...and back to Monaco Parkway

They're tranferring Dad back to Monaco Parkway this evening - Mom & I sent him off with lots of hugs and kisses.

He'll be in room 106 (we think). Visitors welcome any time, but do be sure to wash your hands before and after - we'd like to keep him infection-free this time!!

In the next couple of days we'll be gettin Dad set up in a wheelchair, so we're looking forward to seeing how he responds to that.

-- Kristy

ed has moved to select hospital

Ed has moved to Select Hospital, which is co-located with Presbyterian / St. Luke's. Select is a long-term acute care hospital (LTAC), so it is oriented to patients who do not need such intense care. Ed is stable and his terperature is normal, based on the multiple antibiotics he is receiving, but the doctor is trying to avoid the ping-pong between hospital and nursing home by having Ed taken care of in the LTAC to make sure he's not developing some other infection.

ed's back at rose hospital

Not a very good sign that Ed went back to the hospital three days after finishing his last round of IV antibiotics. Sigh.

Marian

ed's back at monaco parkway

Ed went back to Monaco Parkway last Sunday - guess I forgot to update the blog.

He'll be on IV antibiotics for another five days, then we'll see how he does. He occasionally runs a low-grade fever, but at least not a high fever. Other than that, there's no change.

back to rose hospital

Yesterday Ed spiked a fever of 103.5 degrees, so they sent him to the hospital. Turns out that he has a urinary tract infection. Not all the tests are back, so we don't know for sure that he has no other infections going on. They're treating him with IV antibiotics, and his fever is a little better.

ed's back at monaco parkway again

Ed is doing much better and was released from the hospital late last Friday, for which we are very thankful!

He's still in room 117 at Monaco Parkway.

ed is in rose hospital with infections

Ed was running a high fever Thursday evening, and was sent to Rose Hospital. He has a recurrence of the GI bacteria "C. dif" and a urinary tract infection and an infection in the lung secretions, so he was a pretty sick puppy when he went in.

Hopefully the antibiotics will help get the infections under control and his fever will come down a lot.

ed seems to be over his pneumonia - hope it lasts

As it turned out, Ed had a very nasty pneumonia bacteria (klebsiella), so we are very thankful that he held his own and did not run any really high fever. I think that the respiratory practitioner that we have hired to work on Ed once a day has definitely made a difference, both in his individual work on Ed to clear his lungs and in training the staff at Monaco Parkway how to use an "ambulatory bag" to expand his lungs before suctioning secretions out.

Ed does seem to be over the pneumonia - tamperature is back to normal. Now we just pray that it does not come back!

ed has developed pneumonia again

So much for Ed being stable - sigh!

Anyway, they think that they've caught the pneumonia pretty early and have hopes that it will be sensitive to run of the mill antibiotics.

More prayers and good wishes are appreciated!

ed's been pretty stable

The private respiratory therapist that I hired to work with Ed daily seems to be helping. Ed has had an ear infection and a urinary tract infection, but so far (knock on wood) hasn't had an infection in his lungs.

Other than that, he's pretty much the same. Please keep your good thoughts and prayers heading his way. Thanks!

doctor says ed needs more visitors / stimulation

We talked to Ed's doctor at Monaco Parkway, and he said now that Ed is free of infection, he needs more stimulation than we are giving him. (For reference, Ed is at Monaco Parkway Health and Rehabilitation Center at 895 S. Monaco Parkway, Denver 80224, room 117 - just walk in. Main desk telephone number if you need directions is 303-321-3110.)

The doctor recommends that people come and not only talk or read to Ed, but also rub his face, shoulders, arms, and/or calves so that the sensory nerve endings are stimulated as well as the auditory nerves. I'd recommend starting with rubbing his cheeks, since he really likes that. Ed does often "flinch" and draw back when his arm or leg is first touched, but that is just a protective reaction, so please don't be put off by his initial reaction.

