As my good friend Nancy D said so well last night, "Here's to 2008, it's going to be great, can't wait!"
Once again the response to prayer has been remarkable. Ron's appetite has increased noticeably. He even looks like he might be enjoying food again. Also the leak reduced its output dramatically starting Monday morning - for reference it had been putting out 200-300 ml a day and is now around 30!
He seems a little cheerier, too. Now if he'd just shave that beard....
Happy New Year to all of you, our dear friends!
Love,
Carol
Tuesday, January 1, 2008
Sunday, December 30, 2007
The Saga Continues
Friends:
I had thought we were done with this blog, but we once again need to update you on Ron's slower than expected recovery...
We had a great Christmas, just the four of us. It was so great to be home together.
He subsisted for five days on a diet of Jello and bananas. Unfortunately, Thursday found us back in Chicago for more tests. A CT scan, urine and blood tests show that he is very rundown, has a possible bladder infection and that his kidney has found other ways to excrete urine than through the bladder.
A surgical procedure (wow, how did we get back HERE again?) was performed Friday morning to try to redirect the urine through the ureter and bladder. We toddled across the street to the Wyndham Hotel to wait for Ron to feel stronger and for the predicted (but never realized) storm to clear.
As of Saturday, we are home again. Once again, we need your help with prayer. Specifically, please pray for Ron to regain his appetite in order for the healing to continue. Despite my best efforts, and doctor's orders to "eat like a 14 year old", he doesn't find anything appealing. We also need the leaking to stop and Ron to start feeling more comfortable.
We are so appreciative of all the calls and support. Thank you for continuing to follow this blog. You'll know we're done when Ron starts blogging for himself!
Happy New Year!
Carol
I had thought we were done with this blog, but we once again need to update you on Ron's slower than expected recovery...
We had a great Christmas, just the four of us. It was so great to be home together.
He subsisted for five days on a diet of Jello and bananas. Unfortunately, Thursday found us back in Chicago for more tests. A CT scan, urine and blood tests show that he is very rundown, has a possible bladder infection and that his kidney has found other ways to excrete urine than through the bladder.
A surgical procedure (wow, how did we get back HERE again?) was performed Friday morning to try to redirect the urine through the ureter and bladder. We toddled across the street to the Wyndham Hotel to wait for Ron to feel stronger and for the predicted (but never realized) storm to clear.
As of Saturday, we are home again. Once again, we need your help with prayer. Specifically, please pray for Ron to regain his appetite in order for the healing to continue. Despite my best efforts, and doctor's orders to "eat like a 14 year old", he doesn't find anything appealing. We also need the leaking to stop and Ron to start feeling more comfortable.
We are so appreciative of all the calls and support. Thank you for continuing to follow this blog. You'll know we're done when Ron starts blogging for himself!
Happy New Year!
Carol
Sunday, December 23, 2007
Key Takeaways
If you or someone you love needs surgery, here are some lessons learned - the things I wish I'd done and known ahead of time:
1. Be informed ahead of time: I wish I had known more about Ron's surgery, the risks and potential complications ahead of time. I also should have had his family health history, C-PAP settings, and names of all his physicians handy.
2. Keep a journal: The hospital staff only records the essentials - vitals, equipment used, major procedures. You are the continuity in terms of mental status, response to drugs, pain.
3. Start a blog ahead of time: It is an easy way to share your experience and helps others know best how to help you.
4. Challenge appropriately: Nurses change every 8-12 hours and the handoff is not necessarily everything you could wish. If something doesn't make sense to you, ask for a rationale.
5. Stick around, ask questions and listen closely: You can earn your way in by being as cool and composed as the staff. Your presence is helpful to the patient and can make the difference when it's time to make decisions.
6. Remind each shift how to reach you: Make it clear you want to be involved in decisions. If you have to leave, even momentarily, make sure they have the right number or know when you will be back.
7. Request a consultation: The attending physician isn't a specialist in everything. Getting the pulmonology team involved with Ron was key to his recovery. (Note: I had to suggest a consultation or it would not have happened, and I only knew to ask because Nancy suggested it).
8. Remember you have power of attorney: If you are sure a drug isn't necessary, don't be afraid to refuse it. The hospital staff has to act conservatively, your goals may not always be aligned.
9. Ask for a discharge summary: Don't leave the hospital without a written record of what happened to give to your primary care physician.
10. When all else fails, ask to speak with a hospital administrator: This definitely gets everyone's attention and gives you more say in what is going on.
Carol
1. Be informed ahead of time: I wish I had known more about Ron's surgery, the risks and potential complications ahead of time. I also should have had his family health history, C-PAP settings, and names of all his physicians handy.
2. Keep a journal: The hospital staff only records the essentials - vitals, equipment used, major procedures. You are the continuity in terms of mental status, response to drugs, pain.
