Monday, January 30, 2006

My Life is an Episode of Grey's Anatomy

Today was one written for prime time. It began at 2am with a fever of 103.1. Draw more cultures - blood, urine, sputum, anyplace that could harbor bacteria. Grab the tylenol suppository. Call the resident on-call. Scurry scurry. OUCH THAT HURTS. YES I AM IN A LOT OF PAIN. NO, I DON'T KNOW WHY.

Turn on the lights. It's bright.

Wow. The wound is infected. Get the doc a staple remover. Oh my God, they're opening up my incision. There's pus. It hurts like hell. They're cleaning it with all sorts of crap. They're stuffing gauze inside me. WHERE IS MY PAIN MEDICINE?

We've already given you a bolus.


There, we are done.


Tricia's here.


No, the nurse wants to increase the amount of "food" being given through the feeding tube. DON'T EVEN THINK ABOUT IT. But that's what the doctor ordered. I DON'T CARE WHO ORDERED IT. I'LL TURN IT OFF. Ok, we'll leave it where it is.

Rest. Three hours of pain and noise, but no nurse.

12:30pm. She wants to look at the dressing on my wound. I'm still in a lot of pain and taking all of the doses I am allowed. She's looking at my wound. She's touching the gauze. She's pulling out WHAT THE HELL ARE YOU DOING??? That bitch just puled out the gause that they pack inside of me just hours ago. GO AWAY AND CALL THE SURGEON AND GIVE ME MORE PAIN MEDICINE. We've already give you a bolus. IT'S NOT WORKING!

I'm trying to be joyful. Really, I am. But it hurts so bad. There's someone here to look at my epidural site. The place where my medicine goes into my spine. But, he can't look because evything is open in front, waiting for the surgeon to pack it back in. He'll be back in an hour. I wait.

The surgeons have packed more gauze. I am miserable. The pain doctor is back. "Your epidural looks like it became dislodged sometime yesterday. You have been working without any pain relief."

Fix it please.

6pm. It's fixed. I am finally getting medicine. My temperature is 98. We are getting ready to watch Desperate Housewives and Grey's Anatomy. My wife is sitting next to me holding my hand and it feels normal. I forget about the tubes and the pain and the cancer and I cry. I want to go home. I want to play with the baby. I want to be done.

11pm. Temperature 97.8. Please let me go home soon.

Saturday, January 28, 2006

And So We Wait

Dalton and I aren't very good at plodding. We aren't patient. We don't like repetition. We require constant stimulation. Healing and recovery is plodding.

Before I get much further, I just want to ask those of you who are praying for Dalton to include a woman named Patty Horton in your prayers. Patty had surgery on the same day that Dalton did, and I've been talking with her family a bit in between visits. Patty is probably late fifties and just had her fourth brain surgery to remove a benign pituitary tumor. This one was the toughest and so far, she has not regained full consciousness. In fact, they had to restrain her because she kept pulling the iv's out of her arms. They keep doing CT scans to check the swelling in her brain, but so far, nothing has changed. Please pray that she would regain consciousness, that the swelling would stop, that her recovery would hasten, and that she would be healed of these tumors. Of course, please also pray for her mother, husband and three daughters.

In Dalton's case, there isn't much to report in the way of progress today. Thankfully, there also isn't too much to report in the way of regress. Dalton is more or less the same. Both yesterday and today, his temperature has returned to normal during the day and spiked at night. He generally feels pretty good, and would like to get out of ICU, but that won't happen until they are absolutely positive that the infection is gone. They'll be sure of that when the fever stays gone.

One thing of note is that yesterday morning, DeMeester was concerned that perhaps the new internal connection between what remained of the esophagus and Dalton's stomach could be the source of the infection, so they actually put a scope down Dalton's throat to take a peek at his new "foregut". Nice word, eh? The good news was that things looked great down there and the surgeon was very happy with the way it healing.

Unfortunately, when DeMeester came by this morning, he also noted that things were not healing so well on the outside. Both of Dalton's abdominal incisions were slighty red and swollen, so they are keeping a careful watch on them as well.

