Happy Life Day

Today is our anniversary.

 

One year ago today, on May 1 2019, my son Weslee entered the hospital for an exploratory brain surgery called SEEG. He had a very rare side effect to a seizure med that caused massive brain bleeding during the surgery, so he had a stroke. He was put in a ventilator, and before he left for a Neuro rehab hospital at the end of May, he had had 8 more surgeries. He came home, finally, after a total of 35 days, still relearning to hold a cup, talk, walk, think, etc. 

It has been a struggle this past year. He still uses a cane to walk, tires easily, has to take a nap almost daily. He has huge gaps in his memory, has developed a facial 'tic', and still has the brain drain (shunt).

I am so thankful every day for Mr. Shane, the nurse on the ICU floor who first noticed Weslee wasn't responding to stimuli as expected.  He noticed it in the nic of time; his surgeon said Weslee would have died that night if Shane hasn't caught it, and if the surgeon hadn't immediately taken him back to the OR for emergency surgery.

So...today, Weslee and I will celebrate his LIFE day.



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I sent a dozen specialty cupcakes to the ICU ward (but Mr. Shane no longer works there..bummer). And even though Weslee is taking a nap right now (2:30 p.m.), I ordered a 4:00 p.m."linner" for us from his fave place: Cheesecake factory.

Day 4 after SEEG Surgery

Another Thursday picture!

Pic from May 4 2019 at 12:52 p.m. 

He is a tiny bit more alert here. The tubes and bag that have red stuff in them ... that red stuff is from his brain... blood, spinal and brain fluid, etc. If he didn't have these brain drains, he would be dead. 

And, as you can tell, he still has the SEEG wires in his head. They wouldn't take them out until his brain swelling goes down some. Otherwise, could do even more damage.

Pic of Weslee 3 days after SEEG Surgery Gone Wrong



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This is another Thursday picture of Weslee's SEEG surgery and the ordeal after.

 

May 3 2019 at 6:40 p.m. ... day 3.  The breathing tube came out shortly before I took this pic.  It had been nearly three days ... since I nearly lost him.

 

Note the staples on the right side. That is where they went in to do the surgery to release pressure from the swelling in his brain.

They left in the "white plugs" which are the SEEG probes. With the brain swelling, the data will be useless so they were removed eventually.

 

Hey...at least he is alive and awake here! 

Day 2 after SEEG surgery

Another Thursday picture from Weslee's SEEG surgery.

This pic was taken the day after the SEEG surgery, on May 2 2019.  He is still on the breathing tube and spends 99% of the time asleep. At least, I always considered it asleep. It was the only way I could deal with all of this.

Yes, can you say ... denial ?

I kept talking to him, telling him he had to stay with me, to get better, to open his eyes. That I loved him.

Pic of Weslee later on May 1 2019 after SEEG

Another Thursday pic!

This was taken on May 1 2019, the day of his SEEG surgery, but later in the day. 

Weslee had troubles waking from the anesthesia from the surgery. The recovery department didn't seem concerned and moved him up to ICU within two hours.

A very on-the-ball nurse, Mr. Shane, noticed that Weslee was super lethargic, not really waking up enough to interact, and unable to squeeze his left hand. It didn't seem right so he immediately called the neurosurgeon who was still in the building and came quickly.

He ordered a CAT scan for ASAP, and once he had the results, he explained: Every probe the surgeon put in caused bleeding in the path/track.  Some people can bleed from one, or maybe even two but the neurosurgeon said he had NEVER heard of every probe causing bleeding.  The bleeding caused the brain to swell.

Then ... I will never forget the surgeon taking me out of the room and telling me that if he did not immediately go back in and relieve the pressure, he will die.  Not could.  WOULD.  Would die.

I couldn't believe what I was hearing, and despite my wanting to fall apart, I didn't. I bucked up, signed the paperwork, and he left to book the OR. Weslee went within the hour for the emergency surgery (his 2nd of the day) to release pressure and install a brain drain.

While I waited, I sobbed the whole time.  "Would die.  Would die."  It kept replaying. I couldn't lose one of the few people I truly care about.

Weslee came back to the room in a couple of hours.  He had had a stroke and couldn't function, so he was put on this breathing tube.

Pic of Weslee Right After SEEG Surgery

I decided to post some of the pics I took of Weslee's 2019 surgery. Look for them every Thursday!


Weslee's seizures had been progressively getting worse since my 2016 diagnosis of breast cancer. It was stress about the possibility of losing me.

Once my son and I moved from Colorado to Kentucky mid 2018, I found him a new epilepsy team.  After a stay in a local EMU during Thanksgiving 2018, the team decided to get a neurosurgeon involved.  The team reviewed the EEG data, the 3T-MRI and CAT scans. We then discussed the need for more information before even thinking about a VNS or RNS or taking more of his brain out.

