ian’s surgeon came in, felt the back of his head, took one look at his sad self in the bed and determined: we need to do a brain drain; the CSF is building up. He said if it weren’t for the tremors and therefore anesthesia needed, it could have been done bedside. It’s a “procedure,” serving the purpose of a shunt, but where the latter is permanent, this drain will be temporary. All of this is complex, but the short version is: with his fever fluctuation still not definitively diagnosed, we need to be sure he is free from infection before another procedure to implant a foreign body.

After the surgery, the surgeon told us that upon opening him up (I’ve lost track of the head holes at this point), he found a significant build-up and flow of CSF. It’s gotta go somewhere, and it’s just insisting on trying to come out of his head, which is effectively (we hope! for good this time!) water tight.

A shunt is still in the plans. The blood thinners will be resumed half an hour from this writing, playing with the dosage so he has the appropriate amount in his blood stream to prevent new clots and tackle the current ones. If you look here, you will see the first potential complication is risk of bleeding, especially in patients on coagulopathy: ie: BLOOD THINNING.  Also on that list of complications: migration (which is what happened to the last drain that was installed during most recent surgery to repair the hole/move the scalp), infection, which is always our enemy, and the most complicated and terrifying: obstruction  (see all the things we’re now expecting of the ICU nurses in terms of care and prevention?)

The doctor told us something they learned in medical school: “Always believe the mom. If she says there’s an XYZ, there’s an XYZ.” It’s haughty of me, and not even remotely the important part of this story (which is that Ian received treatment for a bad thing doing bad things), but

I.         Was.      Right.

Even Less Sugar: How BIG of a Problem IS This, Really?

When your husband's heart rate spikes when they try to get him out of bed, (and you're not even there to see it because you forced yourself to "get out" and took the shuttle to Target for an hour) then later his cognitive function seems "off" and then he clearly has a fever but nothing is reading as such, his tremor is crazy bad, his nurse (before she leaves for the next shift) mentions his "CSF fluid is a darker color" (she at least also tells you she's informed the doctor), and he says he has a headache, when he hasn't had one for a day or so, when they're testing his blood for Heprin content but not for infection, when he then SHOWS a fever  ...

Is this a brain bleed?
Is this an infection?
Is this a BRAIN infection?
Is this the tumor doing something?
Is this swelling post-op?
Is this a pool of CSF up there making trouble? Is it air somehow getting in again?
Does this "just sometimes happen?"
Does this "sometimes cause this other thing?"

All of that, coupled with feeling like no one was listening to what I was saying, married with, "am I way over-reacting here, if no one else seems concerned?" on top of "they're all in surgery and can't chat with us about this," and "we still haven't determined what we're doing about that PICC line (replace or keep?) ... and "yes, he can tell you his name and this hospital, but he says the bathroom is way down the hall, and says it in broken speech, when he's never actually USED this bathroom and if he had, he'd know it's about 2 feet away ...

I'm so tired.

Ian is sleeping comfortably. His fever went away, his heart rate is acceptable and steady. My eyes sting from a two-hour terror cry. I'm going to bed, while my Dad sits up with Ian for a bit longer, watching him sleep. Tomorrow is a new day, of course ... but as we know, it can always be worse.

Pray for us. I have no idea what today was about, nor do I know if we'll ever know, NOR do I know it won't happen again, or even not to EXPECT it, for that matter. Semper Gumby.

Also please pray for "A," a man probably younger than Ian with similar health history who seems to have taken a dramatic downturn tonight.

There are others on my heart tonight. You know who you are. A hard, sad night.

At least there was rain.

(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?