3. Start a blog ahead of time: It is an easy way to share your experience and helps others know best how to help you.
4. Challenge appropriately: Nurses change every 8-12 hours and the handoff is not necessarily everything you could wish. If something doesn't make sense to you, ask for a rationale.
5. Stick around, ask questions and listen closely: You can earn your way in by being as cool and composed as the staff. Your presence is helpful to the patient and can make the difference when it's time to make decisions.
6. Remind each shift how to reach you: Make it clear you want to be involved in decisions. If you have to leave, even momentarily, make sure they have the right number or know when you will be back.
7. Request a consultation: The attending physician isn't a specialist in everything. Getting the pulmonology team involved with Ron was key to his recovery. (Note: I had to suggest a consultation or it would not have happened, and I only knew to ask because Nancy suggested it).
8. Remember you have power of attorney: If you are sure a drug isn't necessary, don't be afraid to refuse it. The hospital staff has to act conservatively, your goals may not always be aligned.
9. Ask for a discharge summary: Don't leave the hospital without a written record of what happened to give to your primary care physician.
10. When all else fails, ask to speak with a hospital administrator: This definitely gets everyone's attention and gives you more say in what is going on.
Carol
We're HOME!
It's true there's no place like home. Ariella's friends spent all day decorating and the house was glowing inside and out with lights, signs and Christmas cheer. We visited the pharmacy, loaded up on groceries and don't plan to leave the house again until after Christmas.
We have so much to be thankful for this Christmas, improving health, the love of friends and healing power of prayer. Thank you to all of you who have been following this blog and supporting us this past 3 weeks.
Merry Christmas!
Carol
We have so much to be thankful for this Christmas, improving health, the love of friends and healing power of prayer. Thank you to all of you who have been following this blog and supporting us this past 3 weeks.
Merry Christmas!
Carol
Saturday, December 22, 2007
Today's the Day
We are hopeful of being 'released' later today. It's been 18 days since we entered the hospital in on December 5. We've learned a lot about healthcare, ourselves, the incredible support of friends and the power of prayer. I think it's safe to say this was a 'life changing' experience.
We can't wait to be home.
Carol
We can't wait to be home.
Carol
Friday, December 21, 2007
Longest Night of the Year
From now on the nights are shorter and the days will be longer. Ron doesn't have much of an appetite, living on Jello and juice. He has taken two strolls around the floor (well stroll is probably overstating it, but you get the idea). He is down to just one tube, the mandatory hospital IV. Barring any new developments, he will be released tomorrow or Sunday, just in time for Christmas Eve at home.
The recovery will be many weeks, but physical therapy is impressed with his strength relative to what he has been through -- and his 'motivation'. All those years of swimming really have paid off.
David is sick with a bad cold, sore throat and swollen glands so he is quarantined at Roger and Kathi's loft. Ariella is holding the fort at home. She had good company this week with Sara, Mark and Judy. We are looking forward to getting home.
Thank you to all of you for your message, they really mean a lot.
Carol
The recovery will be many weeks, but physical therapy is impressed with his strength relative to what he has been through -- and his 'motivation'. All those years of swimming really have paid off.
David is sick with a bad cold, sore throat and swollen glands so he is quarantined at Roger and Kathi's loft. Ariella is holding the fort at home. She had good company this week with Sara, Mark and Judy. We are looking forward to getting home.
Thank you to all of you for your message, they really mean a lot.
Carol
Thursday, December 20, 2007
Thank you Janette and Kathi!
David is in Chicago with us tonight thanks to Janette Yergeau arranging this special birthday celebration and Kathi and Roger (again) offering their loft. It wasn't the best birthday, but let's HOPE it is the worst.
Carol
Carol
Happy Birthday David!
It was 14 years ago today at this very same hospital that we had the joy of welcoming David into the world. Happy Birthday David!
Getting Stronger by the Hour
Ron is in a chair, but weak and still a little groggy. We are waiting for Physical Therapy to evaluate his strength and decide what will be needed before he can go home. We feel like we have moved into the Westin, with a private bath, a bed for me and an attentive and caring nursing staff.
It was great to see Joel Kruggel from Harbert Church last night and Jim and Nancy Decorrevont today. We are opening the many cards and letters which have arrived.
We should have a better estimated time of 'release' from the hospital sometime later today. The term 'release' has a whole new meaning!
Carol
It was great to see Joel Kruggel from Harbert Church last night and Jim and Nancy Decorrevont today. We are opening the many cards and letters which have arrived.
We should have a better estimated time of 'release' from the hospital sometime later today. The term 'release' has a whole new meaning!
Carol
Wednesday, December 19, 2007
A Great Morning
Ron is weak but so happy to be 'human again'. He moves to a regular hospital room later this morning. Ari asked me to post this picture. Hope it makes you smile.