And so we wait for things to change. We wait for the fever to stay down. We wait for the right chest drain to slow down. We wait for the inision to heal. We wait for him to be able to eat. We wait.

Friday, January 27, 2006

Gotta Run

It looks like Dalton's lung has reexpanded, but Dr. Demesster believes there is an infection somewhere. The biggest concerns according to the doctor are Dalton's heart rate (140bpm) and his ongoing temperature. I'll keep you posted as we learn more.

Thursday, January 26, 2006

Everything Is Out of Whack

On Dalton's first post-op day, Dr. DeMeester's nurse dropped by to see how he was doing and offer some encouragement. Toward the end of the conversation, she offhandedly remarked, "Now, don't forget that we don't start seeing a lot of the complications until day three or four." I was kind of irked by this comment because Dalton seemed to be doing so well. Of course, she knew waht she was talking about...

It's hard to say which of Dalton's problems is most concerning. They all seem to play off of each other and yet its hard to find a single connection. Here's a brief list of everything that is out of whack.

1) Apparently, he had a collapsed right lung yesterday morning. His lungs continue to be an issue even though he is aggressively attacking the coughing and deep breathing. Pneumonia is a HUGE concern because it causes many deaths in postsurgery patients.

2) His fever came back again with a vengeance. Obviously, infection and pneumonia being the concerns.

3) His blood pressure is still unstable. It dropped again last night and they had to give him more medicine to bring it back up.

4) He has decreased urine output, but I don't know what the significance of that it.

5) His right chest tube is still draining a lot of fluid, indicating the potential of a thoracic duct leak.

It's all a bit overwhelming right now and I'm not sure what to make of it all, so I'm just trying to stay focused on the here and now. Thanks for everyone's prayers, concern, and help.

Wednesday, January 25, 2006

Gil, Lane, and Jurley

Gil, Jane and Jurley are Dalton's ICU nurses. In the past, I've used people's real names in the blog, but as I started to write this particular post, I realized that some of my thoughts might be considered, um, not so nice? So, i thought better of it and decided to use pseudonyms for these three. To be fair, the care that Dalton has received has been fabulous. For the past 36 hours, an RN has been stationed at his bedside to monitor his systems and keep him comfortable. In fact, on Monday night, it was nearly a full time job just to keep his blood pressure above 80/40. Lucky Dalton, his heart was in such good shape that the epidural which normally provides the best pain relief for an esophagectomy,lowered his "perfect blood pressure" so much that they had to hold back on the pain relief. The "Patient's Bill of Pain Relief Rights" which is posted everywhere clearly states that 1. I have a right to be free from pain and to be given medication to relieve my pain. Unfortunately, they do not include the disclaimer *** unless doing so would cause me to DIE! Consequently, Dalton was extremely uncomfortable all day yesterday until they decided that enough time had elapsed since surgery that he could have Toradol (like an advil on heroin). Since then, things have been much better for him in the pain department.

Nevertheless, what I find interesting about Dalton's care is that he has become the training patient for newbies. Gil is a very nice young man who is attentive and concerned about both doing his job well and treating the patient as a person rather than a hunk of meat. BUT, he is very green. Let's just put it this way, in the past 24 hours, we have had to remind him to reopen the valve on an iv, use the smaller connector on the j-tube to fluch it, and get all of the drainage out of the chest tube before he totals it. Thankfully, Lane is the trainer and she is very patient and very good. And, in Dalton's mind, there is a huge plus to have a male nurse - they are very careful when repositioning the catheter. Jurley on the other hand is like a bull in a china shop and has bumped him in places clearly marked fragile. She seems a bit flustered most of the time and gets very defensive when asked a question. I'm sure that the figured a healthy 38 year old guy would be the perfect "first case" for both Gil and Jurley, but the truth is that there are no easy first cases. I'm just hoping that we get a bit of a break tonight so that both of us can get some sleep.

