My Life as a Semicolon ; ): Ramps, pizza and small bathrooms

Sunday, November 14, 2010

Ramps, pizza and small bathrooms

Visit accomplished. Got him into the car without a hitch. Was having trouble getting the wheelchair into the car when (and I am not joking) a cowboy came by and folded it up and put it in the trunk for me. He even TIPPED HIS HAT! We drove home, with Ken feeling a bit carsick. He's been complaining a bit of some dizziness when he rolls over in bed, we think it's because that bit of skull is missing. It's messing with his equilibrium a bit. But we successfully got him home. Thankfully it was a nice day because we had the windows rolled all the way down to get some fresh air.

We drove into the driveway and there were Jamie and Stephanie (friends from Boston), Michael and Sara, and the kids. We got him out of the car easily. Getting him into the house was a bit harder, but fine. Ken's Aunt Ellen and Uncle Frank had a temporary ramp they loaned us (thank you!). There would have been a lot of jostling without it. We sat outside and had lunch. Ken wearing his helmet, yellow lensed aviator sunglasses (given to him at the disco party by Shane) and a baseball hat (given to him by Jamie for his B-day) that says "old as dirt". Mostly we just chatted and enjoyed it. But, boy, we have a lot of thresholds in our house and our downstairs bath suddenly gets exponentially smaller when you put a wheelchair in it. Hopefully he won't need the wheelchair in the house when he comes home.

Ken and I talked in the car on the way home. We were both feeling the same. A bit of, as Ken put it, ennui. It was very hard to bring him back. Very hard.

The thought as far as discharge is that the operation for his skull will be on 12/6, and he'll be at MGH for 3-4 days. He may go back to rehab if they feel he needs it. I guess anesthesia etc., could make him lose some ground, but my impression is that it would only be for a short stay to, as they say, get a "tune up".

All I want for Christmas . . .

5 comments :

JRC8:09 AM, November 14, 2010
I bet he looked awesome sitting in the sun with those shades. What a great step!
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Anonymous10:39 AM, November 14, 2010
Sounds hard and good. Nice to have good friends and family at the door, some of the old along with some of the new.

On a side note, I have really enjoyed hearing stories about the boys from Jen. It sounds like they are dealing with this really well. Like they are processing what is going on while still really enjoying life.

The latest story I heard was about Jen painting toes with them. Jen told Gus one of the best things was being able to wake up and see your painted toes and say 'Good morning toes!"

Next morning Jan came in to see Gus smiling and wiggling his toes and saying 'Good morning toes'.

Wyatt was recently overwhelmed by his own intelligence. He said "Tanta Yenna, I am so smart". TO which Jen replied "I know you are so smart Wy Wy, and why to you think that is?" Wyatt said "Because my brain is bigger than the universe"

Tim
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Anonymous3:51 PM, November 14, 2010
So glad you had a great day. Many more to come. And, I bet you will get your wish.
S.D.
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Anonymous10:12 PM, November 14, 2010
Such a great milestone, a day at home! I wish I could've seen the "old as dirt" hat! I hope you get lots more days at home soon, Ken.
--Amy K.
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Anonymous1:39 AM, November 15, 2010
omg. home by 12/10. Wild. and wonderful. Doug's birthday party is this saturday the 20th at 6p. We have a ramp and a downstairs bathroom. Tess.
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My Life as a Semicolon ; )

Sunday, November 14, 2010

Ramps, pizza and small bathrooms

5 comments :

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.