7/29/09 – 4:00 p.m. – Update from Brent

Sorry for the infrequent blog reports lately; there just isn’t much new with Dad’s condition to report. He’s just not improving much; it’s a difficult time. He’s been breathing a little bit on his own the last couple of days and opens his eyes a few times each day, but not much else. It’s hard on the family—and especially Mom—to see him like this.

We appreciate so much all of your love and prayers on Dad’s and the rest of the family’s behalf. Mom especially enjoys reading your comments in this blog, which we print out and give to her every day. Visits to the hospital are a little bit hard to accommodate right now, so your comments here are encouraged instead, and very welcome. And we all read them, so please, feel free to continue to communicate with us that way for now.

7/26/09 – 5:00 p.m. – Update from Brent

They’ve been moving the cmH₂O level around the past few days. They reduce it to a 5 for six hours or so to “exercise” his lungs, then move it back to 8 to give him a rest, and then to 10 at night to make it easier to sleep. Dad is otherwise stable, but still very little change in his responsiveness.

7/23/09 – 1:30 p.m. – Update from Dave

Dad’s cmH₂O level (amount of pressure supplied to help him breathe) was reduced to 5 today, so that’s a good sign. He also opened his eyes a few times and responded to Dave being there. Otherwise things are about the same.

Sorry for the short posts lately, but we are now in that really slow “wait and see” stage. Now that Dad is stable with all of the other “stuff,” his progress is literally measured in weeks, not days. If you don’t see a post some days, it’s just because there is really nothing new to report. Of course, I will always post any significant changes or improvements.

Thank you all again for your amazing love and support of our family through these trying times. It is very much noticed – and appreciated.

7/22/09 – 2:00 p.m. – Update from Sue

Dad has stabilized (as far as things like blood clots and fevers and infections and gout, etc. go) to the point where the doctors are talking about alternative care options. He is still on the ventilator, however, which limits his options.

With that in mind, the doctors have decided to insert a feeding tube called a percutaneous endoscopic gastrostomy (PEG) tube into his stomach. He’s been on a feeding tube through his nasal passageway, which is customary for short-term use, but for those patients who require longer use of the tube, it is common to place the tube directly into the stomach through the abdominal wall. The surgery is simple and involves little risk or discomfort. The procedure itself only takes about 20 minutes.

Otherwise there is no change in Dad’s condition today.

7/21/09 – 1:45 p.m. – Update from Brent

Dad was slightly more responsive this morning. He opened his eyes once or twice and seemed to acknowledge us, even smiling at Mom. We are looking for small improvements and this is better than we have seen for a few days. We'll take every small improvement we can get.

7/21/09 – 3:30 p.m. – Update from Julie

Nothing much new to report today. Dad is stable and sleeping, his cmH₂O level is staying steady at an 8, so that’s pretty good. Otherwise not much change.

7/19/09 – 2:15 p.m. – Update from Steve

Dad’s had a few small problems within the last 24 hours or so, but relatively speaking, they are somewhat insignificant. He still has a small fever that they treat with Tylenol. He’s also had a bladder infection, which caused a blockage, so they removed the catheter and replaced it; that went fine. They were also concerned about the possibility of an infection in his kidneys, so they did an ultrasound, but that came back negative, which is good. Lastly, his feeding tube wasn’t quite in the right place, so they removed and replaced the tube. It’s where it’s supposed to be now.

Of much greater concern is that Dad is still mostly asleep all day. If and when the virus becomes less invasive and the swelling in the brain goes down, he should be more responsive. That’s what we’re watching, hoping and praying for right now.

7/18/09 – 1:45 p.m. – Update from Julie

Still pretty much the same with Dad today. The Physical therapy girl has been trying to work with him a little bit, but he’s not very responsive. One of her main objectives right now is to get him breathing better on his own. They measure his ability to breath on his own by the cmH₂O level, which is a measurement of the amount of pressure supplied by the ventilator. It’s currently at a 10 and their current goal is to get it down to 8. Eventually, it needs to get to a 5 or less.

Dad opened his eyes for a brief moment when Julie spoke to him, but then went back to sleep. She told him to sleep well and dream of better days. We love you, Dad!

7/17/09 -- 12:30 p.m. -- Update from Brent

No change in Dad's condition this morning. He has remained asleep most of the time for the past several days. Even the physical therapists have not been able to arouse him much. We are hoping that the sleep is doing him some good.

Have not talked to any doctors yet today.

