I came home from the hospital looking like a human pincushion and quilt, with tubes and other inserts and bandages in seven places on my body. I've come to realize that my progress should not be charted on a time line--it should be charted by when each tube/insert/bandage comes out or off. So, here's the scorecard:
My trach hole has healed on the inside, and is about 90% healed on the outside. So, I've gone from having a tube to having a small bandage there. I can talk clearly, but not for long without getting voice fatigue.
The skin graft site bandage is off for good and that place is healing nicely.
The donor site on my left leg is healing nicely, but still needs a new bandage daily--no estimate on how long that will take to heal fully.
Both surgical drains have been taken out, so I have more mobility, and a little less work for Nurse Terry each day.
The nasal feeding tube is still in place and has caused some minor emergencies. The oral surgeon said yesterday that he's "hopeful" it can come out this Monday.
The PICC line for IVs is still in, for at least another two weeks.
So, three things are out, two places are healing well, and two tubes left in for at least a week. Each time a tube/insert comes out or a site heals it takes a little less out of the long daily routine and gives me more mobility.
Oh, and I got the stitches out of my jaw area. The plastics docs did a nice job, and the scar will hardly be noticeable. And, we think they tightened up my age-sagging under-chin area a bit.
It appears that a nerve in my left foot got damaged during the operation and I have no dorsi-flexion there (raising the toes up). I can walk around the house, but it has limited my long-distance walking. It's been an adventure to find a brace to help that area, but we think we have a solution. If that works, I can get on track for my Peachtree 10K training.
Special thanks to Dr. Jim and Janet for their visit this past weekend. Jim was Doc-on-the-spot during a minor emergency with my feeding tube and helped Terry with a temp fix that kept me from going to the ER that evening. Jim and Janet were great company and provided Terry with several take-out meals that reduced that load for her. Jim gave me a "Boston Strong" cap that I took to my appt with the oral surgeon yesterday. Dr. Roser is from Boston and got a big kick out of seeing the cap.
So, progress is now being measured with the removal of tubes and the healing of other sites. By all's opinion, I am making great progress and have my fingers crossed that the feeding tube can come out on Monday--so please send good vibes for that.
Mike
Wednesday, May 28, 2014
Monday, May 19, 2014
Running the marathon, off to a good start, and an invitation
As Terry was told by the lead surgeon, this will be more like a marathon than a sprint, so we are preparing for a very long road to a full recovery--much of the extra time and effort due to the infection that surfaced during the surgery.
We met with Dr. Roser today and he is pleased with the healing progress in my mouth. We see him again a week from tomorrow. If all is still going well, the nasal feeding tube can come out and I can start eating orally. Still a long ways from enjoying green chili cheeseburgers, but it would be a start.
The home care schedule is brutal on me and Terry. Just the IV antibiotics take 9 hours a day--three, 3-hour sets, starting at 4:30 am and ending around 11 PM. In between are meds, feedings, cleanings, etc. It is consuming us right now but we hope to get some relief by having an extra IV line available tomorrow--that will cut the 9 hours down to about 5--a huge difference.
I am out of the walking boot and using adjustable sandals for my swollen left foot. It is swollen from that calf being the donor site for the new jaw tissue. Once that foot and ankle gets down to a size that can fit my running shoes, I'll start getting ready to walk the Peachtree 10K. Right now my walking distance is limited to short walks around the cul-de-sac, with no inclines allowed.
Two GSU colleagues and my three doctoral students have offered to walk the Peachtree with me on July 4th. Consider this an invitation to any locals to join us at the back of the long pack that day. It will be strictly walking--no way I'll be able to run it by then. So, let me know if you want to join us--I'll buy the "coldest beer ever" after the walk.
In the meantime, keep the Good Vibes going that progress keeps getting made, even if much slower than first estimated.
Mike
We met with Dr. Roser today and he is pleased with the healing progress in my mouth. We see him again a week from tomorrow. If all is still going well, the nasal feeding tube can come out and I can start eating orally. Still a long ways from enjoying green chili cheeseburgers, but it would be a start.
