All –
I feel a need to preface this good news update regarding Tracy’s condition with an analogy: Tracy's situation has been a bit of a roller coaster ride of late with steep inclines, big drops and scary turns. Although there's more ride ahead, I can say without any hesitation that I personally like this part of the ride, as do Tracy's Mom and her boys. I think you will as well. That being said…
Tracy’s condition has improved significantly. Although the conversations just a week ago were dire in nature, somehow our girl has managed to surprise and delight the doctors (not a surprise to those of us who know her of course, but certainly a delight) and has now been taken off the respirator/ventilator because she no longer needs its assistance to breathe. The trachea tube in her throat still provides an oxygen mixture to ensure that she maintains sufficient supply, at least for the time-being, but the percentage of oxygen is being reduced slowly, indicating that her lungs’ ability to absorb oxygen from the air is increasing – a very good thing. Both the charge nurse I spoke with yesterday and Tracy's Mom said that conversations are taking place regarding Tracy’s potential move to rehab (timing TBD) – another very good thing. Although Hospice had been considered, now Palliative Care is the approach. For those of you who may not know the difference between the two (and please don’t feel embarrassed, most people don’t – but we ALL should), Hospice focuses on relieving symptoms and supporting patients with a life expectancy of weeks or months, not years, and their families. Palliative Care may be given at any time during a person’s illness, from diagnosis on – its goals are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment – in this case treatment for Tracy’s pulmonary hypertension. The fact that Tracy and her family are now receiving Palliative Care, not Hospice, indicates that Tracy’s medical practitioners do not regard her present pulmonary condition as terminal – another very, very good thing. So, those are the facts at present.
Now, because a number of y’all have expressed appreciation for the stories behind the facts, here’s a bit more color commentary from my seat on the roller coaster – so fasten your seat belts…
I visited Tracy four times last week, after sending my last very wrenching update. During those visits I experienced Tracy as looking quite good, given the circumstances, meaning that her face showed good color, that she tracked (followed) my presence and movements with her eyes, but that she was not overtly responsive to my questions or attempts at soliciting a response. She appeared to be uncomfortable, as she moved her legs, repeatedly pulling them toward her chest then stretching them out. The charge nurse during those visits said that the medical staff was monitoring Tracy’s behavior for any indication that she was consciously responding to input but they hadn’t observed such at that point.
However, as I approached Tracy’s ICU room yesterday, I saw Nurse Betty (I’m not joking) quickly covering Tracy’s legs (propriety, you know) as she saw me coming down the hallway. Nurse Betty and I have struck up quite a rapport and she appears to absolutely adore Tracy and be providing her with the kind of attention and care that anyone would hope to have. I say “big gold stars for Nurse Betty’s crown”. As I approached Tracy’s bed, Nurse Betty said “Tracy, you’ve got company”, and Tracy turned her head toward me and offered a small smile with very soft eyes – she couldn’t speak because of the trachea tube, but there was no question in my mind that she recognized me. I took her hand in mine and Nurse Betty said that Tracy was having a very good day indeed, then proceeded to show me a photo on her phone that she had taken earlier in the day of Tracy actually SITTING UP ON THE EDGE OF THE BED FOR THE FIRST TIME IN NEARLY TWO MONTHS – another very, very, super-dooper, jumbo economy-sized good thing! I asked Nurse Betty if she could email me the photo so that I could share it with y’all, but wisely she offered that Tracy might not want that particular image floating around the ether of the Internet in perpetuity – DUH John. As observed during my visits last week, Tracy continued to move her legs constantly and I commented to Nurse Betty that obviously Tracy was doing her Jane Fonda exercises, to which Nurse Betty replied “Oh NO, she kicks FAR higher than Jane Fonda…”. I say “another gold star for Nurse Betty’s crown”. And Tracy's mother June mentioned today that a physical therapist administered some "simple" exercises (simple to whom?!) and that she (June) coached her through them, receiving glaring stares from Tracy. June also said she thinks she figured out at least a partial reason that Tracy has seemed to furrow her brow constantly for weeks - she hadn't had her glasses on in weeks - DUH all of us. So June mentioned them to Tracy, then Tracy smiled, and then after June put them on her, Tracy gave June an even bigger glaring stare through magnified eyes... Now THAT's improvement.
So folks, how’s the ride? Pretty darned good, huh?
