Persistence Pays

Ernie spent another day in the ICU, once again largely due to his persistence. 

Although the Cancer Center has one nurse for every five patients, it seems that everyone rings their call buttons at once.  This concerned Ernie as he can not anticipate when his trach will get clogged and he will need suction.  No suction, no breathing.  Also, he is hooked up to so many tubes, it is impossible for him to go seek help.  Thus, he was determined to spend another day in the ICU where there was one nurse per patient. . 

The family galvanized behind him.  We followed Ernie's tried and true approach.   Do not argue and do not get mad but do not agree with the plan.  Simply keep repeating  your position over and over until you either convince the other party or wear them out.  So, whenever any doctor, nurse or staff member approached Ernie or one of us about moving to the Cancer Center, we repeated our mantras... "We do not feel that the Cancer Center is a safe place for Ernie right now" or "Ernie is not a typical trach patient so the family does not think he should be moved yet.", etc.  Pretty soon the subject was dropped and Ernie spent an uneventful day in the ICU.

He will be moved back to the Cancer Center sometime tomorrow but now he feels ready for the move. 

ICU

The ICU's at WFBMC are only 10 beds large.  In Ernie's ICU, only 6 of the beds are occupied.  That turned out to be a blessing, as he developed lots of issues last night that required his nurses attention.  Early in the evening, his head suddenly swelled and, along with it, his blood pressure spiked.  They gave steroids for the head and BP medicine to get his pressure down.  His blood pressure gradually dropped to normal but then kept going down more!  Finally, they gave him IV liquids to get it back to normal.  He also needed a catheter.  By about 2 AM, things were under control and he slept fitfully until rounds started at 6 AM. 

It is now up to the ICU docs and ENT docs to convene and decide whether Ernie can move back to intermediate care in the Cancer Center.  The ENT group has no idea why his head swelled and thinks he should be off the steroids the other docs gave him.   From their perspective, he is doing better than most trach patients.  Ernie is worried about his swollen head, a scleroderma renal crisis (high blood pressure can be a sign of that) and getting the attention he needs when the trach gets clogged and he needs suction.  So, he is working on the docs to let him stay in ICU another day. 

One of the most difficult parts of all this for Ernie is the temporary loss of his voice.  Although he has been writing copious notes to the docs, it is sometimes difficult for him to get the attention he needs.  The family has decided that one of us will be with him 24/7 until he can talk again.  I will be the night shift, my sister will take the morning and Ernie's brother the afternoons.  Hopefully, by Friday they will give him his permanent trach tube and he will be able to advocate for himself.   

Greetings From the Family Waiting Room

We finally made it to Tuesday morning.  I never thought any one would look forward to surgery but Ernie was definitely looking forward to this day. 

I went with him to the anesthesia area where he met the rest of his team. He has been very concerned about getting the exact kind of feeding tube he would like--a mic-key button. He had discussed this earlier with the general surgeon who said he would try to accommodate Ernie but could not promise anything.   Ernie immediately went to work on everyone, letting his desires be known.  By the time I left for the waiting room, no one dared say "feeding tube".  Instead, everyone was talking about the "mic-key button.". 

Once in the waiting room, it only took about 30 minutes before the surgeon came out to declare victory.  They were successful in intubating Ernie.  The surgeon got it on the second try!  (According to the web three strikes and you are out).  Minutes after the surgeon left to go back and work on the trach, the nurse called to reiterate that Ernie doing well.  She also told me that right before he went to sleep, she showed him his mic-key button. 

UPDATE:  The surgeon just came out to say that the trach was in!  On to the mic-key button, which is expected to take another hour.  Looks like the surgery will be done around 10:30 AM. 

UPDATE #2:  Surgery finally concluded around 12:15.  They evidently ran into some difficulties with the feeding tube.  But they did give him his wish.  He has the mic-key button.  We hope get to lay eyes on him around 1:15.  The original plan was for Ernie to spend tonight in the ICU.  We will soon hear what the doctor has now that the surgery is over. 

Count Down

Today was, thankfully, a busy day.  Ernie had lots of visitors and phone calls from friends and family as well as from the myriad of doctors that will be involved in his surgery.  These were welcome distractions. 

While the conversations with friends were more much fun than talking to the doctors, we did gain peace of mind by having the difficult, but necessary, medical discussions.  Ernie let each of the specialists--the anesthesiologists, general surgeons who will be inserting the feeding tube, and ENT doctors who will be doing the intubation and trach--know his expectations.  He told them exactly what kind of equipment he wanted and what he expected the outcome to be.  I'm not sure that these "baby docs" are used to getting this kind of direction from a patient but they listened to everything he had to say and seemed up to the task.