Carol
Tuesday, December 18, 2007
Lazarus Wakes
We have been talking non-stop about all that has happened in the past two weeks. Ron had no idea how seriously ill he was, and how much he has missed. He is so grateful to all of you for reading this blog, your prayers and support. We may be home by Saturday, depending on how strong he is. The next steps will be to move to a room on a regular hospital floor, get his digestive system fired up, test out his legs and determine how much physical therapy will be required to regain his strength.
I feel more tired and hungry now than I have in two weeks. I plan to sleep well tonight.
THANK YOU again for all your love and support. We have powerful testimony of the power of prayer to bring miraculous results.
Carol
I feel more tired and hungry now than I have in two weeks. I plan to sleep well tonight.
THANK YOU again for all your love and support. We have powerful testimony of the power of prayer to bring miraculous results.
Carol
Touchdown Jesus!
Well, I said he was back to normal. That turned out to the be the key. Ron self-extubated while I was at lunch and the nurse stepped away. I came back just as he pulled the end of it out. Imagine the scene...a Fellow, 3 Resident doctors, 4 nurses and an intern all in crisis mode and Ron, the partridge in the pear tree, grinning. Talking. Joking. Smiling. Feeling human again. It is a remarkable transformation.
He is currently being examined by two Ear Nose and Throat doctors for any obstructions that might explain why he needed so many intubations. He will be able to eat and drink later. He sounds horase, but WONDERFUL.
Ecstatic Me
He is currently being examined by two Ear Nose and Throat doctors for any obstructions that might explain why he needed so many intubations. He will be able to eat and drink later. He sounds horase, but WONDERFUL.
Ecstatic Me
Inches from the Goal Line
Ron passed the breathing test with flying colors! HOWEVER, his windpipe is still too swollen from 10 days on a ventilator. For perspective he needs to be at 150 cc's and he is at 100 cc's. They will try again at 4:00 this afternoon. Please pray that the swelling will decrease, or it means another night on the tube. At this point, we are suffering from complications of the complications.
On the positive side, he is looking much healthier and his lungs are recovering from what has been officially diagnosed as hospital-contracted pneumonia. The tube prevents the body from naturally protecting itself from disease, apparently this is not that uncommon with intubations.
He is being very stoic, no sedation since 6:00 AM, which if he can maintain it will be better for him in the long run. Mentally he is nearly back to "normal" -- I'll let you make your own opinion of that standard.
Things are looking up, we are hoping and praying for extubation this afternoon at 4:00. (Note: We have learned that hospital time is not even close to military time - 'four' could mean anytime between 3 and 7).
Carol
On the positive side, he is looking much healthier and his lungs are recovering from what has been officially diagnosed as hospital-contracted pneumonia. The tube prevents the body from naturally protecting itself from disease, apparently this is not that uncommon with intubations.
He is being very stoic, no sedation since 6:00 AM, which if he can maintain it will be better for him in the long run. Mentally he is nearly back to "normal" -- I'll let you make your own opinion of that standard.
Things are looking up, we are hoping and praying for extubation this afternoon at 4:00. (Note: We have learned that hospital time is not even close to military time - 'four' could mean anytime between 3 and 7).
Carol
A better Photo
Ariella didn't like the "Dragon Fly" sunglasses and has offered this more flattering photo of Ron.
Waiting Game
Ron had a restless night. They turned off the sedation at 6:00 AM anticipating a 7:00 breathing trial. After waiting unti 8:30, we learned that it is probably not going to happen until later this morning due to heavy influx of patients last night. It is very frustrating to say the least. The goal is for Ron to remain off sedation yet calm and anxiety free through the trial in order to have the best shot of passing. Please pray that he continues to be calm as he is now.
I will post later once the breathing trial is over. We are hopeful this one will be the LAST one.
I will post later once the breathing trial is over. We are hopeful this one will be the LAST one.
Monday, December 17, 2007
Time for another Photo
This was taken July 2007 on our trip to Washington DC. Don't you just love the shades?
Two Forward, One Back
Day 11 in ICU: Ron failed the breathing test today. He is still breathing too fast off the ventilator, and his trachea is swollen due to multiple intubations. Both conditions make it risky to remove the tube, especially given his history. He will remain on the ventilator another day -- or two, or three -- until these conditions improve. At some point a tracheotomy will become a better alternative than the tube, but there are as many opinions about when that point is reached as there are doctors. We are still not entirely certain why he has had so much trouble breathing in the first place.
The good news is that the pneumonia doesn't look any worse (hooray for antibiotics). However, his spirit is increasing fragile. The tube is terribly uncomfortable, even with sedation. He is restless, can't speak, and it is difficult to have hopes for removal repeatedly raised and dashed. Our biggest need is for patence, but it is getting harder and harder to keep cool give the uncertainty.
