My Life as a Semicolon ; ): G-tube it is

Monday, October 11, 2010

G-tube it is

Well, a bit disappointingly, the amantidine has not improved Ken's swallowing enough to be able to avoid the G-tube which will probably be put in tomorrow. Another surgery. Which, I have to say, makes me a bit sick to my stomach. Ironic, no? As reported by his parents he had another good day. Pretty talkative this morning. His brother Jeff is there now. I talked to Ken briefly, but he was pretty tired by then.

I visited New England Rehab this morning. We are hoping he can go there rather than the rehab in Boston. But I gotta say it was pretty depressing, so stale and beige and quiet. It's hard to think of Ken having to be there. Of Ken having to learn to eat, talk, walk, bathe. I met a couple there. Norman and Sherry (not sure that was her name). Norman had had a massive stroke at about the same time Ken was getting his surgery. He, like Ken, is paralegic on his left side. But he's just started moving his hand. Good.

I was trying to decide if knowing in advance would be better, or just having it happen would be. I think I'm glad I knew it was coming, or was a possibility. We were able to say what we needed to say, just in case.

I hope I can do this. I hope I can be the person he needs me to be, that my kids need me to be, that I need me to be.

By the way, it's seems that everyone in the universe is connected to this blog. So, in the interest of giving good advice. . . If anyone knows anyone who needs a neurosurgeon: Christopher S. Ogilvy is the man to seek. He is not only a master surgeon (as everyone on the neuro ward is quick to tell me) he is a kind and involved physician (as I can attest). I hope none of you ever need him, but I would feel remiss if I didn't put the information out there. It could save a life. I know he saved Ken's.

6 comments :

Anonymous10:46 PM, October 11, 2010
Jamie, you have everything you need, and Ken has everything he needs. Your kids are blessed with amazing parents. Will you wilt sometimes and be exhausted, of course. Everyone does. And just like that Chumbawamba Tubthumping song you'll get knocked down, but you'll get up again. I have faith in you. I have faith in Ken. I will help you guys however I can.

I hate beige too. But beige can be covered with pictures of your friends and family (and, no, it won't be like the picture we took for Matt!). Is this place in Portland so those of us nearby can be a bigger part of Ken's recovery? Of course, you need to do what's best for Ken and for your family. We'll support you in whatever you decide. Lean on us, Jamie, that's why we're here.
much love, Amy K.
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Zarra6:03 AM, October 12, 2010
Amy's words could not be more right on if she recited the entire lyrics from that awesome song. Keep the faith, but don't ever shy away from the occasional prayer & swear. I have entered a long campaign against Inglorious Basterds from being thought of as anything other than horrible--And wonder now what Ken thinks on that last Tarintino flick.

I hate to hear of a rehab place being uninspiring. sometimes those places seem to avoid all color and sense of life...oddly enough. But if it's close to loved ones that helps sway the spirits to the good side. ok, I haven't yet watched CougarTown but will get right on that.
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Rosafaerie9:40 AM, October 12, 2010
You CAN do it, Jamie. You'll find the strength, because your love for each other will provide it.
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” Lao Tzu

And when you feel your strength ebbing you have all of us here to help. Just remember to ask for help when you need it...anything...cooking, cleaning, childcare, moral support, and ear or a shoulder...whatever will help take some of the stress away.

I don't know why they think medical facilities always need to be decorated in dull, neutral colors...something bright and colorful would be more uplifting, but Amy and Zarra are right...you can cover it with photos, and visitors :)

Love to you, to Ken, to the boys, and to your families ♥♥♥
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Melinda McGarry Gregory10:16 AM, October 12, 2010
I also hate to think of either one of you in a place that is stale, beige and quiet. Perhaps a little Devine Design make-over a'la' Candice Olsen is in order when you guys transition to N.E.Rehab? We can make it happen - some Scott Pilgrim vs. the World life-size cardboard cut-outs, STNG wall-appliques, legos, and one of those little zen gardens with the itty-bitty rakes should take care of that 'sterile' feel. Just say the word when it's time and I will assemble a Design Star team to deliver a temporary room-reno that will knock Ken's socks off!

I know you can do this...with a little help from your friends. It's quite obvious that you already are the person that Ken needs you to be.
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chuck mccall11:40 AM, October 12, 2010
Hi Jamie,

I am a friend of Ken's from Brown. My brother happens to be Director of Rehab at Spalding Cambridge and Spalding North Shore, and is also at Spalding Boston quite a bit.

I talked to him about Ken and he said he would be happy to help give any advice on selecting a rehab center based on Ken's condition and other factors (like that you live in Portland and have 2 kids). Please give me a call if you think that would be helpful and I will put you in contact with my brother. My phone is 415.595.3913.
Chuck McCall
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JRC6:01 PM, October 12, 2010
Hang tough. I'll be part of Melinda's design team fir the rehab. I hope the tube is in and that they are sending in breakfast pizza. Know that anything you need that we can do will be done. That includes coming to Boston to spell any of you or the family should that help. Take care of yourself too please. You need to stay healthy.
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My Life as a Semicolon ; )

Monday, October 11, 2010

G-tube it is

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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.