The homecare nurse came last evening and took out the PICC line for the IV meds. While the line weighed very little, it felt like a ton had been lifted from my arm--and our daily schedule. We are no longer tied to the 3 times a day routine and have already gone to bed earlier and slept a little later the last two nights.
As I said, progress is measured not by time, but by the removal of each line, drain, bandage, etc. that came home with me from the hospital. The only thing that's left now is the brace and compression hose for my left leg. I am going to PT twice a week and do some simple exercises at home daily. The PT prognosis is good to recover most or all of the movement in my left foot, but it will take several months.
So, Team Mike can take another bow for all the help and love you've sent our way, and stand down a bit from this past 7 weeks of extra Good Vibes. I'll continue to post regularly, so check in when you can--more funny and not-so-funny stories from my stay in the hospital coming soon.
mike
Thursday, June 19, 2014
Tuesday, June 17, 2014
90% Free!
A short note to say that the oral surgeon gave the OK to stop the IVs and to take out the PICC line.
So, no more 4:30 am wake ups and 10:30 pm stay-ups. The home nursing care folks will take out the line, hopefully in the next 24 hours.
mike
So, no more 4:30 am wake ups and 10:30 pm stay-ups. The home nursing care folks will take out the line, hopefully in the next 24 hours.
mike
Sunday, June 15, 2014
Looking for another "get out of jail" card--need Good Vibes
Nurse Terry has now administered over 100 rounds of antibiotics IVs to me since I got back home on May 13. That routine has consumed about 5 hours a day and kept both of us to the tight schedule of three rounds per day: 4:30 am, Noon:30, and 8:30 PM. We understand how important it has been to decrease my chances of getting another infection, but needless to say, we are way over this routine and would like our lives and sleep schedule back to normal.
Here's where you come in. We have an appointment with the oral surgeon this Tuesday, at which he will give us the OK to stop the IVs, or tell us we have another week or two of them. So we need your best Team Mike Good Vibes that Dr. Roser will smile when he looks into my mouth and gives us a "Get out of Jail" card for the IVs. I feel no signs of infection, so we are cautiously optimistic that they will take out the PICC lines and we can stop the IV drudgery after that.
I have been making good progress on eating orally. Boosts, yogurt, soups, eggs, cottage cheese, and ice cream are my staples, with an occasional "real food" thrown in--like chicken and some fruit. The challenge has been to meet my target of around 2,000 calories a day. My stomach is still shrunk, my appetite is still low, and eating is still a chore--so it takes a long time to chew and swallow food. I lost about 7 pounds right away, but have since put 1-2 back on, so am going in the right direction.
The drop foot is still there, but some progress to report. The PT says that are no signs of the nerve being severed, so it's a matter of the nerve healing itself, which will take 4-6 months. I was prescribed a compression hose to keep the swelling down and it has worked very well. I can now wear something other than my sandals, and that has stabilized my walking gait a bit and allowed me to walk longer distances.
Sadly, the Peachtree 10K on July 4th is not going to happen for me, but I have accepted that and we will spend the holiday at the Rupp River Resort in Ellijay and enjoy that a lot.
Big thanks to my oldest brother Jim, who had "Mikey duty" this past weekend. Between sucking down my good beer and wine, eating our food, and going to a Braves game, Jim did complete some important chores that have been lingering a while because I am not able to do them.
I'll update after the Tuesday appointment, so keep your fingers crossed for us.
Mike
Here's where you come in. We have an appointment with the oral surgeon this Tuesday, at which he will give us the OK to stop the IVs, or tell us we have another week or two of them. So we need your best Team Mike Good Vibes that Dr. Roser will smile when he looks into my mouth and gives us a "Get out of Jail" card for the IVs. I feel no signs of infection, so we are cautiously optimistic that they will take out the PICC lines and we can stop the IV drudgery after that.
I have been making good progress on eating orally. Boosts, yogurt, soups, eggs, cottage cheese, and ice cream are my staples, with an occasional "real food" thrown in--like chicken and some fruit. The challenge has been to meet my target of around 2,000 calories a day. My stomach is still shrunk, my appetite is still low, and eating is still a chore--so it takes a long time to chew and swallow food. I lost about 7 pounds right away, but have since put 1-2 back on, so am going in the right direction.