The home care schedule is brutal on me and Terry. Just the IV antibiotics take 9 hours a day--three, 3-hour sets, starting at 4:30 am and ending around 11 PM. In between are meds, feedings, cleanings, etc. It is consuming us right now but we hope to get some relief by having an extra IV line available tomorrow--that will cut the 9 hours down to about 5--a huge difference.
I am out of the walking boot and using adjustable sandals for my swollen left foot. It is swollen from that calf being the donor site for the new jaw tissue. Once that foot and ankle gets down to a size that can fit my running shoes, I'll start getting ready to walk the Peachtree 10K. Right now my walking distance is limited to short walks around the cul-de-sac, with no inclines allowed.
Two GSU colleagues and my three doctoral students have offered to walk the Peachtree with me on July 4th. Consider this an invitation to any locals to join us at the back of the long pack that day. It will be strictly walking--no way I'll be able to run it by then. So, let me know if you want to join us--I'll buy the "coldest beer ever" after the walk.
In the meantime, keep the Good Vibes going that progress keeps getting made, even if much slower than first estimated.
Mike
Thursday, May 15, 2014
In Nurse Terry's hands at home
I've been home for little more than 24 hours, but Emory Hospital seems like a lifetime ago. Once we were discharged we got a fast and confusing education in home care services, but have sorted that out and have started a routine to keep my antibiotics, nutrition, and hygiene levels where they need to be for a while.
Here's my current status. I am taking massive doses of antibiotics to fend off any new infections, getting my food through a tube, dressing the leg wound that was the donor site for the new jaw bone, and watching the progress of my trach stoma healing. Once that heals I'll have more options for daily hygiene. All of this is under the loving and expert care of Nurse Terry, who keeps us on schedule while trying to work her own schedule around my significant needs in the next 1-2 weeks.
So, here's what I have pieced together so far. The structural part of the resection seems to have gone well--the surgical team is pleased with the early evaluation of their work. The unanticipated infection has resulted in much of the extra work and concern at this time. I should be eating liquid food orally by now, but they are trying to keep my mouth as clean as possible, thus the nasal feeding tube. The first tube was inserted during the operation, but got moved somehow and it took two tries to get it right again--probably due my kicking and pain during the insertions. Easily the worst part of this that I was awake for.
I have about a 6-inch divot of flesh and bone taken from my left calf to serve as the donor tissue for the new jaw. That sucker hurts, and it's stiff. I have a big walking boot that I use to gain some stability when walking.
The crown jewel right now is a big pink and shadow-bearded face with about 200 stitches in it, and is unevenly swollen--think Herman Munster after after a bad fall. I can feel and see the swelling go down ever so slightly each day, but still a very long ways to go until they can start the next step of dental work.
A lot of things can still bring SFL back into play, so keep up the Good Vibes.
I have some pictures and stories from the hospital that I will post soon--right now I need to get a tummy full of some brown liquid I am calling food for now.
Mike
Here's my current status. I am taking massive doses of antibiotics to fend off any new infections, getting my food through a tube, dressing the leg wound that was the donor site for the new jaw bone, and watching the progress of my trach stoma healing. Once that heals I'll have more options for daily hygiene. All of this is under the loving and expert care of Nurse Terry, who keeps us on schedule while trying to work her own schedule around my significant needs in the next 1-2 weeks.
So, here's what I have pieced together so far. The structural part of the resection seems to have gone well--the surgical team is pleased with the early evaluation of their work. The unanticipated infection has resulted in much of the extra work and concern at this time. I should be eating liquid food orally by now, but they are trying to keep my mouth as clean as possible, thus the nasal feeding tube. The first tube was inserted during the operation, but got moved somehow and it took two tries to get it right again--probably due my kicking and pain during the insertions. Easily the worst part of this that I was awake for.
I have about a 6-inch divot of flesh and bone taken from my left calf to serve as the donor tissue for the new jaw. That sucker hurts, and it's stiff. I have a big walking boot that I use to gain some stability when walking.
The crown jewel right now is a big pink and shadow-bearded face with about 200 stitches in it, and is unevenly swollen--think Herman Munster after after a bad fall. I can feel and see the swelling go down ever so slightly each day, but still a very long ways to go until they can start the next step of dental work.
