Monday, February 16, 2015

Update # 161

8 Years

Critical but stable in a drug-induced coma.

Words we have never had to use before to describe Jeff but this is his current situation.

We’ve been in contact with some of you but for everyone, here is what has happened to Jeff in the last week.

Friday the 6th of February, Jeff had his typical chest congestion with some fever. Self-medication seemed to help. Sunday the 8th, fever returned so he and Meridith went to convenient care for antibiotics. He took Monday the 9th as a sick day. Tuesday was not much better so Wednesday the 11th he went to his regular physician. I was not surprised when he contacted us from a hospital room. I knew when she saw him, he would be admitted for pneumonia. (In fact, during pneumonia mid-October, she was close to putting Jeff in the hospital.)

The Waterloo hospital noticed some fluid around Jeff’s heart on Thursday the 12th. They recommended he transfer to a larger facility such as Iowa City. Memories of May 2011 had Jeff and Meridith immediately say “St. Louis”. And no travel hassles this time. Jeff was transported by ambulance from Waterloo to StL with Meridith following in her car. Usual hospital discharge had them leaving late afternoon. Plus a return to Waterloo when the engine oil light came on in the ambulance. They wanted to take no chances due to the long distance drive so a different ambulance was then necessary.

Arrival at Barnes was after 11:00 pm Thursday the 12th and immediately docs, nurses started getting Jeff settled into a room on the 6th floor – remember that’s the Leukemia floor. (Dr. DiPersio was in San Diego for a conference and returns this week.) The BMT Fellow felt there was not as much fluid around the heart but there was still discussion of drainage. Jeff tested positive for RSV (a pneumonia) – a virus usually found in babies and young children. But can be found in people who are compromised with health issues and Jeff’s lungs fit that description. And we have learned that RSV in these people can be quite serious.

The plan, in addition to IV antibiotics, was 15 breathing treatments of two hours on and 6 hours off. Looking at Tuesday or Wednesday this week for finishing that course. We now have Dr. Castro, our pulmonologist.

Friday morning about 9:00, Jeff went into a-fib and heart meds were immediately begun to get him back into rhythm. An arterial line was inserted on the right side of his neck to get more accurate blood pressure readings plus check blood gas levels. An echo was also done. Jeff has never had any issue like this before. They decided Jeff needed a negative pressure room so he was transferred down to the 5th floor. Remember this is the transplant floor. These rooms are also more like ICU rooms. From his transplant in 2006 to his stay in 2011, the 5th floor had some remodeling. A few areas were changed to add 5 patients rooms. Jeff is in one of those rooms. Well, the rooms are smaller – for nurses to work and for family area. (Dr. DiPersio has admitted his error in requesting 5 instead of 4 new rooms!) So we now have Dr. Krone, our cardiologist.

Family friends came to visit with Jeff & Meridith Friday afternoon. Jeff even said he might need Ted Drewes! (there’s one waiting in the freezer for him) Other friends of J/M came Friday evening. While this couple was visiting, Jeff was not feeling well. At this point, Jeff had completed 1 of those breathing treatments. Meridith commented that Jeff really was very uncomfortable with the mask during that 2 hour time period. (Usually he’s been cooperative with whatever he was told to do.) After their friends left, Meridith called the nurse wanting to ask for a possible med to help Jeff with “nose congestion”. The nurse came, had a doc come and determined Jeff was getting no air and needed to immediately be put on a ventilator and put into a drug-induced coma to keep his body still to help healing. This was about 9:30 PM Friday the 13th. (obviously those 2 hour breathing treatments were stopped.) The family friends who had been there in the afternoon returned and stayed the night. One in the room with Jeff and one in the family lounge while Meridith slept a few hours. We’ll be forever grateful!!! These friends left when Meridith’s parents arrived from Iowa about 6:00 AM Saturday the 14th.

Saturday morning, they lowered the sedative a bit and Jeff was able to understand Meridith at his side – squeezed her hand and gave a thumbs up. But when the nurse began to bathe him, Jeff became too stimulated and numbers went too high so sedation was immediately increased to put Jeff back to a deeper level. Meds continued through 3 IVs in his arms. His pole has 7 different meds on it. A new all-time high.

Jeff was given a new. modern. fancy bed. This bed does things on its own. It can pat his back, move him from side to side, weigh him. Plus has a video screen on the side of the frame showing what it’s doing. You know I told Ken to take a picture cause Jeff will be wanting to see that!