It would be especially good if folks could visit Ed at times other than when I visit him. I'm usually there about 5 PM - 7 PM on weekdays, late Saturday afternoon, and about noon-2 PM on Sunday. It's always nice for me to see y'all, but it would do Ed more good if we only overlap visits a little.

Since Ed is still unresponsive, it might be easier if folks took something to read, or went with a friend.

And of course, prayers and good wishes are always appreciated!

Thanks! Marian

ed is in room 117 at monaco parkway (not 128)

Ed is in a different room this time - same hallway, but on the other side.

Seems to be stable - no fever or anything ugly, thank the Lord!

ed doing better, back to monaco parkway friday

Lungs and fever doing good, diarrhea getting better, so he's good to go. Now let's just keep him that way (or better of course)!

ed is still at select hospital, reasonably stable

Ed has been doing somewhat better about keeping his temperature normal (yes!), but he developed diarrhea after the last change in medications, so they're checking to make sure that it is not caused by any new infection. They have been using some "positive air pressure" devices once a day to make sure that he is breathing deeply, and that usually results in his getting rid of a lot of lung secretions, so I would expect that this will need to be incorporated into his daily routine when he is eventually released back to Monaco Parkway.

It sounds like they will keep Ed at least several days more at Select, which we are quite pleased about.

ed back in hospital - now in select hospital

Ed had a recurrence of the bacterial infection, so this past Monday he went back to Rose medical center. The Rose case manager was very helpful and noted the concern that it is difficult to make sure a patient like Ed is stable when they send him back to Monaco Parkway rehab, so the case manager suggested that an LTAC (long term acute care facility that is in-between a hospital and a rehab center) such as Select hospital (at Presbyterian / St. Luke's where he was in February) might be able to provide a longer stabilization period.

We thought that was a great suggestion, and they verified that insurance will cover it, so today Ed was transferred up to Select Hospital. They settled him in very nicely, although his temperature did pop up to 100.7 degrees, confirming the concern that he is not really stable yet.

More to come after we have a chance to talk with one of the doctors...

it's ok to visit ed - no isolation at all

I checked when I was at Monaco Parkway today, and Ed is not in isolation of any kind. Apparently he's been on antibiotics long enough, so it's fine to stop in. (895 S. Monaco Parkway, Denver 80224)

He really seems to be breathing easier than he has for a month, and his temperature is remaining normal - yeah, team! He is opening his eyes (when he feels like it).

Thanks for continuing prayers and good thoughts. Marian

ed's doing better - back at monaco parkway

Ed has a bacterial infection that spread to blood, sputum in lungs, and urinary tract, which isn't a really good thing. It does seem that the doctor at Rose Medical Center did well to start Ed on a wide spectrum antibiotic and then take a look at what the cultures showed in a few days. The doctor switched Ed to different antibiotics based on the cultures, and Ed seems to be responding pretty well. Tbey released him from the hospital this noon, and he seems to resting quite comfortably at Monaco Parkway.

Ed will be on these antibiotics for two weeks, in an effort to make sure that the infection is taken care of. It does seem that Ed never really recovered from the infection that sent him to P/SL at the end of May, so we're hoping that this combination of drugs will do better. He was not as bad off this time, since Monaco Parkway caught it quite early and sent him to the hospital right away.

I'm not sure if visitors will need to have on gown and gloves or not - may not be necessary if you aren't touching Ed. I should be able to find out what the requirements are at Monaco Parkway tomorrow, since the staff should have had a chance by then to evaluate his records from the hospital.

Thanks for all your help and cards and goodies and prayers! Marian

sent to hospital for infection - rose medical center

Well, not exactly the happy Father's Day celebration we had planned.

When Dawn, Brian, and Jim arrived at Monaco Parkway, they said that the ambulance had just left, taking Ed to Rose Medical Center (northeast of Colorado and 8th avenue for reference). Ed's fever spiked up to 105 degrees.