As for Dalton's recovery goes, yesterdays concerns have stabilized and new ones have emerged. Pain, Blood Pressure, and Fever have all improved. Now, though, there seems to be some concern over decreased urine output and an abundance of drainage from the right chest drain. This drainage could indicate a thoracic duct leak which would likely need to be repaired through surgery within the week. More surgery would suck, although managing a thoracic duct leak without surgery isn't very successful (50% mortality rate)so if that's what it is, surgery here we come. Just be praying that there is no leak in the thoracic duct and that the issues with urine output are resolved. One day at a time seems to be doing the trick.

Tuesday, January 24, 2006

Quick Update

A dear friend drove me home this morning so I could take a quick shower and pack up some clothes for the next few nights. So, while I hope to sometime share the complete adventures of esophagectomy surgery, for now I wanted to be sure and give a quick rundown.

In short...

Surgery took just 6 1/2 hours as opposed to the 12 hours they had anticipated. Incredible.

They were able to safely keep about 2/3 of Dalton's stomach, therefore eliminating the need for using part of Dalton's colon. Awesome.

Blood supply to the region looked good, so they were able to reattach everything then and there. Such good news for us.

There didn't appear to be much reisdual tumor anywhere in the esophagus or surrounding regions. Everyone seemed quite amazed at the healing Dalton had experienced in the past few weeks. Praise God.

Dalton was awake and in good spirits just an hour after being closed up. He was smiling and cracking jokes and blowing all of our minds. Unbelievable

Now, about last night...

Things were a little tougher, because Dalton has three interdependent challenges that the doctors are trying to control.

1) He has a fever which probably indicates that he isn't breathing deep enough to clear out his lungs. The docs think this is due to uncontrolled pain.

2) He is battling VERY LOW blood pressure (at one point 73/26) caused by the pain meidine he is receiving through the epidural.

3. The uncontrolled pain makes it difficult for him to clear the gunk out of his lungs and get up to move.

I'll likely be staying with Dalton in ICU for the next few days, but will do my best to post occasional updates. I can't begin to thank everyone for the overwhelming support we have received. It really has been amazing.

Friday, January 20, 2006

And then, we'll take out the esophagus...

Praise God!

We'd been praying for healing and the option of having surgery and that's what we got. After meeting yesterday with both the oncologist and the surgeon, Dalton is ready to proceed with surgery this coming Monday the 23rd at 6am. The scans show an "excellent respose to chemotherapy" and just a small amount of activity in the esophageal area. Of course, there are many stories to share about the past few days, but I will probably post those in the middle of the night sometime next week.

Surgery will last 8-12 hours depending on how much reconstruction the doctor has to perform,and the usual hospital stay is 10-14 days. For those of you praying for us, please pray that the surgeon would be able to do the least radical reconstruction, leaving Dalton's stomach intact and his colon in place. Also, pray for a good blood supply to the stomach region and against infection. I'm keeping this post short for now, because there is much to do in the next 2 days. Look for more sometime Monday night...

Sunday, January 08, 2006

Get Up and LIVE

Wow. That last post was kind of depressing wasn't it? I really should have writted sooner, but...well...I guess you could say we've been having too much fun. By New Year's Eve, the silence was gone. It was replaced by talk of football, music, dreams for the future, and how to live differently. Sometime, when he is ready, Dalton may post to this blog and share the change that is happening for him both physically and mentally. For now though, just know that he is currently off all medication (including the pain killers), he is able to eat anything he wants as long as he takes normal sized bites and eats at a reasonable pace, and he is getting out of bed and living.

I know that this may be hard to believe, but he feels like a normal person on vacation. We took the boys to the San Diego Zoo on Thursday and forgot all about the pending tests and possible surgeries. Iain is finally crawling and clapping and just about standing on his own. He has developed quite the personality and is definitely able to express his opinion about things. It's been really wonderful for Dalton to have this time to hang out with Iain after being nearly invisible for six weeks.

Here are some pictures from the past few weeks. Notice that we are out and about and enjoying life. If you are a friend who wants to "visit" Dalton, don't be suprised if he declines. We simply aren't ever home. And, besides, visiting is what you do with sick people. However, if you are up to grabbing lunch or coffee or hanging out and watching a game, book it now as his calendar is filling up fast. Thanks for your prayers and your suport and your love.