7/16/09 – 11:30 a.m. – Update from Julie and Dave

As of this morning nothing has really changed. Dad is asleep most of the time. He’s still on the ventilator, but is mostly breathing on his own. They’ll leave him on the ventilator until he is strong enough to breathe easily on his own, without exerting a lot of extra effort. He also still has a mild fever.

Last night Julie did get some additional feedback from Dr. Hammond (the neurologist). They did an EEG last night and found that the virus is still “very involved” in Dad’s brain. It is causing an abnormal discharge in his brain that could cause seizures, so they have put him on anti-seizure meds. They are continuing the treatment with Acyclovir, which is “supposed” to slow down the virus, but it doesn’t seem to be working very well.

7/15/09 – 10:00 a.m. – Update from Mike

The lumbar test results came back last night and it didn’t tell the docs (or us) anything new. Right now it looks like it’s just the same virus that is causing the problems for Dad. His white blood cell count is still up, which is probably a result of his body fighting the virus.

His fever is down a bit today, but they continue to watch him closely, including doing additional X-rays and blood tests as necessary. The docs are slowly weaning Dad off the ventilator and as his strength and ability to breathe on his own improves, he’ll be taken completely off. Hopefully, today they’ll move him out of ICU to the intermediate care floor.

He’s been awake a little bit more today, but it’s mostly about the same. Right now it’s a little bit hard to tell just how aware he is of what’s going on around him. Hopefully, his breathing will now stabilize and his body can focus on stopping any further spreading of the virus. It’s a day-to-day process.

7/14/09 – 10:30 a.m. – Update from Sue

The results of the CT scan yesterday showed some subtle spreading of the virus in Dad’s brain into the left temporal and frontal lobes, which may explain his slow progress the past few days. His white blood cell count is also up. We are expecting the results of the lumbar tap later today.

The tracheostomy last night was successful and it’s good to see that breathing tube out of Dad’s mouth and throat. He is still on the ventilator (through the trach tube), but is again breathing mostly on his own. As soon as Dad’s strength improves, they will remove the ventilator. (One of the advantages of the tracheostomy is that if he has difficulty breathing on his own again, it’s a simple matter of hooking the ventilator back up to the trach tube, rather than intubating him again.)

Dad is relatively stable and since he’s also breathing pretty-well on his own again, they are planning to move him out of intensive care into intermediate care as soon as a bed opens up on that floor. The primary goal now is to work on his strength and also pray that the virus stops spreading. (They are still treating him with the meds to slow down that virus, but it doesn’t seem to be working as well as we would like, so prayer may be a better antidote.)

Dad’s a fighter and he hates being sick (well, most of the time), so we know he is trying his hardest to get better. The reason I say “most of the time” is because when Dad was about 11 years old he was practicing and preparing for the Spring Dance program at Quincy Elementary School and not liking it very much. About a week before the program he got the chicken pox, but readily admits he wasn’t very sick. He said, “I remember sitting on my front porch and watching my friends put on that dance program. I was glad to have the chicken pox.”

I’m sure he’d rather be dancing right now.

7/13/09 – 12:15 p.m. – Update from Brent

Dad is mostly the same this morning, really sleepy and not very responsive. The docs feel like he should be more responsive by now than he is, so they are going to do another CAT scan and depending on those results, possibly another spinal tap as well, to look for more answers.

Also, because dad still has some swelling in his hands, they did another ultrasound this morning to check for blood clots and found a small one in his right arm. Later today they are going to do the tracheostomy, which will make some things easier for him (to not have that tube down his throat) and will also allow the speech therapist to start working with him.

PT was also here this morning and had him sit up and stand up. He was pretty groggy throughout his workout today, but he did it.

7/12/09 - 1:30 pm - Update from Mike

Dr. Kerwin said that Dad was "Mr. Perky" this morning, because he was awake a little. He was somewhat responsive, but did not always seem to understand what was being said to him. He's doing well on the ventilator, which means that once they do the tracheostomy tomorrow, they should be able to quickly wean him off the ventilator and have him breathing on his own. He had a little bit of a fever last night, but no signs of infection, so they are just watching that closely. His feet look much better and the gout seems to be completely gone. They also did a chest x-ray this morning and everything was clear.

Dad seems to be getting a little stronger each day. In addition to all the usual exercises, he stood up mostly under his own power during physical therapy this morning. We hope he continues this progress and we are looking forward to getting the tube out of his mouth tomorrow.