A lot of things can still bring SFL back into play, so keep up the Good Vibes.
I have some pictures and stories from the hospital that I will post soon--right now I need to get a tummy full of some brown liquid I am calling food for now.
Mike
Sunday, May 11, 2014
From "the trach in 910"
Well, I have seen hell from its brink, and it ain't a place I want to see again. Here's the scorecard: a 12-hour surgery, followed by 3 days in an induced coma, then 3 more days in ICU due to a bad infection, and then 4 days on a post surgical floor and it looks a discharge in 2 or 3 more days. It has been hell in so many ways that I can't even count them. The low lights have included, well, being in a hospital for nearly two weeks, oxycontin withdrawal in ICU, sometimes bad nursing care (but mostly excellent), having my head and face looking like a pink bowling ball with baseball stitches around it, and having to live the life of a hospital patient with no privacy or dignity available.
Because I had a trach tube installed as part of the surgery, I could not talk for several days, so when I pressed the call button I couldn't respond to "How can I help you?" One nurse finally figured that out and told the call nurse that if no one responds on the other end, "That's the trach in room 910 so be sure to get me right away". So, that's how I'm known to the nurses and floor staff now--the trach in 910.
But there are many highlights as we'll. Tops among those are the great medical-surgical care I've received at Emory, the iron will of Terry to carry me through this, and some special help from two of my sisters who have helped us in so many ways. Thanks, Melissa and Mer.
I am writing on an iPad so it's a bit difficult to type efficiently and will post more soon. I still have a long way to go before I'm anywhere near a full recovery, but the first corner has been turned. I will leave the hospital with a feeding tube to my nose and maybe some other tubes still in me, but being able to go home and enjoy some deck time with Terry (she'll have white wine, I'll have a shot of some brown liquid up my nose) has now become the first stage towards a near-normal life as a cancer and ORN survivor.
As always thanks to Team Mike for the good vibes to get me to to this point. You pulled me through some pretty scary stuff in the OR and the ICU.
The trach in 910
Because I had a trach tube installed as part of the surgery, I could not talk for several days, so when I pressed the call button I couldn't respond to "How can I help you?" One nurse finally figured that out and told the call nurse that if no one responds on the other end, "That's the trach in room 910 so be sure to get me right away". So, that's how I'm known to the nurses and floor staff now--the trach in 910.
But there are many highlights as we'll. Tops among those are the great medical-surgical care I've received at Emory, the iron will of Terry to carry me through this, and some special help from two of my sisters who have helped us in so many ways. Thanks, Melissa and Mer.
I am writing on an iPad so it's a bit difficult to type efficiently and will post more soon. I still have a long way to go before I'm anywhere near a full recovery, but the first corner has been turned. I will leave the hospital with a feeding tube to my nose and maybe some other tubes still in me, but being able to go home and enjoy some deck time with Terry (she'll have white wine, I'll have a shot of some brown liquid up my nose) has now become the first stage towards a near-normal life as a cancer and ORN survivor.
As always thanks to Team Mike for the good vibes to get me to to this point. You pulled me through some pretty scary stuff in the OR and the ICU.
The trach in 910
Saturday, May 10, 2014
Day 10
It's day 10 of the marathon and Mike has been improving steadily everyday. Here are the highlights for the cancer blog junkies (I'll post more later).
His ability to write legibly on the white board improved with practice and as the sedation drugs left his body to the point I was starting to regret giving him the white board to begin with.
He can talk when the trach is plugged and he is walking with a walker and assistance so we are hoping that he is released from the hospital no later than Monday.
I'll give more details later today.
The good vibes and prayers worked!
Thanks,
Terry
His ability to write legibly on the white board improved with practice and as the sedation drugs left his body to the point I was starting to regret giving him the white board to begin with.
He can talk when the trach is plugged and he is walking with a walker and assistance so we are hoping that he is released from the hospital no later than Monday.
I'll give more details later today.
The good vibes and prayers worked!
Thanks,
Terry
Sunday, May 4, 2014
Get ready for a marathon...