Some final notes for this update: Tracy’s Mom and her boys really appear to be doing well right now. Additional good news is that the hospital has lifted the "under 18 years of age" visitors ban, so the boys can visit their Mom without having to duck down and sneak past the nurses station or try to talk in really deep cracking voices (ah, the joys of puberty...). They're feeling much more hopeful about things, and are very, very appreciative of all the support that everyone has been sending and giving.
I’ve mentioned to most of y’all that I’m in the process of establishing a college fund for Tracy’s sons – they are very fine boys, reflecting Tracy’s ethics, intelligence, wit and manners, and I feel so strongly that they deserve to have the opportunity to excel in life and become the kind of men of whom Tracy would and will be proud. So many of you have expressed interest in helping in any way you can, and I thought this would be one way to do that, and one that will reap long-term and I think wonderful benefits. I’ll be providing more details about the fund as soon as I finalize the paperwork with my financial advisor. In the meantime, please feel free to share the idea with others as you see fit – in this case, more is certainly better!
I hope these updates help give you the data and facts that the left sides of your brains might require, and also give the right sides a good reason to reflect a smile too. I'm lovin' the data and smiling a whole bunch!
More to come, and much love - John
Wednesday, February 24, 2010
Tracy Update 2
All -
I am so sorry that it's been a few days since the last update, but as you saw in Ginny's note, things have been a bit uncertain, and I think we have all felt a need to seek clarification before another note went out. So here's where things stand as of tonight.
According to Tracy's Mom, Tracy's condition has not improved despite all the various efforts of her doctors and medical staff, and they feel that there's nothing more that can be done aside from keeping her as free from discomfort as possible. The boys now are aware of the gravity of the situation with their Mom, and will meet with a Hospice representative Thursday with Tracy's mother June. I personally know and have great fondness for the Director of Hospice and Palliative Care for the Carolinas and am going to call her to enlist her help in providing the very best care for Tracy as she goes through her transition.
On a lighter note, I was able to take the boys to see IMAX "Avatar" yesterday to provide a little diversion, and we had fun. Rashan, Tracy's youngest son, insisted that we sit in the second row of the IMAX theater which initially had me swatting at the bugs in the forest only to realize that they were just 3D images - I very nearly smacked the head of the woman seated in the first row. Tracy's second son Shamel laughed at me, and I laughed at all three of them in their gigantic 3D glasses. We were quite a sight, but not alone as the theater was full of people in gigantic 3D glasses. As we left the theater, William, Tracy's oldest son, said "I hate this", and then pointed to the brown, blue and slightly green spots on his otherwise spotless white sweatshirt that matched his spotless white sneakers. Apparently his tri-blend Slurpee of Coke, Blue Fanta (whatever that is), and White Grape and had splattered on his sweatshirt during one of the more exciting scenes during the movie. So he proceeded to walk with his arms folded in front of him to cover the spots as we searched for the candy store to buy their grandmother her favorite candy, Jordan almonds. William apparently has a particular preference for the pink ones because "they taste the best", which I determined from the crunching sound emanating from the back seat of my truck due to a hole that somehow miraculously developed in the candy bag on the drive home. We didn't speak of their Mom's current situation and fortunately it didn't seem to hang heavy in the air, but of course it is ever present in their thoughts. Aside from ensuring that Tracy remains as comfortable as possible, my greatest concern at this point is the boys and ensuring that they have love and support during this terrible time, and going forward.
I apologize if what I'm about to share feels graphic and emotionally difficult to some of you, but I want to share and clarify what Andrea Farrell, Trent Thompson and I experienced when visiting Tracy this past Saturday. I feel it's important to do that because each of you knows and has experienced Tracy in your own special way, and I think Tracy would want you to know what's happening so that you can have understanding, and feel whatever you might, in your own way.
