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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

Prayer request

Please pray for wisdom... for me, for the doctors. I love you all, thank you for your posts, they mean a lot and really do help.

Carol

A new perspective

Ron failed two breathing trials this morning despite being calm and lucid. He wants out of the hospital so badly, he will do anything. He tried to write some messages, can communicate clearly with yes no questions and head shakes. He needs minimal sedation, despite the tube which would be a challenge for the rest of us. He is so brave I can hardly stand to watch.

I am crying right now because reality is sinking in. He is sicker than I thought, or anyone else thought. The issue is chronic lung issues complicated by two traumatic surgeries, the second of which almost killed him (new info to me). The likely scenario is continued sedation for next few days in order to gain strength, with a breathing trial each day. It is unlikely he will pass, and they will not risk extubating again unless he clears each hurdle with flying colors. Reintubation is bad enough, they will not risk a third time. I have done my online research, which is clear on this point.

If he is still here Monday, a tracheotomy will be performed so that he can at least get to a floor faster and get some rest. Ron and I are both okay with that. No floor can take him with the tube, and the ICU is anything but restful, even the ICU doctor agrees. But it is not a problem that can be fixed. A hard dose of reality, huh?

I have requested a pulmonologist be consulted sometime today, ideally his own pulmonologist who is associated with this hospital. I will post again after that meeting, but most likely there will be no new information. Facts are facts.

My plan is to spend some time tonight with Ari and David in Oak Park and get some rest. Dealing with the possibility of Christmas in Chicago.... it is snowing now, there are worse things that could happen. At least I know what I want for this Christmas and every other Christmas from now on. Let's pray for a "Hallmark" ending.

The Basket Case

Taking Charge

I spoke with a hospital administrator last night to let them know I am not going to accept the sloppy shift changes where little information passes. They are allowing me to remain and no major decision will be made tonight without my input. As Ron's power of attorney, I have refused pain medication on Ron's behalf, over strident objections of the critical care doctor.He is not in pain and it makes him foggy. He is on minimal sedation and is completely calm and responsive. (We had a talk about the need for cooperation very quickly before they reintubated). The nurse is impressed.

The situation is that unless the CT scan that was done at 1 AM shows something wrong there is no medical issue that he is being treated for... no illness, no pain, no nothing. Just the lungs. Given that, I am not going to accept another few days of this, which will only make him sicker. Please pray for continued calm from Ron, strength for me, and listening hearts for the medical team. (We could also use a much better nurse than we had yesterday).

Stay tuned...

Carol

Friday, December 14, 2007

Back on the Tube

Ron was finally lucid, he knows about the blog, and every one of you who sent wishes and prayers. Unfortunately, his lungs were not up to the job. He was breathing too fast for the ICU teams' comfort (I disagree) and blood oxygen was slipping so a decision was made to reintubate. This means back to square one. I truly believe that it is the ICU that is making him sicker, it would make me sick to be here so long. Very artificial, uncomfortable and disorienting. His mental status is tenuous, but was coming around. I am not as confident any longer in the decisions that are being made and whether they are being made to minimize hospital risk or maximize patient well-being. After a week of seeing the dynamics of decision making and personalities, I could write a book. (Maybe I will). It is likely to be another long road back. I am distressed, it was so wonderful to have Ron back, if only briefly.

More tomorrow.

Unhappy Carol

Urgent Need for Prayer

Ron is headed quickly toward reintubation. He is lucid at last and is aware of how many of you are praying for him. But his breathing is too labored and he is getting tired. They have just given him some pain medication hoping it will calm his breathing but the likelihood is that unless he slows down fast, we are headed toward another tube. Please pray that his breathing slows immediately.

Carol

Relapse...

Ron has been delirious all day, like watching someone going through withdrawals. For the past hour, Ron has been breathing at an unsustainable rate. Fortunately we are in ICU and they were able to eliminate a lot of the possible reasons why -- EKG, chest X-ray and blood tests show no clear reason, which leaves agitation. The issue again is 'head up'. He was re-sedated and given some pain medication, but his breathing rate is still elevated. If this continues they will reintubate and go back to the ventilator. Please pray he will continue to remain calm.

Carol

Get me out of here

A new word, "Toxic Metabolic Syndrome". Today is a day for him to clear his system. He had a restless night and gave the nurses a pretty hard time and needed to be restrained. Consequently, he thinks he is in a mental hospital, "(They LIE, Shhh! They abuse you....you have no idea...). He has no concept of what day or time it is and is pretty fretful, but not in pain. He desperately wants to go home. He knows who I am, but unfortunately, they make me leave at night. If his brain can clear adequately so that he can deal with less than one-one nursing, he can leave this floor. Clarity and calm, in order to get our of 'this place' is our goal today.

The kids arrive tonight, so that should be a big spirit lifter, although I can't tell him because that implies he will still be here tonight and he gets agitated (I'm not going HOME?).

We are out of the woods, but have a ways to go along the beach. I'll post an update later today.

Carol

Thursday, December 13, 2007

The first smile

Little by little he's returning to life. He's still pretty out of it, but recognizes me and can say things like 'I love you' and 'I need a hug'. So I'm thrilled. He's uncomfortable, but not in pain. If he behaves himself tonight, we may be able to leave ICU tomorrow or early Saturday.

Steve Isham called from Tasmania and Ron was aware of the call. I was strengthened by a call and prayer time with Donna from Harbert Church. Kathi has been a rock, Sue, Liz, Janette, what would I do without you all???