Unfortunately, they tried to reach me at the last known telephone number - my work phone. They're having a little difficulty with the concept that they need to try all three of my phone numbers - work, cell, and home, since they are mutually exclusive. But the bottom line is that they did take good care of Ed, for which we are extremely grateful.

(Some folks may wish to skip this - TMI?) Turns out that when Ed was in PS/L the last week in May, he actually had a urinary tract infection that spread, rather than pneumonia type bacteria. So, the concern is that he may have something similar going on again.

Ed is hanging in there, but the high fever is tough.

Thanks for all of your good thoughts and prayers.

short skirmish with bronchitis but doing okay

Apparently Ed's antibiotic for his pneumonia wasn't specific enough to also take care of bronchitis problems, so at the end of his intravenous antibiotic, Ed developed bronchitis. So, he's on a different antibiotic now and actually seems to be doing pretty good. I'm learning a lot more about the different types of antibiotics than I ever wanted to know! Sure is nice having a local pharmacist around!

Back on the home front, my rash has actually cleared up - yeah, team! I've also just started carpooling three days a week, since I can plug in my computer and actually get some things done in the car. Hopefully that will help keep my nose above the water line.

Thanks for the cards - Ed does seem to like them!

ed's doing well and is back at monaco parkway

Ed responded well to the antibiotics. His temperature is staying down, lungs are clear, no urinary tract infection. So, he's back at Monaco Parkway - no isolation of course.

ed's been doing ok until pneumonia and hospital

Just when you think it's safe to go back in the water...

Ed really has been doing quite well - eyes open every other day or so, moves his legs when you turn the sheet back or rub his leg, startles at noises. Not improving drastically, but certainly maintaining the baby steps that he has taken.

Then on Friday his temperature went up to 104 degrees and they couldn't get it down, and he started coughing up lots of stuff from his lungs, so the doctor recommended taking him to the emergency room. The E/R doctor at our favorite hospital (Presbyterian/St. Luke's) agreed that Ed had pneumonia and wanted to admit him, but there was no room at the inn until about 10 PM - sure glad it wasn't longer!

Then on Saturday morning the hospital called me because his heart rate soared and his blood pressure dropped, so they wanted permission to administer electric shock treatments if necessary. Not a good way to wake up after just a few hours of sleep! Anyway, they were able to get his heart rate down with medication and his heart rate came up to about 100/60, so they did not need to do the shock treatments. Then on Saturday afternoon his blood pressure plummeted to 62/44, so they took him off the heart medication and started working to stabilize his blood pressure. By Saturday evening he was looking much better - blood pressure back around 93/55 and pulse in the 80's.

Thankfully he stayed stable overnight, and seemed pretty comfortable when I saw him today. He's on intravenous antibiotics, and his lungs seem to be clearing up - not coughing up as much stuff.

I don't know how long he'll be in the hospital, but normally they finish the course of intravenous antibiotics before they release him, so he'll certainly be there for a few days. Since he has pneumonia, all visitors must wear the usual mask, so it's not the most comfortable to visit right now.

Back at the ranch, I no longer itch, for which I am extremely thankful! The rash hasn't really gone away, but it looks better than it did - it's progressed from an "angry red", as my dermatologist described it, to what I would describe as a "petulant pink". Definite improvement.

Please keep us in your thoughts and prayers! They make a world of difference to us! I read the cards he receives to Ed and he seems to like them, so many thanks for them too.

my rash and dizziness better; ed holding his own

Last Monday my dermatologist agreed that it seemed reasonable to cease using the steroidal cream on my back and chest, and recommended that I just let the rash run its course and just treat the itching with anti-histamines. She also looked at the prescription and herbal supplements I was taking and recommended stopping the omeprazole / prilosec that I was taking to reduce stomach acid just as a preventive stop to avoid another ulcer. So, that's what I did. The dizziness finally got a little better on Friday after I stopped taking the anti-histamines during the day, and my rash is getting less itchy (it usually takes a couple of weeks for any particular patch to stop itching). I have patches down my arms to below my elbows and on my legs down to my ankles, and am hoping that it doesn't spread onto my feet. So, I'm definitely doing better than I was a week ago!

