On The Mend

Hi all,

It's about 6:30 Sunday morning and I thought I would let you know how things are going. Quick answer is "slowly better". I'm taking a couple of naps a day, and otherwise trying to take things in a deliberate approach to rebuilding strength. I got on the scale this morning and found myself below 200 lbs for the first time in 12 years.

Another interesting issue is that I was strapped down/restrained for several of the first days in the ICU. I must have fought that, because both shoulders are painful, particularly at night. Also, my last couple of nights on the general ward shredded any sleep schedule I had. As a result sleeping through the night has been difficult, but it is getting slowly better. I was probably up 4-5 times last night, but it was the first night I didn't wander downstairs for a while.

Liz is in Seattle for a few days for a long-planned half-marathon (God knows she deserves the stress release) and has left Robbie and me in the loving care of her sister, Kate. Kate has been my sister-in-law for almost 19 years, and we've talked more and more substantively over the last three days than we did in the time previous. She is a wonderful, kind, and informative person. I sorry I waited so long to get to know her this well.

Kate has convinced me that my body needs calories to rebuild, so yesterday the three of us went to a local diner. I had my first chocolate milk shake in years. This morning I had a PB&J sandwich and a banana for breakfast.

On Tuesday, it's back to Georgetown. First for an echocardiogram to ensure there was no heart damage and then to meet with Dr. Cheson.

Vic L.: love the icon picture (you sexy beast).

One last note: my brother-in-law Buster came through his quadruple bypass surgery great and should be going home today or tomorrow. Thank you all for your prayers.

Home again, home again, jiggity jig...

Well, this is Tim, and I'm home in Leonardtown. I'm weak as a kitten and phenomenally happy to be here--and you can take that "here" anyway you'd like. It will be another two weeks before I'm ready to go back to work--I really am that weak.

Here's a current picture. It's after the first shower I've had since this whole thing started.
I am profoundly grateful to everyone who provided support through this ordeal, and it has been an ordeal. By support, I mean interest, prayers, concern, etc., but I am most particularly thankful for those of you who were so helpful with Robbie and Liz, including Kath and Mike, Mindy, Peggy, Art and Andy. Another group to whom I'll never adequately be able to thank includes my brother Wilson, my sister-in-law Kate, Jim and Elena, my father-in-law Chuck, and my Mom. I love you all.


More soon on my perspectives of my last few days, and how for a while I despaired of ever leaving the hospital. I'm going to rest a little now, but two last things.

1) Congrats to the 2009 National Champion LSU Baseball team, and
2) Please keep my brother in law Buster Briley in your prayers, as he is coming of triple bypass surgery yesterday. Hang in there, Buster.

Moving out of the ICU

It was a good feeling to see the empty bed, and Tim sitting up. He's moving to the general ward probably tonight. As a note this is probably my last or next to last post. (Though I may be invited back occasionally.)

The immediate crisis I think is over - though the longer term fight remains. I have appreciated being able to communicate with everyone. My thanks are not nearly enough for all the support, but they are heartfelt nonetheless.

Take care, Liz

hello from the icu

you will no doubt notice a diminuation in the literary quality of this blog entry, because it's Tim writing this. My hands still feel swollen and unused to this kind of work. I'm being scheduled out of ICU tomorrow, and will probably be home later next week.

More thanks to those who deserve it next week, when Wilson and Liz can help me recreate the memories I've lost.

Whew - I'm tired, happy but tired...

Today is a landmark of sorts for a number of reasons - Tim showed significant improvement again today, Robbie saw him for the first time since he was on the ventilator, he is no longer on any kind of breathing support (no supplemental O2), and tonight is the first night he will be by himself in the hospital.

Wilson went home today after 5 nights in the hospital sleeping in Tim's room on the recliner they have in there. While it's a reasonably comfortable recliner, I cannot imagine sleeping on it for 5 nights. I mentioned this to my sister (who slept on it for 3 nights), and she said, "I have nothing but complete respect for Wilson. It would have been really hard spending 5 nights straight there." I like to think that the fact that someone was with Tim for the most critical time he was in the hospital made a difference. I had a conversation with Louise B. last night, she told me much the same thing my sister told me. Quotes mine but generally - "Having an advocate with the patient all the time makes a big difference. Family notices things that even the best professionals sometimes don't. Knowing that there is someone always there, invested in the patient outcome, leads to even more complete care." Understand that I have nothing but respect for all the professionals at Georgetown: Julie, Tracy, Diane, Z, Vanessa, Carrie, Michelle, and everyone are incredibly competent people who I respect completely. It was still nice to have Wilson and Kate there.