7/11/09 – 1:00 p.m. – Update from Dave

Rounds start at 8:30 each day and they usually get to Dad by 9:00 or so. Today Dr. Kerwin didn’t get to Dad until after noon. She explained to Dave that it was because “Dad is the healthiest patient in ICU right now.” We like hearing that.

Dad got a good workout with the physical therapist this morning and was quite cooperative and responsive. In addition to the usual workout of his limbs, they had Dad sit up, mostly supporting himself, as well as stand up with support. Dave said they stood him up three times! Dad was also responsive to yes/no questions, responding with a nod or shake of his head.

The docs will begin weaning him off the ventilator a little at a time with the goal of getting him completely breathing on his own again. Returning him to ICU Thursday and putting him back on that danged ventilator was a bit of a setback, but we’re once again optimistic that he is back on the right track, making small improvements day-by-day.

7/10/09 – 10:15 a.m. – Update from Sue

Not a lot to report this morning. Dad is mostly sleeping, occasionally opening his eyes. Hopefully, he’ll start to be more alert and awake more often soon.

The docs have tentatively decided to do a tracheostomy, probably on Monday. This will allow them to remove the ventilator from his mouth and throat and provide a less-invasive breathing passage.

As I mentioned yesterday, the docs are looking for other things that could be wrong with Dad, but so far they haven’t found anything else. They did some blood tests yesterday and everything came back normal. Chances are it’s still that original virus that is causing the problems and it just takes time for Dad’s body to get rid of it.

Oh, and his feet are looking better and he’s now off the gout meds.

7/9/09 – 3:00 p.m. – Update from Dave

Today has been a roller coaster ride for everyone…but especially for Dad. There is some good news today, but also a setback in Dad’s condition and progress.

Dad was having a lot of trouble breathing this morning and the docs weren’t sure why. They decided to do a CAT scan of his lungs to see if they could figure out if something there was the source of the problem. The CAT scan didn’t reveal any problems in his lungs, however, so they started looking elsewhere.

Of course, there is always a concern that his difficulty breathing could be related to brain function, so the neurologist decided that they needed to do another CAT scan of his brain to see if there was any swelling. A positive result would have been very serious. Fortunately however, the results just came back negative, which is a huge relief! That’s the good news! The bad news is that because of the breathing problems, they’re moving Dad back down to intensive care and they are reintubating him (reinstalling the breathing ventilator), so he doesn’t have to work so hard to breathe.

Knowing that there is no swelling in his brain is encouraging; his body just needs more time to heal and to get completely rid of the virus. None of us likes that ventilator, especially Dad, but it allows him to be able to focus on getting better rather than struggling to breathe. The other reason that he is back in ICU is that they want to look for other things that may be wrong. This is obviously a challenging illness with no easy answers.

On a less important note, the docs have (finally) confirmed that he does have gout in his feet after all and also a blood clot in his left arm, but neither of those things is of any significant importance and are relatively harmless. They’re treating both ailments.

The main thing right now is the issue of Dad’s breathing. The docs will be the focused on that above almost all else. So, keep those prayers coming! I speak for mom and the whole family when I say that we are so grateful for your friendship and amazing support. Tomorrow’s a new day.

7/8/09 – 4:00 p.m. – Update from Sue

After yesterday’s flurry of activity Dad has mostly been really, really sleepy today. The hospital staff did successfully remove the chest tube and installed the PICC tube, so that’s good. And the speech therapist did stop by, but Dad was so “out of it” that he just wouldn’t wake up enough for her to do much. Dr. Peach (the neurologist) did say that Dad’s sleepiness is pretty normal for someone in his condition. She also said that his improvement has actually been faster that expected, so he’s probably just exhausted from all of the activity.

There is still a question about Dad’s swollen feet. Now they are thinking maybe it is gout after all and have doubled the gout meds. (We are learning that even these bright doctors are not sure a lot of the time.) They’re also going to do an ultrasound of his left arm, which is also swollen, to make sure he doesn’t have a blood clot.

7/7/09 – 9:30 P.M. – Update from Dave

One last update for this great day of progress. Dad has been moved OUT of ICU to the third floor (room 3211), which is considered “Intermediate Care.” Tomorrow they are going to remove the chest line and insert a PICC (Peripherally Inserted Central Catheter) line into his arm instead. This is less invasive and another step in the right direction.

Tomorrow a speech therapist is going to see Dad, not so much to begin speech therapy, but rather to assess his mental status, which is important for other things besides just speech, such as his ability to eat regular foods.