His scleroderma doctor from Baltimore called to check up on him and his local Internist stopped by to make sure all was well.  Knowing there are so many people in Ernie's corner, we will both sleep better tonight. 

(Day After) Halloween Scare

Ernie had such a  great day on Friday, we wondered why they insisted in keeping him at the hospital.  Saturday, about 4 AM, we figured out why.  Ernie woke up and could feel his airway becoming very constricted.  He rang the nurse, who rang the on-call doctor, who never came!!  Four hours later he got his breathing treatment.  Luckily, this incident was not as severe as the one that landed him in the ER. 

The fact that treatment took so long gave us a good scare.  The nurse was also upset about the incident and notified her supervisor.  The ENT department apologized for the "communication problem" and now Ernie has the direct dial number for the Rapid Response team. Truly fortunate that Ernie is still able to talk and advocate for himself..  At this point, the WFBMC doctors may be wishing they HAD transferred him to John's Hopkins!

Bits and Bites

The doctors and nurses have begun doling out bits of information about Ernie's surgery and recovery.  After all these years, we are familiar with this routine.  At first we found it maddening.  Why not just tell us everything at once?  But now we have come to appreciate the fact that it is easier to handle scary things if you have time to digest them a little at a time.  Here is what we know so far...

The surgery is tentatively scheduled for 7 AM on Tuesday.  There will be three doctors: Ernie's laryngologist (this is an otolaryngologist with an extra year of training) and two general surgeons.  The laryngologist has the hardest jobs of sedating and inserting the trach tube.  The other surgeons assist and then insert the feeding tube. 

Depending on how he does, Ernie may spend the first night in the ICU.  After that he will return to his room in the cancer center.  He will not be able to speak for the first few days--until the doctors change the trach tube.  Then he will be able to talk to his hearts content.  Knowing Ernie, this period of enforced silence will be difficult.  I'm trying to decide how many pens and tablets of paper I might need to supply! 

The feeding tube people will use the recovery time to get Ernie adjusted to the canned food.  They will start with a minimal amount and try to work up to a full portion before he is discharged.  Since this is a permanent tube, it is different than the one he had previously so we will also get instruction on how to use it.  There are many feeding options.  He can eat at regular intervals or he can eat while he sleeps.  We are told that there is even a backpack you can wear that holds this food so you can eat on the go if you want to.  This will be a huge improvement for Ernie.  Instead of spending 5 hours a day eating as he currently does, it will only take minutes per day of active time.

Once he is home, it will take another three weeks or so to get his strength back and for his throat to get over the trauma of the surgery and to adjust to the trach tube.  Luckily the weather forecast does not favor golfing, so he picked an excellent time to be out of commission. 

Here We Go Again

As many of you already know, Ernie is currently at Wake Forest Baptist Medical Center awaiting surgery on Tuesday morning.  He is out of intensive care and can now receive visitors and phone calls (3336-407-3800 cell #).  He is in room 907, 9^th floor, Cancer Center.  Parking deck C is the closest deck for visitor parking.  We had been planning to go back to John’s Hopkins for surgery but the doctors agreed that it is now too risky to move him. 

I have spoken to many of you in the last two days but for those I have not, here are the details.  Ernie has been gradually losing his ability to speak and swallow food.  His scleroderma (autoimmune disease which means hard skin) caused an exaggerated response to the radiation treatment for his cancer and the subsequent surgery to remove more cancer in his lymph nodes.  As a result, the skin on his neck has become harder and harder.  He also has a lot of internal swelling in his neck from the trauma of radiation and surgery.  The combination of hard skin and swelling finally landed him in the ER on Wednesday night when he had a coughing attack and could not breath.  This combined with his increasing weight loss (can’t eat enough calories to maintain his weight) and his fatigue from the sleep apnea (another side effect of the swelling in his throat) have made surgery necessary. 

He must have a tracheotomy and feeding tube inserted.  We have been assured that he will still be able to eat what he can by mouth and he will still have his current voice.  He will also be able to take a sledge hammer to his C-PAP (sleep apnea) machine—something he is very much looking forward to doing.   

He will have to be in the hospital for 5 days following surgery, so I am looking forward to welcoming him home on the November 9 or 10. All that said, this operation is more risky for Ernie than for any of us.  Because the range of motion of his head and neck is limited and the skin on his neck is so wooden, there is some small chance that they will not be able to sedate him and, if they do, there is some small chance that they will not be able to do the trach.  Thankfully, no one is worried about the feeding tube! 

I wanted to let you all know Ernie’s status as it is your support that has kept us going through this long and arduous process.  It is so comforting to know that we are not alone.