Tim was Tim today - though pretty tired. I brought Robbie to see him and it was obvious that a 5 year old is completely out of place in an ICU. He was appreciated by all of Tim's doctors/nurses though, who have seen pictures and heard stories about him for the past week. Robbie was a little scared of Daddy at first. Despite my best efforts - he was unsure around Tim and the medical equipment. I think the fact that Tim was awake and couldn't interact with him in the way he is used to was the main reason. It took a little while, but Robbie held Tim's hand and told him he loved him, in between drawing a really big battleship on the whiteboard they have in Tim's room. It looks like Tim will be probably moving out of the ICU to a regular room on Monday. I'll let you know how that goes.

Tim read the entire blog (with the exception of this latest entry) and said, "I don't have words, thank everyone again." I think because he doesn't remember all of what he went through, which is good, he is still trying to process just how ill he was. Hard to get your head around I would imagine.

He will probably take over blogging in the next few days. Take care. Liz

He's back....

All, Tim is still Tim and he's awake, responsive, and still has his sense of humor. He was actually cracking a joke or two with Wilson today. A HUGE improvement from yesterday. (Kim B. - you're right sometimes a setback sets the stage for a big improvement) He still has some issues - occasionally not responding, diminished renal function, and there are a few things that the doctors are still worried about. But, in case you wondered - the photo with the thumbs up says it all.

Tim is still in intensive care until all the issues are resolved to the ICU team's satisfaction. It will be at least a few days. I was able to confirm with him today that he'd prefer family only visitors until he's out of the ICU. (The ICU does not lend itself to any sort of privacy and Tim is a private guy.)

I actually took the photo to show Robbie how Daddy is. I'm going to bring him to see Tim tomorrow and I think the preparation helps. Robbie went to visit Tim in the ICU when he was still on the ventilator. He'd been asking about him, so I took a picture to show him. "Do you still want to see Daddy even when he has a breathing machine?", I asked. "Yes Mommy, Daddy has a really cool ROBOT breathing machine." I hope that even in the fog he was in at the time, Tim could hear his son. Especially when we let Robbie shout "I LOVE YOU DADDY!!" really loudly. Sometimes, you just have to forget about "inside voice".

Keep the comments coming, I've told Tim about all the people who have been concerned. Liz

Hard lessons to learn

It's funny how you can go through life not always understanding the meaning of the promises you make. It's been driven home to me over the last few days what "for better or for worse, in sickness and in health" really mean. Some things that you have to do make it clear though. As Wilson said to me this morning, "Sometimes there are no easy decisions, just decisions."

Anyway, Tim is still making forward progress. It's slow and we've had some setbacks today. As a note, each time the hospital tries a different course of treatment, I have to sign an authorization for treatment. This has been for all of the lines they've put in, dialysis, some specific tests, etc. Each time I sign the consent form I think about the impacts on Tim for each of them. Most of the treatments are painful, all of them are necessary, all of them give us the information we need to help him get better. None of them are fun for Tim though. I told him today right before I left, "Look, I signed the consent form, when you wake up you can yell at me. Just don't blame Wilson if I'm not here."

We were very concerned today about how long it was taking Tim to wake up. He wasn't really himself today again. I talked to the attending physician and she agreed that it was reasonable to be concerned and sent him for some additional tests. They aren't back yet, but should be tomorrow. As I was driving home today Wilson texted me that Tim was suddenly very responsive and starting to talk. I hope everything starts to move forward again tomorrow.

Robbie and his entire class made a get well card for Tim that I'm bringing them tomorrow. I have high hopes he'll be able to read it.

Until tomorrow - Liz

Another day - some more progress

Tim is making good progress so far, the dialysis is really helping him. I sometimes have to remind myself that progress is measured differently in the ICU than in other places. I really thought that when he woke up (and he is awake, though intermittently) that he'd be back to himself fairly quickly. And he will be, but on ICU time not normal time.

What that means is that for now he is not really himself - his renal function has been so low that he still has a lot of toxins in his system that are impeding him. So he isn't able to communicate yet, though he opens his eyes when you ask him to and looks around for up to a minute or so. He is definitely grumpy though - and according to the doctors that's a good thing. His attending physician smiled when I told her he was angry, she said "That's good - the angrier they are at what we are putting them through the faster they get out of here."

So, I think we are probably looking at a week or so of slow progress before Tim can really communicate with anyone. So for now, I still think we need to keep visitors to family only. I'll let you know as soon as that changes.

On another note - I have always respected Tim's brother Wilson for all that he does for his family. I now have personal experience with it at a level I never had before. For the first three days that Tim was in the ICU, my sister Kate (who will be the subject of another post) spent the night in the room just to ensure that Tim had someone there who was family at all times. For the last two nights, and tonight will make it three, Wilson has done the same thing. Only he hasn't gone home at all. He's also making sure we all have the latest information when we can't be there. He's truly a hero to Tim, Robbie and I for all he's done.

Robbie asked me today, "What if Daddy stayed in the hospital forever?", I'm glad that won't be happening though it does feel long.