The progress is still very slow, but progress is progress, and that is very encouraging! I am positive that everyone's prayers on Dad's behalf have made all the difference.

7/7/09 – 6:00 P.M. – Update from Steve

This is a great day and definitely a big step forward for Dad. Tonight after a "bath" and some physical therapy he said (about the nurses) "tell them they're doing a great job." His voice is weak and speech is difficult but this is so very encouraging. Most promising is not just that he uttered some words but that he has cognitive reasoning and understanding of what is said to him as well as in his response. Early signs he just might remember that I owe him $150.00 (dang it.) Seems the "Gray Matter" will be calculating speed, trajectory and distance of those clay pigeons in no time! (Look out Ron) Oh I know I'm getting way ahead of myself now. Truly we are just so grateful Dad is coming back to us, and there is a long road yet to be traveled.

Timing on Brent’s' great news couldn't have been better. Minutes after posting the blog, Greg (who receives his info days late) called from the mission home, very concerned about his Grandpa. It was a relief for him to hear all this good news. The fasting, prayers and faith of Greg and all of you make all the difference. We're so thankful for the outpouring of love towards Dad and our family.

7/7/09 – 11:30 a.m. – Update from Brent

This has been an eventful morning. The docs were way late on rounds, so I just barely spoke to the doctor about a half hour ago, but a lot has happened this morning.

At about 9:30 the physical therapist gave dad a workout. She helped him exercise his arms and legs, hands and feet and his upper torso. She had him sit up, which he did on his own reasonably well. Then she had him stand up (which I couldn’t believe she was doing), but with some help he did it! He even took some very small steps. This was all really hard work for Dad, but major progress.

About 11:00 Dr. Kerwin came in and examined him and also got a full update from the respiratory doc. Dad has been breathing so well on his own that Dr. Kerwin gave the go-ahead to remove the ventilator! It’s out and it’s obvious Dad is really happy about that. He gave me an enthusiastic thumbs up and a little smile. He’s still receiving extra oxygen, but he’s breathing 100% on his own. Also, because he is breathing reasonably well and also coughing adequately, a tracheotomy is no longer being considered.

He’s been trying to talk, although it’s really more of a whisper. He said my name and answered some other basic questions. (Man, it’s good to have that tube out!) His vocal cords are going to be swollen and stiff for a while and his voice will be hoarse, but he is communicating. Overall, he’s been more awake and aware than I have seen him, so the events of today are a major step in the right direction.

As far as his swollen feet go, yesterday they tested him and the uric acid levels were normal, so they ruled out gout. However, they’re still a little unsure, so they’re still treating him for gout just in case. The swelling in his left foot is down quite a bit today, but his right foot is still red and tender.

It’s a good day!

7/6/09 – 8:00 p.m. – Story from Brent

Tonight Dave & Patty, Sue & Dale, Mom, Trish & I all arrived at the hospital about the same time. As we gathered around Dad’s bed he was not awake, but I said to him, “Hey Dad, it’s Brent, how are you doing tonight?” Then I said, “That’s a pretty stupid question, isn’t it?” And dad opened his eyes just a little and nodded his head! It was great! But then Sue said, “Dad, it’s Sue. I won’t ask you any stupid questions, ok?” And Dad smiled...just a little smile, but definitely a smile! If he could have laughed right out loud, we all knew he would have!

Hooray for small victories!

You cannot choose your battlefield
God does that for you,
But you can plant a standard
Where a standard never flew.

- Nathalia Crane

7/6/09 -- 11:15 am -- Update from Steve

Dad was visited by a new doctor this morning, Dr. Kerwin. (The intensivists in the ICU rotate each week.) She examined Dad and confirmed most of what we have been hearing from the other docs, but it was nice to also get a new perspective.

Of interest today is that they are seriously considering doing a tracheotomy, so that they can remove the ventilator tube from Dad’s mouth and throat. This would allow him to talk and eliminate the discomfort of having that big tube down his throat. They would still leave the ventilator connected via the tracheotomy to help him breathe until he shows enough strength and alertness to breathe on his own and also clear his throat. The decision regarding the tracheotomy will probably be made in the next 2-4 days.

We haven’t reported on this on this blog, but his feet have been swollen for the past couple of days. They are running tests today to determine the cause, but they suspect gout. If that’s what it is they will start treating it immediately. (Gout is very painful and Dad is reacting to that pain when his feet are touched.)