The drop foot is still there, but some progress to report. The PT says that are no signs of the nerve being severed, so it's a matter of the nerve healing itself, which will take 4-6 months. I was prescribed a compression hose to keep the swelling down and it has worked very well. I can now wear something other than my sandals, and that has stabilized my walking gait a bit and allowed me to walk longer distances.
Sadly, the Peachtree 10K on July 4th is not going to happen for me, but I have accepted that and we will spend the holiday at the Rupp River Resort in Ellijay and enjoy that a lot.
Big thanks to my oldest brother Jim, who had "Mikey duty" this past weekend. Between sucking down my good beer and wine, eating our food, and going to a Braves game, Jim did complete some important chores that have been lingering a while because I am not able to do them.
I'll update after the Tuesday appointment, so keep your fingers crossed for us.
Mike
Saturday, June 7, 2014
Da plane, boss, da plane
After four days in an induced coma I woke up in the ICU, with Terry bedside. I'm sure others were there, but don't remember who or when. After my head cleared a bit and the doctors and nurses stopped poking at me and left me alone, I asked Terry for the small whiteboard and pen so I could communicate with her. I had the full trach tube in, so could not talk.
One of my first questions was, "Was I on a plane?" Terry gave me a strange look. In my fentynal and dilaudid-driven dreams, I had a clear memory of something having gone very wrong during the surgery and I had been taken to another city on a med-evac plane. The only three people on the plane, other than the pilot I hope, were me (on an operating table), Dr. Roser, and Jeff Rupp--a close friend of mine. Once we landed in god-knows-where, I was taken to a holding area in the airport, and was being tended to by Shelly Linens, one of my department's sports medicine faculty!
I was absolutely convinced that I was not in Atlanta anymore, and my next question was "What went wrong?" The answer was that some things had gone wrong--the infection and a-fib, but I was assured I was still in Emory hospital and in good hands.
I was on fentynal patches during treatment in 2009 and had terrible nightmares from it--to the point that I was afraid to go to sleep. This time it was scary in a different way, but I felt safe once I knew what was going on.
So, remember, fentynal is not for kids...
mike
One of my first questions was, "Was I on a plane?" Terry gave me a strange look. In my fentynal and dilaudid-driven dreams, I had a clear memory of something having gone very wrong during the surgery and I had been taken to another city on a med-evac plane. The only three people on the plane, other than the pilot I hope, were me (on an operating table), Dr. Roser, and Jeff Rupp--a close friend of mine. Once we landed in god-knows-where, I was taken to a holding area in the airport, and was being tended to by Shelly Linens, one of my department's sports medicine faculty!
I was absolutely convinced that I was not in Atlanta anymore, and my next question was "What went wrong?" The answer was that some things had gone wrong--the infection and a-fib, but I was assured I was still in Emory hospital and in good hands.
I was on fentynal patches during treatment in 2009 and had terrible nightmares from it--to the point that I was afraid to go to sleep. This time it was scary in a different way, but I felt safe once I knew what was going on.
So, remember, fentynal is not for kids...
mike
Tuesday, June 3, 2014
More progress, one looming setback, time to eat!
We had a great visit with the oral surgeon yesterday. He is pleased with the healing inside my mouth--enough so that the nasal feeding tube was removed and the trach scar no longer needs covering. That means I can take showers now as long as I can keep the PICC line area dry. Terry and I will come up with some way to do that. After nearly 5 weeks of sponge baths, even many from Terry, it's time to get scrubbed down all the way.
The PICC lines for IVs will stay in for another two weeks. We have some relief with that, though. The visiting nurse put in extensions to the lines so I can reach them now to do that myself--giving Terry a break from that. I have my big test this noon to see if Nurse Terry approves my technique and certifies me for solo infusions.
No doubt, the biggie was the removal of the nasal tube, so I can start to eat orally. Same progression as post-treatments in 2009. I have started with Boosts, oatmeal, yogurt, and diluted Gatorade. The next step will be pureed soups. For all you smoothie fans out there--I hate them and will try my best to avoid them--so no lobbying for those things. Milkshakes make much better alternatives.