Sunday morning, Dr. Castro the pulmonologist, said numbers were better than Saturday but not what he wanted. So another day on the ventilator. The sedative had again been lowered and Jeff was doing some hand communications. Dr. Castro did not want any movement so again deeper sedation. Mid-afternoon, Jeff was taken for a CT Scan. A whole crew was gathered to move the bed, move the arterial line pole, move the IV pole, plus someone to manually bag the ventilator since that huge machine can’t travel. Results should come today.

Dr. Krone, the cardiologist, also came on Sunday and discussed Jeff’s heart function. The heart muscle is weak and Jeff has lost some function. Hopefully, it will return to his former level after his body heals from the RSV. But not a guarantee. We knew years ago that the chemos would probably cause heart problems years later. Well, Jeff is at that time period where Dr. Krone usually sees people begin side effects. Since Jeff had a couple of a-fib episodes, he will now be on blood thinners the rest of his life.

Meridith’s parents returned to Iowa before the forecasted 5-9 inches of snow beginning Sunday afternoon going into Monday. Our thanks can’t be enough for their help and support.

Now, during all of this, you notice no mention of Ken and me. Well, we left Friday the 6th for San Juan, Puerto Rico. Our Southern Caribbean cruise began on Saturday the 7th with return on Saturday the 14th. (our flight home was for Sunday the 15th) We had been texting the days of congestion, convenient care, family doctor, Iowa hospitalization, ambulance to StL. Our last port was Grenada leaving Thursday the 12th at 5:00 PM and not stopping until 6:00 AM Saturday the 14th – a sea day on Friday. Meridith called my cell Friday to inform us of the a-fib episode. Our dear friends the Rusks were with us and bless Steve, his computer and internet minutes, in helping us change our Sunday morning flight to Saturday afternoon. Friday night (we’re sailing away from islands) Meridith could not reach our cell phones so called our stateroom on the ship. We had just seconds to each give Jeff our love before being put on the ventilator. The next morning, Steve again came to our rescue to find a new flight home. Different airline that got us out Saturday morning. We got to Jeff’s side a little before 5:30 PM Valentine’s Day. Thanks again to the Rusks and Surbers for their love and support to us on the cruise when Jeff’s news continued to get worse. (and yes, the cruise was great)

Drug-induced coma. Our son does not understand what those words mean. I mentioned how when they lowered the sedation, he would communicate with hand signs – thumbs up, love sign. Well, our stinker can do amazing things under “deep” sedation. And, as usual, Jeff has charmed his nurses with his humor and antics. Dr. Castro wanted that “deep” level yesterday but Jeff does what he wants. When the nurses or docs talk, Jeff gives them a thumbs up or possibly 2 thumbs up. He’ll give us the love sign or wave at us. (now we’re not talking to or touching him so he’s not stimulated!) The nurse is doing something – Jeff raises his eyebrows, shake his head or smiles (one nurse said she’d never seen anyone on a ventilator smile!) I saw him yesterday try to open his eyes and look at the wall clock. He’ll cross his legs Indian-style like he does at home. Or pat his legs like he’s bored. His IV alarm went off one time and he tapped his feet on the end bed rail in time with the alarm beeps. Guess marching band days of left, right, left, right – but no Hiltopper kick step! All this with being giving more and more deeper sedation. The night nurse said this morning that during the night when she did something, Jeff stuck out his tongue at her! Jeez, child, lie still and rest! But that’s Jeff. Get this over with so he can get back to work!

This morning’s comments from Dr. Krone were that Jeff’s heart appears better but noticed some a-fib happening during the night during a 3-hour time period. An echo was also done this morning which Dr. Krone will read later and hopefully, it will show better news.

The oxygen level will be lowered today so hopefully tomorrow he can come off the ventilator. No need to rush for us. Let’s be sure Jeff’s totally ready.

We have a room at the hotel connected to Barnes. Meridith, Ken and I can easily rotate. Ken took the hospital last night while Meridith took the hotel room. If the roads clear from our current snow, Ken will return home later this afternoon. I’ll do the hospital night stay and again let Meridith get a good night’s rest in the hotel. I had hoped to write this update last night but the hotel internet was not being cooperative. This family lounge is very close to Jeff’s room so I can sit here and see anyone enter.

I think I may have finally completed this epic saga. We are at a point that yes, is critical but they use the word stable and the word improving. We see our son acting like himself even in a dangerous situation and making us smile and laugh. So hope continues. We have no idea on time frame here at Barnes. I will do a daily update each morning. I can’t guarantee a time. It’s now 12:30 pm and I started this about 9:00 am. Stops along the way for docs and nurses to come do their thing.

You know we can’t thank all of you enough for your help, love, support, and prayers. We feel your arms around all 4 of us and know God is good.

love,

Marcia