Last night the staff helped dad sit up. Dad needs to start being more alert (awake) than he has been and also show signs of increasing strength, so sitting up is a next step. As soon as possible, they would like him to also stand on his own soon, which is another reason they need to get rid of the gout.

In general, these are all small steps in the right direction. (Well, the gout is not a step in the right direction, but it is a consequence of his condition and is apparently treatable.) But overall, we are encouraged by any and all progress in the right direction.

Thank you all so much for your kind comments on this blog. We appreciate your thoughts and prayers on our behalf so much.

7/5/09 -- 10:00 am -- Update from Mike

Dad was awake when Mike entered the room this morning and remained awake for 3+ minutes. Similar to the last couple of days, he gave the same responses when the doctor checked on him -- thumbs up, lifted right arm, waved right hand and stuck out his tongue. When asked to move his left arm, it was much more difficult and he could only move fingers. The doctor did report that his physical strength seems to be improving slightly, so that is a good sign.

Hang in there, Dad! We all love you!

7/4/09 -- 9:00 a.m. -- Update from Dave

Not really any significant change today. Dad is still responding to our and the doctor’s voices and understands what he is being told, which is good. He again seemed to recognize Dave’s voice and responded positively. The doctors have been telling us that the progress is expected to be slow and that it may be more realistic to think in terms of “weekly” changes as opposed to “daily” changes. We remain optimistic that Dad will continue to progress.

Happy 4th of July everyone!

7/3/09 -- 9:30 a.m. - Update from Brent

Dad's condition is pretty-much the same this morning as it was yesterday. He responded to us when Trish and I arrived this morning and also responded to basic requests from the doctor (thumbs up, stuck his tongue out, etc.) He tries to open his eyes when spoken to and will respond to basic requests. Very encouraging!

He is still on the anti-viral meds and will be for the next couple of weeks. The doctor said that the pneumonia he had a few days ago was relatively minor and is no longer an issue. Also, he is breathing "mostly" on his own. The ventilator will breathe for him if he doesn't, but mostly it just helps him once he takes a breath on his own. The key is that Dad has to be able to clear his own airway (cough) before they can remove the ventilator. He can't do that yet.

The hospital staff is continuing the physical therapy they started yesterday, so Dad is getting some exercise. All in all, any progress is good. It's now just a matter of giving Dad time to heal.

7/2/09 – 10:45 a.m. – Update from Steve

Dad has shown some measurable, encouraging improvement this morning. Most significantly, he is “voluntarily” reacting to various stimuli, in addition to the involuntary responses of the past day or two. Here are some of the things that are new since yesterday:

• Opened his eyes when spoken to
• Tried to smile at Steve when he spoke to him
• Gave a thumbs up on command from the doctor
• Stuck out his tongue on command
• Squeezed the doctor’s hand on command
• Has tried to remove his breathing tube (I’m sure it bugs him)
• Has been moving his left arm and hand more (in the past, he mostly only moved his right hand or arm)
• He also reacted “involuntarily” to pain and his pupils are reacting to direct light

We are encouraged by this good news today. Dad still has a long, long ways to go, but measurable progress is huge and we are grateful for it.

Also, the hospital staff is going to start physical therapy with Dad. He won’t be doing the work, the staff will be doing it for him, but they want to start exercising his muscles some.

Steve asked about the ventilator, since those tubes seem to bother Dad, and he was informed that Dad has to be able to voluntarily cough hard enough to clear any liquids before they can remove it. It is also not completely certain whether Dad can breathe completely on his own.

We thank you again for all your prayers. The concern and care we are receiving from Dad’s family, neighbors and friends is overwhelming. We feel truly blessed as a family to know so many people who care.

7/1/09 – 9:00 a.m. – Update from Sue

There have been a few changes as of this morning worth noting. Dad's fever is gone and his blood pressure and random heart rate fluctuations are stable. He accepted the feeding tube yesterday OK, and they are steadily increasing the amount of nutrients they are giving him.

As Steve mentioned last night, he is now off the sedation meds, which means he has been a little bit more responsive. He reacts to certain types of stimulation (like tickling his feet) and will sometimes squeeze your hand or furrow his brow. He also seems to respond to our voices at times. These small things certainly give us hope.

He is resting comfortably and does not seem to be in any pain or discomfort. The nurses are taking really good care of him, which we appreciate. Right now we are mostly in a waiting mode. Each day is a new day and can bring changes. We look forward to even the small ones.