Nancy is a constant presence and wonderful advisor. We were cheered today by a visit and prayer time with Donna and Henry Lampe. The kids are back in Michigan, thanks to Judy and Mark Jacoby. Jannette Yergeau has offered to bring David to Chicago on Thursday for his birthday and we are putting plans in place for celebrating Christmas with the Decorrevonts. Roger Adams and Jamie Pellar stand ready to provide shelter at a moment's notice. We are blessed.
There won't be any further news today, but I will post again after the breathing trial early tomorrow. Please pray for the swelling to respond to steroids and and continued healing for his poor stressed lungs.
Carol
The good news is that the pneumonia doesn't look any worse (hooray for antibiotics). However, his spirit is increasing fragile. The tube is terribly uncomfortable, even with sedation. He is restless, can't speak, and it is difficult to have hopes for removal repeatedly raised and dashed. Our biggest need is for patence, but it is getting harder and harder to keep cool give the uncertainty.
Nancy is a constant presence and wonderful advisor. We were cheered today by a visit and prayer time with Donna and Henry Lampe. The kids are back in Michigan, thanks to Judy and Mark Jacoby. Jannette Yergeau has offered to bring David to Chicago on Thursday for his birthday and we are putting plans in place for celebrating Christmas with the Decorrevonts. Roger Adams and Jamie Pellar stand ready to provide shelter at a moment's notice. We are blessed.
There won't be any further news today, but I will post again after the breathing trial early tomorrow. Please pray for the swelling to respond to steroids and and continued healing for his poor stressed lungs.
Carol
Sunday, December 16, 2007
Progress
Ron had a quiet night, finally getting some rest. He has been on some powerful antibiotics. His X-rays show his lungs have improved. He is still on the ventilator, but only mildly sedated. He is completely lucid and can communicate using a letter chart, eyes and hand gestures (ITCH, How much longer?). He likes the new unit MUCH better and so do I. MICU (Medical ICU), it is noticeably less INTENSE than SICU (Surgical ICU).
FYI, there are 8 intensive care units altogether, with 23 beds per unit. I am considering writing and ethnographic research paper on the culture of ICU, I certainly have enough 'field' hours logged. This unit has a more 'laid back' personality and much more attentive residents. They are more accustomed to long term cases. They also ask questions and listen to the answers. If he has to be in ICU, feel very confident this is the right place for Ron right now.
The plan is to try extubating tomorrow and the doctor is "90% positive" it will work tomorrow, but doesn't want to risk trying today, to give it every chance of working. 24 hours post extubation, he will be moved to a regular hospital floor.
Note to self: Never let Ron go to a doctor's office alone every again. I plan to be as informed about Ron's health from now on as I am about my own. I suggest all of you do the same!
Carol
FYI, there are 8 intensive care units altogether, with 23 beds per unit. I am considering writing and ethnographic research paper on the culture of ICU, I certainly have enough 'field' hours logged. This unit has a more 'laid back' personality and much more attentive residents. They are more accustomed to long term cases. They also ask questions and listen to the answers. If he has to be in ICU, feel very confident this is the right place for Ron right now.
The plan is to try extubating tomorrow and the doctor is "90% positive" it will work tomorrow, but doesn't want to risk trying today, to give it every chance of working. 24 hours post extubation, he will be moved to a regular hospital floor.
Note to self: Never let Ron go to a doctor's office alone every again. I plan to be as informed about Ron's health from now on as I am about my own. I suggest all of you do the same!
Carol
Saturday, December 15, 2007
A new View
Ron was moved to a different ICU unit that specializes in pulmonary issues. It is still ICU, but noticeably less 'intense' than surgical ICU. He is mildly sedated and can answer yes no questions by nodding. It is now time to wait for his lungs to regain strength as he breathes for several days on the ventilator, most likely until Monday. He will get an assist from massive antibiotics and more sleep. Pray for a quiet time (to the extent possible in ICU) of healing and recovery.
I am with Ari and David, we are all doing fine after a great meal with Nancy, Jim and Alex Decorrevont in Oak Park. We are so blessed by friends. Thank you again to all of you who have provided such amazing support.
Carol
I am with Ari and David, we are all doing fine after a great meal with Nancy, Jim and Alex Decorrevont in Oak Park. We are so blessed by friends. Thank you again to all of you who have provided such amazing support.
Carol
It's Pneumonia
At least we now have a reason that can be treated. Praise God. This doesn't really change anything, at least yet, but it definitely means antibiotics are on the way. Ron is comfortable and bearing up. I am doing a little better, the power of prayer.
Carol
Carol
Subscribe to:
Posts (Atom)