Everyone take care. Liz

Note: The picture needs no words...

The ventilator is out and Tim's awake

The ventilator is out!!! For that alone this is a great day. There is some unique background on this that I haven’t shared, mainly because I wanted to wait until I was sure about Tim’s prognosis.

On Friday last week, I got a call from the hospital effectively saying “come quickly, his breathing is deteriorating. He wants to talk to you before we do anything.” Needless to say my driving was as close to NASCAR as I could get it on the way to the hospital. DC traffic still managed to make the trip close to 2.5 hours. My stress level kept going up despite Kate’s efforts to slow me down, and Robbie’s comments of “there sure are a lot of horns, Mommy.”

I arrived at Tim’s room and the situation was pretty serious. The doctors told both of us that they needed to put Tim on a ventilator now and they couldn’t tell him for how long or when he would be off of it. Then they left us alone to talk. He asked me what to do and I had no hesitation. I said something along the lines of “You go on the ventilator, it’s your best chance and we’ll all be here waiting for you to wake up.” I’m glad that with everyone’s help, Tim’s toughness, and a lot of prayers, he woke up. Grumpy as sin, but awake.

On a lighter note, the following is a list of some things I really never thought I’d be grateful for, but really am.

1. Fruit Loops – 5 year olds love them and I no longer have any guilt for giving them to Robbie for breakfast.
2. Spongebob – For those of you who watch, no explanation necessary. For the rest of you, well…yes, it IS bad.
3. Spongebob Macaroni – yes you can actually get Kraft Macaroni and cheese shaped like Spongebob.
4. Ibuprofen – It comes in the 500 tablet economy size!!
5. On-line banking – Did you know you can pay all your bills on line with an IPhone? I have become a walking advertisement for Apple.
6. GUH Gift shop – it has candy and really stupid pens that 5 year olds like.
7. Sunshine’s snoring – I actually really missed it while we were away. And she snores like an old man with a deviated septum…
8. Hidden Valley Ranch dressing – If you douse any food with enough of it, Robbie will eat it.
9. No air conditioning – Really (both the house and car air conditioning are on the fritz right now.) When we slept at Elena and Jim’s with air conditioning that worked it was such a contrast we slept REALLY well.
10. Father’s Day 2009 – Tim’s going to be around to see it.

Have a good nite. Liz

Another day and some more progress - slow but steady

Today was both encouraging and frustrating for me and for Tim as well (I would imagine since he's not talking yet though I know he wants to.) As an aside, I believe that in 20 years of being with Tim, this is the absolute longest he's been quiet. For all the times I wished I could get a word in edgewise, I REALLY prefer when he's talking.

Tim continues to improve slowly. His breathing and heart are great, a lot of basic functions have improved and his body has finally managed to clear some of the sedative drugs they've given him so he's much more responsive. That's the good news. The neutral news is that his kidney function has not really improved at all, so the dialysis is probably on for tomorrow. Since they have to put in another line to do dialysis, he has yet to have the ventilator tube removed and he's still pretty heavily sedated and not talking. The dialysis should be short term according to his doctors, and the hope is to get the ventilator tube removed tomorrow. All in all a pretty positive picture. We are a world away from where we were on Friday.

I wanted to take some time to thank people for their support and caring and I find I don't have the words to do it. Without all of you I don't honestly know how Tim, Robbie and I would have managed. I found that in one of the most critical crises we had ever had, our friends and family would not let us shoulder the load alone. It is amazing to me how much you care about our family. Thank you doesn't begin to cover it. I know the journey Tim is on is incredibly difficult both for this current battle as well as the long term one he is fighting. His odds are so much better in both thanks to all of you.

(Ok, if I keep thinking about it I'll get all emotional. For those of you who know me, I just don't do that...So I'm quitting while I'm ahead.)

I will post more tomorrow, everyone have a wonderful and blessed night. Liz

A little good news - which is a nice change

Robbie says "Daddy, I hope you come home on Sunday or Monday."

Robbie asked me to write the above sentence, he's missing Tim pretty badly and being very good. We've put a bunch of Robbie pictures in Tim's hospital room where if he opens his eyes he can't miss them. I say IF he wakes up, but it's really WHEN he wakes up at this point...A very important distinction. The good news is that Tim has been doing very well on the ventilator so they've decided to start weaning him off of it. He started this afternoon right after lunch, and they've also lightened his sedation so he will wake up a little. No word on when they will remove it, but hopefully he does well so it will be soon.

Of course, there is a little bad news as well. Tim may have to go on dialysis for a while to address some toxicity he has with all the medications they've been giving him. We'll know more about that tomorrow, and if he continues to improve that may not happen.

Thank you for all of the prayers, they have made a big difference and knowing that so many people have been thinking about him and hoping for him has helped all of us here at the hospital.