When we reached Tracy's room in ICU we could see her sitting up with a pen in her hand resting on a tablet of paper. We donned disposable gowns and latex gloves and went into the room. She both looked better, and was more lucid than we expected, and according to the attending nurse, she was more alert than she'd been in quite a while. It was obvious to me that she couldn't speak due to the tracheal tube inserted into the lower part of her neck and throat which connects to the respirator that breathes for her. The tube's placement doesn't allow breath to pass over her vocal chords so speech isn't possible. Based on my experience with my Mom and others, that's much less invasive and uncomfortable than a tube placed in the mouth. But she was awake and alert, and seemed to recognize us and was able to very, very slightly nod and shake her head in answer to questions, and speak with her eyes. She had tried to write, but there were only scratch marks on the pad as her hand wasn't strong enough to form letters. It broke my heart to see that, and yet it became such a sweet and wonderful visit. Andrea helped us determine that Tracy's uncovered feet were cold, so she asked the nurse to bring a blanket, and that helped. Trent made a joke that made Tracy cough, but she got through that quickly, and I have to admit that I was relieved that for once it wasn't me who made the joke that made her cough. I held her hand in mine and when I'd take it away, she'd move hers toward me. So I held her hand for as long as I could. At the end of the visit, we each kissed and hugged her, told her how much we and everyone we know loves her, and said we'd be back to visit again.
Initially I was heartened, encouraged and relieved, joyful actually, at what I saw, and I believe Andrea and Trent felt the same as we spoke about it afterward. However, when I spoke with Tracy's mother later in the day, she explained that Tracy had been taken off the heavy sedatives that had been used to keep her still while the staff administered treatment. Her resulting coherence was due to that rather than an improvement in her actual physical condition. The doctors have now discontinued all treatment medications because Tracy was not improving with them, but unfortunately she cannot survive without them. That was a horribly sad and disheartening thing for Tracy's Mom to have to tell me, and it was equally so for me to hear, and is to share with you.
I promise to update you with what I learn in the days to come. In the meantime, please continue to send love and positive energy, pray or whatever helps you in your sorrow, and helps Tracy and her loved ones in this time. I truly believe that it makes a difference, and I know that Tracy and her family appreciate everything you've done and will do.
My love to you all - JL
I am so sorry that it's been a few days since the last update, but as you saw in Ginny's note, things have been a bit uncertain, and I think we have all felt a need to seek clarification before another note went out. So here's where things stand as of tonight.
According to Tracy's Mom, Tracy's condition has not improved despite all the various efforts of her doctors and medical staff, and they feel that there's nothing more that can be done aside from keeping her as free from discomfort as possible. The boys now are aware of the gravity of the situation with their Mom, and will meet with a Hospice representative Thursday with Tracy's mother June. I personally know and have great fondness for the Director of Hospice and Palliative Care for the Carolinas and am going to call her to enlist her help in providing the very best care for Tracy as she goes through her transition.
On a lighter note, I was able to take the boys to see IMAX "Avatar" yesterday to provide a little diversion, and we had fun. Rashan, Tracy's youngest son, insisted that we sit in the second row of the IMAX theater which initially had me swatting at the bugs in the forest only to realize that they were just 3D images - I very nearly smacked the head of the woman seated in the first row. Tracy's second son Shamel laughed at me, and I laughed at all three of them in their gigantic 3D glasses. We were quite a sight, but not alone as the theater was full of people in gigantic 3D glasses. As we left the theater, William, Tracy's oldest son, said "I hate this", and then pointed to the brown, blue and slightly green spots on his otherwise spotless white sweatshirt that matched his spotless white sneakers. Apparently his tri-blend Slurpee of Coke, Blue Fanta (whatever that is), and White Grape and had splattered on his sweatshirt during one of the more exciting scenes during the movie. So he proceeded to walk with his arms folded in front of him to cover the spots as we searched for the candy store to buy their grandmother her favorite candy, Jordan almonds. William apparently has a particular preference for the pink ones because "they taste the best", which I determined from the crunching sound emanating from the back seat of my truck due to a hole that somehow miraculously developed in the candy bag on the drive home. We didn't speak of their Mom's current situation and fortunately it didn't seem to hang heavy in the air, but of course it is ever present in their thoughts. Aside from ensuring that Tracy remains as comfortable as possible, my greatest concern at this point is the boys and ensuring that they have love and support during this terrible time, and going forward.
I apologize if what I'm about to share feels graphic and emotionally difficult to some of you, but I want to share and clarify what Andrea Farrell, Trent Thompson and I experienced when visiting Tracy this past Saturday. I feel it's important to do that because each of you knows and has experienced Tracy in your own special way, and I think Tracy would want you to know what's happening so that you can have understanding, and feel whatever you might, in your own way.