He scheduled an SEEG. He said he had performed it many times, with very few problems. I researched the procedure, and found it to be relatively safe.

(Stereoelectroencephalography  is an invasive surgical procedure that is used to identify areas of the brain where epileptic seizures originate. During the SEEG,  doctors place electrodes in targeted brain areas, which are then monitored to precisely locate the seizure source.  Source: https://my.clevelandclinic.org/health/diagnostics/17457-seeg-test)

This picture is my Weslee, shortly after moved from recovery to ICU. He's very drowsy here. Hard to wake up.

Another Side Effect from Hospitalization

Not for weak stomachs!

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As I've written about, Weslee went into the hospital on May 1 for a SEEG procedure, which went very badly. Brain bleeding, shunt placement, and lots of various therapies needed.

A few weeks ago, after Weslee got a buzz hair-cut, I noticed what I thought at first was dandruff but turned out to be crust from dried brain fluid.  It was leaking from his 2013 surgery scar, NOT from the 2019 scars.  Weird, I know.  I took him back to his neurosurgeon, where they put in a stitch and put him on antibiotics. It healed well. Or so I thought.

Today I took him for another haircut.  Found more crusty stuff.  Back to the neurosurgeon.  This time it was discovered that it was just oozing so instead of a stitch, we got a little pot of antibiotic cream and another around of antibiotic pills.

Unfortunately, he is scheduled for an at-home 72-hour EEG test starting tomorrow so he will only get the cream tonight and tomorrow, then we wait to apply more until after the EEG.

Here's picture I took after the first application of cream.

(The waves have been there since his 2013 surgery. No one knows exactly what they are, but they think it's just edema - fluid that has collected. Kinda cool but makes shaving his head difficult.)

The neurosurgeon thinks these leaks are from pressure building up, but not from his brain bleeds. That maybe the skin from the 2013 scar was weak / thin anyway, and the haircuts are cutting into it (not likely - I watch like a hawk). Or maybe he's scratching it without realizing it. Or maybe the extra fluid is looking for another way out besides the shunt. No clue.  Hoping this won't continue.

SEEG surgery gone wrong

Weslee's May 1 2019 SEEG surgery went really really badly.    (Reminder, it was to help us get data so we can make an informed decision as to the next step: VNS, RNS, surgery, etc.)

The surgeon marked on the head where to drill the holes through the scalp and then the skull so that he can thread probes through the holes, reaching various depths and components of the brain.  Weslee had 7 probes put in his head, then was sent to Recovery.  He had a hard time waking up, but after about an hour in Recovery, he was sent to the ICU (intensive care unit).  If not for an on-the-ball nurse (Shane) noticing that Weslee still wasn't quite waking up, and that the left side of his face was going slack, my son would be dead.

See, it's rare that SEEG probes leave a track of blood/bleeding as they go in.  But still, sometimes there might be ONE probe that will cause bleeding.  EVERY ONE of Weslee's probes bled, causing the brain to swell and preventing Weslee from waking up fully.

Shane immediately called the surgeon who, luckily, was still in the building.  He ordered a CT scan, stat, which showed the massive bleeding.

The surgeon took me aside and said "your son has an abnormal amount of bleeding in his brain.  If I don't operate immediately to release the swelling and pressure, your son WILL go into a coma and die".

I will never be able to forget the look on his face, and the urgent sincerity in his voice, and his terrifying words..

Needless to say, I gave him permission to do the follow up surgery.

Long story short (I know, too late!), he had a stroke from all of the brain bleeding. He had a breathing tube for almost 2 weeks, two brain drains (temporary shunts, one on each side of his brain), and a total of 7 surgeries in 16 days. After getting a permanent shunt on day 16, he was moved to the epilepsy ward on day 17, and less than a week later, moved to an inpatient rehab facility.  He had to work hard so that his left side functioned again. 

We didn't get any information/data from the SEEG.  It would have been corrupted because of the brain bleeding and swelling.  The probes were taken out shortly before he got the permanent shunt.

He goes home tomorrow. The plan is to get evaluated from an out-patient rehab facility, and to continue his physical therapy, occupational therapy, and speech therapy.  He also needs new glasses because his eyes aren't tracking together, and he has double vision. The local YMCA is allowing Weslee several free months to use the pool for his physical therapy.

We never did get a 100% definitive answer as to what caused the bleeding.  The general consensus among the 5-10 doctors he saw every day was that one of his seizure medications caused it. One of those super-rare side effects.

Ask me if I'd do it again, knowing what I now know.

No. I'd rather have him on medications for the rest of his life.  Weslee has a long road to recovery.