More (good news I hope) to follow. Liz

Settling out, but a ways to go

(Ok, Until Tim gets back online, everyone assume that it's me (Liz) posting)

Well, it's been kind of an up and down day today. Tim continues to fight the infection, his fever is improving, his lung function is improving so we are looking at a much more stable situation so far today. He's still on the ventilator and will be for a while. He still has some issues that are popping up that could change things but all in all it's been positive.

I want to thank everyone for their offers of support - it's been really helpful for me and Wilson, Jenn, Kate, Robbie to have good friends to rely on. (Peggy and Rebecca - Sunshine thanks you! Jim, Elena and KD - you know how grateful we are!)

Since Tim's in the CCC, I'd like to ensure I know about any visitors. We're trying to limit visitors to immediate family right now since his immune system is so weak.

I am much more hopeful and upbeat today - and Robbie keeps telling me that "I'm braver than you Mommy, just act like me." I'm trying.

Keep up the thoughts/prayers. Liz

Fun and Excitement in the Georgetown University Hospital CCC

All - Liz again, figured I'd update this since I had a few minutes.

Remind me never to challenge anyone on the number of procedures you can receive in 24 hours in the Critical Care Center at GUH. Tim was moved there last night and he's been through the wringer.

Things have gotten more serious. As it turns out, the doctors here are not sure what has caused Tim to become so ill. Tim's body is responding as though he has a systemic infection so that's how they are treating it. So he's been put on a ventilator and is under sedation. He is continuing to fight the infection and the next 24 to 48 hours are going to determine where we go from here. The doctors have not given us any indication of the timing of how this will resolve yet. We hope to have better indications based on all the tests shortly. Tim's a fighter and I believe in him so I hope to have better news tomorrow.

Keep thinking of him - it helps. Liz

A bump in the road - by Liz (per Tim's direction)

I'm posting this for Tim who is indisposed right now, but wanted to make sure everyone had the latest status. Liz

Things have gotten a little bit bumpy, even though we think the prognosis is positive. Tim started running a fever on Saturday that didn't go away. He was averaging 102-103 degrees and on Monday we ended up in the St. Mary's Hospital Emergency room. He was admitted for IV antibiotics and drugs to boost his bone marrow function. Unfortunately his White Blood Cell Count hasn't really changed since he was admitted, and it is very low (0.5 when normal is around 10).

Lots of tests after his admission seem to have narrowed it down to viral pneumonia. This is good in one sense since we know what it is, but bad in another because they don't have many drugs to treat viral pneumonia. Normally, the hospital just lets the patient's immune system respond while they provide supportive therapy. In Tim's case, his immune system is artificially supressed due to the chemo.

So, Tim is now at Georgetown University Hospital ICU with access to all of his doctors. I spoke to him and he is positive, though worried about how long he will be incarcerated (his phrase). He has some great stories about the ride to Georgetown and the ICU in general to share once he's got more energy. Your thoughts and prayers are appreciated as always.

All, currently @ st. Mary's ICU, transfering to Georgetown today. Happy birthday!
--Tim

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At St. Mary's hospital with a very low white blood cell count. Getting treatment and should be fine. Did I say this

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Did i say this was getting boring and routine? Then why am I sitting in St. Mary's emergency room? Popped a fever on

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Current Picture

Having take a certain amount of grief over the "official portrait" I had as a signature picture, let me invite further grief by posting a more recent pic, taken last night with Magic Phone. Prize to the first person to spot the logical incongruity.

Monday's Labs

Paraphrasing the Simpson's Comic Book Guy--"Worst Phlebotomist Ever!"

Monday morning, with Liz on the road, Robbie and I went to the lab for my weekly blood draw. Robbie is a little doctor-leery, so I saw this as a good opportunity to show him there was nothing to be afraid of.

The regular lab was closed, and a sign on the door redirected us to the St. Mary's Hospital. Drove over to the hospital, check into the lab, all the while explaining to Robbie that "it wouldn't hurt Daddy a bit".

The tech took us back into the drawing station, where Robbie watched raptly as she tied off the constriction band, swabbed the inside of my elbow with alcohol, and prepped the draw needle. As she moved in for the stick, I started talking Robbie through the experience.

The conversation could have gone like this: "See Robbie, there's nothing to be afraid of; this isn't going to hurt at SONOFABITCH!!!!" Seems that Stabarella, unchallenged by the sewer pipe veins on the inside of my elbow, decided to go for the style points of going for an obscure side vein. Jammed the needle in like she was a matador going the final coup de grace. I believe she went through the vein.

Instead, Robbie just heard "See Robbie, there's nothing to be afraid of; this isn't going to hurt at -urk- all (big smile)."

By the time we left, I had a knot the size of a marble under the stick site, and today it has spread into a 3" x 3" bruise.

Off to work now.