When we reached Tracy's room in ICU we could see her sitting up with a pen in her hand resting on a tablet of paper. We donned disposable gowns and latex gloves and went into the room. She both looked better, and was more lucid than we expected, and according to the attending nurse, she was more alert than she'd been in quite a while. It was obvious to me that she couldn't speak due to the tracheal tube inserted into the lower part of her neck and throat which connects to the respirator that breathes for her. The tube's placement doesn't allow breath to pass over her vocal chords so speech isn't possible. Based on my experience with my Mom and others, that's much less invasive and uncomfortable than a tube placed in the mouth. But she was awake and alert, and seemed to recognize us and was able to very, very slightly nod and shake her head in answer to questions, and speak with her eyes. She had tried to write, but there were only scratch marks on the pad as her hand wasn't strong enough to form letters. It broke my heart to see that, and yet it became such a sweet and wonderful visit. Andrea helped us determine that Tracy's uncovered feet were cold, so she asked the nurse to bring a blanket, and that helped. Trent made a joke that made Tracy cough, but she got through that quickly, and I have to admit that I was relieved that for once it wasn't me who made the joke that made her cough. I held her hand in mine and when I'd take it away, she'd move hers toward me. So I held her hand for as long as I could. At the end of the visit, we each kissed and hugged her, told her how much we and everyone we know loves her, and said we'd be back to visit again.
Initially I was heartened, encouraged and relieved, joyful actually, at what I saw, and I believe Andrea and Trent felt the same as we spoke about it afterward. However, when I spoke with Tracy's mother later in the day, she explained that Tracy had been taken off the heavy sedatives that had been used to keep her still while the staff administered treatment. Her resulting coherence was due to that rather than an improvement in her actual physical condition. The doctors have now discontinued all treatment medications because Tracy was not improving with them, but unfortunately she cannot survive without them. That was a horribly sad and disheartening thing for Tracy's Mom to have to tell me, and it was equally so for me to hear, and is to share with you.
I promise to update you with what I learn in the days to come. In the meantime, please continue to send love and positive energy, pray or whatever helps you in your sorrow, and helps Tracy and her loved ones in this time. I truly believe that it makes a difference, and I know that Tracy and her family appreciate everything you've done and will do.
My love to you all - JL
Monday, February 22, 2010
#2 - The NPR Party
Petunia, my 5lb Chihuahua, is very into NPR and greatly concerned about the polarization and stagnation of politics in our country. At dinner last night she told me about an idea she has for the 2012 presidential election - she thinks there should be a new "NPR Party", with Diane Rehm and Terry Gross as co-candidates for President, and Garrison Keillor for VP. Now, her brother Pooter, my 18lb tomcat that I affectionately call "The Grumpy Lump", said that's all well and good, but he'll only support it if Tom and Ray Magliozzi, the "Car Talk" guys, are pegged for Secretary of State and Department of Homeland Security, respectively...
Hmm... A whole bunch of wisdom, a breath of fresh air, a ton of giggles and some darned good diagnostic skills - I think they may be onto something... But I'm thinking we need a little more diversity - what do you think?
Hmm... A whole bunch of wisdom, a breath of fresh air, a ton of giggles and some darned good diagnostic skills - I think they may be onto something... But I'm thinking we need a little more diversity - what do you think?
Friday, February 19, 2010
#1 - Why, or better yet, why not?
Random thoughts come to me all the time - I'm sure that must happen to you as well. Some people process them inside; you know, introverted thinking types. But, being a rabid, many times-diagnosed extravert myself, I've gotta get 'em out; "blap" right on the table, bounce them off others, hear myself speak and feel the reaction. If I don't, I can get into a loop, and sometimes it's not pretty. Just ask anyone who knows me well. I've journaled for years but think it's finally time I bit the bullet and started putting my thoughts "out there."
The title "Ponderable Postulations" came to me one night when I was updating my Facebook wall with a "what makes this so?" commentary. I've often sat and pondered, and when I'm successful at arriving at somewhat of a conclusion, however twisted it may be, it becomes a postulation. Hence the title.
I love interaction and feedback, so if the spirit moves you, feel free to write to your heart's content or your nature's satisfaction!
Here's to the beginning of, well... something!
JL
The title "Ponderable Postulations" came to me one night when I was updating my Facebook wall with a "what makes this so?" commentary. I've often sat and pondered, and when I'm successful at arriving at somewhat of a conclusion, however twisted it may be, it becomes a postulation. Hence the title.
I love interaction and feedback, so if the spirit moves you, feel free to write to your heart's content or your nature's satisfaction!
Here's to the beginning of, well... something!
JL
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