With gratitude and joy,

Carol

It's OUT!

Power of prayer, you all are amazing! Ron came out of the fog and remained calm enough long enough to remove the tube. Praise God, this means he can begin the road back. He is breathing on his own with an oxygen mask.

Carol

It's all the head

Due to the episode last night, things are set back quite a bit and the likelihood is that he could be here quite a long time -- week. Ron's agitation is the entire issue now, and it is a serious one. There will not likely be an attempt to get him off the breathing tube before the weekend due to his mental state and need for sedation. Medically, he is doing great, his lungs are much better. Prayers for serenity are critical. Please pray that Ron has calmness of spirit, and stops panicking.

Personally I am now more distressed -- reeling would be the word. I was told that a tracheotomy will be performed after two weeks, and there seems to be a sudden surge of 'honesty' about the possibility of weeks in ICU. Apparently this is not that uncommon scenario in this situation. I am readjusting, but it will take a while for this news to sink in.

Carol

Ron at Thanksgiving


A recent picture of Ron I really like. I show this to the nurses so they can see what he really looks like. This was taken Thanksgiving Day in Boston, a wonderful dinner in a restaurant overlooking Boston Common. I have a picture of him now in my cell phone to show him later. Also keeping a journal as he will want to know every detail of what happened, I am sure.


Carol

Difficult Night

A quiet night until 4:00 AM. Unfortunately, no sedation was given from the time I left until 4:00 in the morning when according to reports, Ron required '4 nurses to hold him down'. They are impressed how strong he is, must be the result of all that swimming. Unfortunately, the decision was made in the heat of the emergency to return to Prophyfol (sp?), the first sedation used on Monday, which we know he doesn't respond well to. I am rather distressed about the change in orders (or failure to follow the orders in place?). We are getting things back on track but everyone seems a little leary of him now, understandably. Today will be a balancing act, trying to move him close enough to consciousness to remove the tube without him trying to remove his layers of tubular 'bling' and crawl out of bed. Please pray for his spirit to be calm and less anxious as it will speed his recovery.

On the lighter side, there are some notes of irony in all this... the man who refuses to take Advil for a headache is now the pharmacy's best customer. The resident informed me he may need some PTSD counseling when this is all through! I think I scared him when I laughed at that.

On the homefront things are straightening around. We have been blessed by Sue Fleming's presence at home with Ari this week, and Janette's continued graciousness with David. They will be coming to Chicago this weekend. Next week, my cousin Sara Podalak will come down from Grand Rapids to stay with Ari and David.

Your prayers are sustaining us, I will post again later today when we know more about whether there will be any change in the ventilator. If he gets off, it's great, but as the doctors explain, better to stay on than have to re-intubate later if it turns out he wasn't ready.

With love to all,

Carol

Wednesday, December 12, 2007

It's all in the lungs

There will be no news today. Ron is still unable to support his own breath so they have to leave the tube in for now. They have changed sedation, pulled back on one (Adavan) and added one for delirium so it will be faster to bring him round tomorrow to make another attempt. He has to be awake enough to obey commands and cough so he isn't at risk of suffocating before they can take him off the ventiltor. The Catch 22 is that when he starts to reach consciousness, he goes ballistic to get the tube out of his throat, which sends his blood pressure, heart rate and breathing soaring. The only solution is more sedation! If only he would cooperate...

Meanwhile, he is getting great care. I am scrambling to put some home support in place next week, last week before school ends for the holiday. Many friends have volunteered to give up valuable December time to be there for Ari and David, we are blessed.

More tomorrow.

Carol


Thank you to everyone - friends, family, Harbert Church - who have been so faithfully praying for Ron's recovery. I will be sure to post any new developments so check back from time to time. This is so much easier than emails. I love your emails but webmail makes it hard to respond. Please feel free to post comments.

Carol

Wednesday - Waking Ophelia

Hello everyone. I think this is an easier way for me to keep everyone up to date on Ron's progress.

Just to bring everyone up to speed, we are now exactly one week from the first surgery which removed the tumor. The tumor was 'chromaphobic renal cancer' - very early stage. This is not that rare a form of kidney cancer, but rare to be caught so early. We are blessed, God sent Ron an unrelated pain that caused him to investigate. We never found the first pain, but voila, a diagnosis that saved his life. This form of cancer only recurs 5% of the time.

Unfortunately Friday brought complications due to internal bleeding and shortness of breath. He was brought to ICU and an MRI revealed massive bleeding from the kidney. He was sedated, a breathing tube was inserted and he was put on breath support with a ventilator to bring his vitals in line.

Saturday morning, Intervention Radiology failed to find the source of the bleeding.

Sunday morning, after 11 units of blood and 2 of plasma, he was taken to OR to remove the left kidney entirely. Miraculously, they decided not to take the kidney, but cleaned out the hemotoma (collected blood), checked his spleen and abdomen and sewed him up.

Monday, bleeding stopped. Lungs still underperforming. A Bronchoscopy revealed a lot of fluid and ick which was suctioned off. Kidney leaking urine through a drain. May need a stent.

Tuesday, an attempt was made to get him off the ventilator, but he wasn't strong enough to breathe on his own and becomes agitated when the sedation is lowered. There has been no eye contact or purposeful communication since Friday.

Wednesday: Still in ICU, stepping down the sedation (but keeping the painkiller this time) gradually to see if we can test his breathing.