I've been pretty busy, so I'm just now getting to posting a blog. Briefly, Mike's surgery lasted 12 hours Thursday. Immediately following surgery he was admitted to the ICU where he remains 4 days later. The surgery itself went well, with not surprises other than the fact the surgeons discovered that his jaw was already broken. That would explain the intense and sudden pain at the start of the New Zealand trip. For the past three days they've kept him sedated to give the graft a chance to heal. He's having a couple of complications, including infection that's going to keep him in the ICU a little longer.
After Marie and I left the hospital last night (May 3) at 6:30, Mike went into A-fib and stayed that way until sometime around 5:30 this morning when he returned to normal sinus rhythm. When I got to the hospital at 6:15 he was still sedated, had good coloring and was resting comfortably. As soon as the ICU critical care docs, maxofacial docs and plastics (their term, not mine for plastic surgery) showed up around 6:45 and started poking around in his mouth, he and his assigned nurse got very agitated, BP & HR went up (hers too), breathing became labored (she was huffing and puffing) and he looked very uncomfortable. She was livid. He still has temp that is spiking up to 104 so they are changing or adding to current antibiotics. All sorts of cultures have been taken the last couple of days when the fever started so those results should be in soon. There was a little bit of drainage anterior side of the flap so they took a culture from that area this morning. A little too soon for an infection to show up there, but they are still taking precautions. Once everyone left the room, the nurse and the respiratory therapist were able to make some adjustments to the ventilator and some of the sedatives so he was calm when I left to meet Melissa at home.
The plan for today is to slowly start to wake him up. Visitors are allowed, but are going to be asked not to interact with him so that he remains calm. I think it's more him wanting to talk and breathe on his own that upsets him. (Can you picture mike being quiet?)
Whenever possible I try to remind them that he is a real person with goals and dreams so when Dr. Roser told me this morning that this was going to be a marathon, I told him and the "doogie howser" team in the room with him that Mike's running shoes for the Peachtree Road Race were delivered to the house yesterday. Everyone starting grinning and chuckling because they remembered during the post-op visit with me that I had told them that he was planning on walking the Peachtree this year. At least they know they've got a real fighter on their hands.
Team Mike - put on your running shoes and rev up the good vibes, wishes and prayers.
Please feel free to share with others.
Terry
After Marie and I left the hospital last night (May 3) at 6:30, Mike went into A-fib and stayed that way until sometime around 5:30 this morning when he returned to normal sinus rhythm. When I got to the hospital at 6:15 he was still sedated, had good coloring and was resting comfortably. As soon as the ICU critical care docs, maxofacial docs and plastics (their term, not mine for plastic surgery) showed up around 6:45 and started poking around in his mouth, he and his assigned nurse got very agitated, BP & HR went up (hers too), breathing became labored (she was huffing and puffing) and he looked very uncomfortable. She was livid. He still has temp that is spiking up to 104 so they are changing or adding to current antibiotics. All sorts of cultures have been taken the last couple of days when the fever started so those results should be in soon. There was a little bit of drainage anterior side of the flap so they took a culture from that area this morning. A little too soon for an infection to show up there, but they are still taking precautions. Once everyone left the room, the nurse and the respiratory therapist were able to make some adjustments to the ventilator and some of the sedatives so he was calm when I left to meet Melissa at home.
The plan for today is to slowly start to wake him up. Visitors are allowed, but are going to be asked not to interact with him so that he remains calm. I think it's more him wanting to talk and breathe on his own that upsets him. (Can you picture mike being quiet?)
Whenever possible I try to remind them that he is a real person with goals and dreams so when Dr. Roser told me this morning that this was going to be a marathon, I told him and the "doogie howser" team in the room with him that Mike's running shoes for the Peachtree Road Race were delivered to the house yesterday. Everyone starting grinning and chuckling because they remembered during the post-op visit with me that I had told them that he was planning on walking the Peachtree this year. At least they know they've got a real fighter on their hands.
Team Mike - put on your running shoes and rev up the good vibes, wishes and prayers.
Please feel free to share with others.
Terry
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