Even Less Sugar: Caregiving Day One: Homecoming

I am not complaining. All of the things worked out fine, and we are fine, and Ian is home. I just wanted to give you a glimpse.

Yesterday: Laundry. Making the hospital bed that's in the living room. Potty chair and wheel chairs are ready to go. Bath chair arrives (thanks, friend!).

Mom meets me at the rehab center to get Ian. This round, I'm giving two types of antibiotics at home. One requires 4 syringes (2 saline, 1 heprin, 1 med, which needs to be kept cold and removed from the fridge 30 minutes prior). The other requires a very slow push, so it uses a giant syringe and a motorized pump. I receive a demonstration before leaving the hospital.

Freedom60 Pump

At 1:30 p, the school calls: Ezra is having "difficult bathroom issues" and needs to be picked up. We wheel Ian and his walker to the car, and with some difficulty load him up. Then we head to the school and get Ezra, who is "uncomfortable" but well enough. We cram in and head home. The home health nurse calls to say she'll be at the house around 5p.

IV medicine is due at 4. It won't be delivered till 4:30p ... okay. There's wiggle room. We're supposed to wait for the nurse to arrive to do the first home dosage.

The meds show at 5p. Still okay. I unpack the refrigerated box and bag of boxes of bags and meds and supplies and organize them a bit.  I realize: no magic pump.

Maybe the nurse brings it with her? Since I haven't been "checked off" on using it?

I should have known better, based on last time: meds are one folks, care is another.

Nurse shows at 6p (we're now at 2 hrs past due): no pump.

She calls, they're "sending it out," which means we'll have it by 9p. She sticks around for the meds I CAN do, and we do some math:

The antibiotics are on an 8-hour schedule. They are now staggered, 3 hours apart, and both have started later than the schedule. This means we need to fuss with the dosing times, using that aforementioned wiggle room to get them lined up together and properly spaced. It looks like this: (C and V being the two types; remember that "V" uses the pump, and therefore takes 1.5 hrs to run, followed up by another 2 syringes -- saline and heprin)

6p  C
9p  V (I want to sleep now, but I have to wait 1.5 hr for the pump to be done and do the other 2 syringes. Also, the second home-health nurse is here.)
-potty break for Ian somewhere around midnight-
2a  C (yup, this is not a pleasant wake-up)
-somewhere here, in a haze, is another bathroom trip. I think.
5a  V (wow, it's amazing what a dope I am at this hour, after a few hours of semi-sleep on a squishy couch. I manage to start the pump and set my alarm, fall asleep, get back up and disconnect, go back to bed, start to fall asleep, only to realize I forgot the 2 follow-up syringes. Back to sleep at 7.)
11a C (nurse is here! just to be sure I've got this. And I do ... although this is the easy one)
12p V (like a boss. Is it bedtime yet?)
7p C/V (they're both together now! yay! but we're not done fussing yet ...)
3a C/V (yup, that sucks - I'll either need to go back to bed for an hour or stay up till 430 ...)
10a C/V
5p C/V
12p C/V
8a C/V (the golden hour! now we can go back to the schedule we had at the hospital, 8 4 and 12. Much more manageable).

It's not that any of the things are difficult, or particularly stressful (although being apprehensive about being 5 hours late on a dosage was getting there) -- I've gotten "over" my extreme paranoia about screwing up the sterilization and antibiotic administration -- it's that all of these things are swirling around in my brain. They are all things to be considered and done, and that's outside the slow, arduous trips to the bathroom, the pill regimen, meals, kids, general house-type things .... and starting this week, the cadre of therapists who will be calling (phone calls! blech!) to arrange -- and then showing up to do -- speech, occupational and physical therapy.

Okay: maybe I'm whining. Just a little.

A Little Sugar: Sweet Times and Home Sweet Home

So, this happened:

On Saturday, after a full day's rest and a bit of administrative generosity, Ian got to visit with buddies from his Navy pilot days: Bluetails VAW-121 descended on a local restaurant to swap inappropriate stories and show their appreciation for "Rev." It was a MAGICAL night ... for Ian, 1. to be out of the hospital after two months straight, 2. to reconnect with brother-like-guys he hasn't seen in 10 years, 3. to exercise his brain with good memories and conversation. For me, it was like no time had passed ... it felt like a typical squadron function. My non-social self was completely at ease with the old crew, and it felt warm and fuzzy. No pity, just encouragement. It was like Normal Town for a few hours. (BTW, I had nothing to do with planning the event other than to get Ian dressed and to the restaurant. Thanks to all who coordinated this special night, and went out of their way to attend.)

You DON'T wanna know what was so funny.

And as if Saturday didn't give us enough of a much-needed high, today we got the news:

Ian comes home Friday.

I'm taking a risk, putting it out there in print this soon -- as I've noted before, things change, we take steps backward, drama unfolds. But I feel pretty good about this impending jailbreak.

What this means: Ian will receive in-home therapy from several specialists, likely followed by out-patient rehab. He will sleep on the 1st floor until he is strong and confident on the stairs. He will, of course, be open to visitors, if they are cootie free and have checked with me.

I am the wizard. The gatekeeper. The troll. Dr. David Banner ("You won't like me when I'm angry"). Get your flu shot, keep your germies at home, and do not "stop by" or "pop in" unannounced (this goes for family and clergy and the President, if he is so inclined); remember, his bed will be feet from the door -- no chance of your arrival not waking him. A call, email, Facebook message or text will let me protect his rest, his family time, and my sanity.

Lots more hard work to do. New phase, new challenges. But there has been triumph.

Even Less Sugar: Rehabulous

weaving cones in a walker. like a boss.

First week of rehab is in the can. 

It's quite an adjustment go to from the buzz of the ICU floor, with much staff and sterile and beeping and always poised for the next specialist's visit to a chill, quiet, open hallway, no monitors attached. It might seem like a big relief, but it takes (me) a few days to breathe easy and not worry that he's not receiving enough medical attention. 

He's close to home! Yay! That's a fantastic, fabulous thing. Except it does raise some questions and some guilt: how much time should I/do I need to spend at the hospital with him? He's working hard ... does he need/want a cheerleader in his therapy sessions? Shall I wait for him to be done and then come to see him? If I'm not here every day, does that mean I don't care? (obviously not, but that's where the guilt comes in). Does a "pop in" visit "count" or should I stay for a few hours? How often should I bring the kids in with me? 

I was disappointed two days ago ... I watched him struggle with his tremor. He was pale. He said nonsensical things... he was too tired mentally to converse in a "meaningful" way. He was very cold, in a very warm room, and several coughs led to a raging headache.

It was depressing. I couldn't bring myself to come in yesterday. 

I kept reminding myself: He did this before. He relearned to walk. At one point, he sat with drool hanging out of his mouth, unaware of it. This is not that. We'll get there ... Be patient.

rehab snuggles (it was PJ day at school)

Audrey makes eye contact. So feelings.

But then I'd think: Yes, but this time he's altered going into rehab. He's not 100% to start ... what is baseline now? Is "generally confused" going to be the way things are? Is he ever going to show interest or patience in the minutia of conversation? Have we transitioned from best friends to caregiver and patient?

What happens when he's released from rehab? That puts me back into nurse mode again. I am the one to determine "how he is" going forward. Pressure.

I spent most of a day arguing with myself, dealing with my own demons. 

Today I steeled myself to get over it and spend time with my partner, my friend, my love. 

I was rewarded with a More-Ian Ian. 

Yesterday I felt defeated and rotten. Today, we can do all things. 

It's different by the day, folks. This journey we're on ... it's a bumpy one. 

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.