The trick is to make sure I can get enough calories and hydration to meet my daily needs, and to keep my mouth as clean as possible, to reduce the chances of infection.
Yesterday.
Mike (to Dr. Roser): What happens if I get infected again in that area?
Roser: We'll put in another nasal feeding tube.
Mike: You'll have to catch me first.
Roser (looking at my braced left leg): You won't be hard to catch--you'll be running in a circle.
The left leg remains the wild card in all of this. If the peroneal nerve is to come back at all, it will take a long time. That greatly reduces my chances of walking the Peachtree 10K on July 4th, to the point of needing a miracle, so you Deadheads out there know which song I need your Good Vibes to go with.
I asked Terry to take pictures along the way, especially when I came out of surgery and was in the induced coma. I am going to show you a photo she took about 24 hours after surgery, and one from yesterday after the nasal tube came out. I will warn you that the first picture is pretty gruesome--then again maybe the second one is too:
You can click on a picture to make it larger. What they show best is how far I've come since May 2, with the help of dozens of doctors and nurses, friends, family, Team Mike, and most of all Nurse Terry.
The next milestone will be the removal of the PICC lines (tucked under the sleeve on my right arm in the lower photo). That will mean the doctor thinks I am safe from further infection, and it will rid Terry and I from the three infusions every day. In two weeks, hopefully.
Special thanks go to my brother Dan and his partner Peg for their visit last weekend. They were great company for us and helped with food prep so we could host my sister Marie and her family for a smoked ribs and wings dinner on Saturday--my first cooking since late April. Well, Peg worked and Dan helped by staying out of the way. We went to the ATL Botanical Garden on Saturday with them--a great outing, but tiring for me by the end of it.
Now that our spirits are a bit brighter and I have more energy, I'll post soon some of the stories (some funny, others not so much) and more pictures from the ICU, hospital room, and home care.
Keep up the Good Vibes--still a very long ways to go.
Mike
The PICC lines for IVs will stay in for another two weeks. We have some relief with that, though. The visiting nurse put in extensions to the lines so I can reach them now to do that myself--giving Terry a break from that. I have my big test this noon to see if Nurse Terry approves my technique and certifies me for solo infusions.
No doubt, the biggie was the removal of the nasal tube, so I can start to eat orally. Same progression as post-treatments in 2009. I have started with Boosts, oatmeal, yogurt, and diluted Gatorade. The next step will be pureed soups. For all you smoothie fans out there--I hate them and will try my best to avoid them--so no lobbying for those things. Milkshakes make much better alternatives.
The trick is to make sure I can get enough calories and hydration to meet my daily needs, and to keep my mouth as clean as possible, to reduce the chances of infection.
Yesterday.
Mike (to Dr. Roser): What happens if I get infected again in that area?
Roser: We'll put in another nasal feeding tube.
Mike: You'll have to catch me first.
Roser (looking at my braced left leg): You won't be hard to catch--you'll be running in a circle.
The left leg remains the wild card in all of this. If the peroneal nerve is to come back at all, it will take a long time. That greatly reduces my chances of walking the Peachtree 10K on July 4th, to the point of needing a miracle, so you Deadheads out there know which song I need your Good Vibes to go with.
I asked Terry to take pictures along the way, especially when I came out of surgery and was in the induced coma. I am going to show you a photo she took about 24 hours after surgery, and one from yesterday after the nasal tube came out. I will warn you that the first picture is pretty gruesome--then again maybe the second one is too:
The next milestone will be the removal of the PICC lines (tucked under the sleeve on my right arm in the lower photo). That will mean the doctor thinks I am safe from further infection, and it will rid Terry and I from the three infusions every day. In two weeks, hopefully.
Special thanks go to my brother Dan and his partner Peg for their visit last weekend. They were great company for us and helped with food prep so we could host my sister Marie and her family for a smoked ribs and wings dinner on Saturday--my first cooking since late April. Well, Peg worked and Dan helped by staying out of the way. We went to the ATL Botanical Garden on Saturday with them--a great outing, but tiring for me by the end of it.
Now that our spirits are a bit brighter and I have more energy, I'll post soon some of the stories (some funny, others not so much) and more pictures from the ICU, hospital room, and home care.
Keep up the Good Vibes--still a very long ways to go.
Mike
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