My Life as a Semicolon ; ): update

Thursday, September 30, 2010

update

He is out of surgery. He is intubated, has a tube coming out of his head and something to measure his brain pressure. They had to remove a portion of his skull in order to give his brain room to swell. They won't know if he's had a stroke or not for a few days. They are watching him closely right now. He'll be kept asleep for 2-3 days. That's all I got.

11 comments :

Anonymous6:09 PM, September 30, 2010
Jamie, is there anything I/we can do??? We are thinking of you guys.
-Erika
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Rosafaerie6:14 PM, September 30, 2010
Jamie...thank you so much for all the updates...it helps us all to know what's going on. Just know we're here for you and love you.
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Jill6:24 PM, September 30, 2010
Jamie.......I am stunned with concern. I am so sorry for all that you and Ken are going through. Words just don't seem to be enough. Please call or write if you want me to come down...I easily can if it would be of any help or comfort. 207-491-5757. Love to you all.
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Valerie7:07 PM, September 30, 2010
Ken, dear, dear, dearest, Ken. Be strong; know we are pushing all our strength and hopes and prayers out to you.
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Valerie7:12 PM, September 30, 2010
Jamie, Please let us know if there is anything at all we can do for you, or Wyatt or Gus - your afmily is constantly in our thoughts and prayers. Valerie
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Unknown7:18 PM, September 30, 2010
I can't even imagine what you all are going through, and how hard it must be to even write this. I hope you know how many of us are checking this constantly and appreciate the updates. Ken has touched so many people, and we're all pulling for him and for you and the boys.

Rachel C
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Anonymous7:41 PM, September 30, 2010
Dear Jamie,
I am so relieved to know that Ken is out of surgery and made it through for the second time. You must be exhausted! I hope you can get some sleep in the next two days. Are you staying in the hospital or maybe in the Ronald McDonald House? I hope someone is with you to spell you in the vigil. Ken's parents perhaps? If you need anything, don't hesitate to call (603 224-7272). I have been with you all day in my head. Would you like some music? When I was in the hospital, a harpist came around to play for me in my room. It was the most lovely thing and it picked me up and took me to a whole other place where there were no blood pressure machines, nurses, hospitals, and white gowns. I wonder if the harpist goes to Mass General as well as to Brigham and Women's wherre I was?

I just have a feeling that Ken is going to come out on top of all this. Hang in there and stay positive. You are experienced with good outcomes and we are all pulling for you both 100%!!!

Loving you always lots and lots, Kitty
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Anonymous7:43 PM, September 30, 2010
Dear Jamie,
I am so relieved to know that Ken is out of surgery and made it through for the second time. You must be exhausted! I hope you can get some sleep in the next two days. Are you staying in the hospital or maybe in the Ronald McDonald House? I hope someone is with you to spell you in the vigil. Ken's parents perhaps? If you need anything, don't hesitate to call (603 224-7272). I have been with you all day in my head. Would you like some music? When I was in the hospital, a harpist came around to play for me in my room. It was the most lovely thing and it picked me up and took me to a whole other place where there were no blood pressure machines, nurses, hospitals, and white gowns. I wonder if the harpist goes to Mass General as well as to Brigham and Women's wherre I was?

I just have a feeling that Ken is going to come out on top of all this. Hang in there and stay positive. You are experienced with good outcomes and we are all pulling for you both 100%!!!

Loving you always lots and lots, Kitty
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Anonymous7:47 PM, September 30, 2010
Jamie,
In case you didn't know, "Roro" is what Kath's kids called Roland and it stuck. X0X0X0 Kitty
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Anonymous7:50 PM, September 30, 2010
Jamie,
Your updates help enormously to quiet the imagination that runs rampant without real news of Ken. Thank you so much!! Kitty
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Unknown7:56 PM, September 30, 2010
I love you. Give him a kiss for me... and kiss yourself for me.
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My Life as a Semicolon ; )

Thursday, September 30, 2010

update

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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.