Ed had a slight urinary tract infection this week, which caused his temperature to be elevated Sunday and Monday, but he has gotten his temperature back down and seems to be doing reasonably well. Had his eyes open several days this week, although not open very much today. He's started "moving" his torso on occasion, not just his arms and legs, so that's a nice change.

i have an incredible rash from a drug reaction

As long as you are sending healing prayers our way, would you mind including me too? I was taking an anti-depressant, Lexapro, which is never supposed to cause any problems whatsoever. However, I developed a severe and incredibly itchy rash on my scalp, back, and chest. So, I went off of Lexapro in 3 days instead of the recommended 6-8 weeks, and the rash seemed to stop spreading. The dermatologist gave me a steroidal ointment to be applied at bedtime, and then covered with a wet T-shirt (no wolf whistles please) for the rest of the night. Unfortunately, my rash is actually still spreading - now on my arms and legs, and the steroidal ointment is making me increasingly dizzy. So, I'm heading back to the dermatologist tomorrow, and will also request a recommendation for an allergist.

In the meantime, back at the ranch with Ed, he is certainly holding his own and showing some small improvements. He opens one or both eyes most (but not all) days, jerks his leg when I touch either his right or left leg, and seems to be more "active" - moving head to right and left. Still doesn't track with his eyes or do anything on command, so I'm still practicing being patient. About up to a "C-" I think!

ed's back to opening his eyes

So, after two days of keeping his eyes shut, Ed started peeking out of his right eye, then opened his right eye wider and started peeking out of his left eye, and how he's back to opening both eyes - yeah!

Some days it is, however, a little difficult to "wake him up" - yesterday he did not initially respond much to me, but after putting the head of his bed up a little more, and rubbing his arms, he began to be much more responsive.

He also "startles" and gets goosebumps when I rub his arms or legs, whereas a few weeks ago he really didn't show much response. Little things, but we treasure them!

By the way, we have been told by someone who recovered from a coma that sometimes it was difficult to comprehend fast enough to keep up with normal speech, so we've tried to at least occasionally speak a little slower. Nothing ventured...

ed's back to keeping eyes closed

Ed has been less responsive the last couple of days, keeping his eyes closed although he still yawns, stretches, and turns his head. I have been told that this is not unusual during recovery from a coma, since the brain may have difficulty coping with returning cognizance and "retreats".

So, on Thursday Ed was very responsive. On Friday and Saturday, moderately responsive with eyes partially open. On Sunday and Monday, eyes closed.

This is essentially the pattern that we saw a week ago (eyes open on Sunday, then eyes closed Monday through Wednesday).

We're practicing patience!

i think that ed is starting to wake up

About a week ago, Ed started opening his right eye just a bit, then on Sunday he had his right eye open about halfway and his left eye open just a bit.

On Monday, Tuesday, and Wednesday evenings when I visited him, he was back to not opening his eyes,but tonight he had both eyes open about halfway and really seemed to be aware of his surroundings. Actually, it kind of frightened him when he couldn't get his breath because he needed to cough some of the fluids out through his trach. He seemed to feel better when I assured him that he had been doing this for quite some time,and he is always better within just a short time.

He still shows no real response like grasping your hand, or even straightening out his arms, since recovery from a coma starts with the eyes first and then progresses (God willing!).

So, feel free to visit Ed and explain who you are. As always, if you have any concerns that you might be ill, please delay your visit until you are feeling better.

Many, many thanks for all of your caring and prayers.

We feel incredibly blessed.

ed is doing much better - and it's always OK to visit!

Ed has been doing much better yesterday and today - keeping his temperature down where it belongs and not having much difficulty with his breathing. We are very thankful!

getting over the pneumonia

Hi all, just dropping in to report that Mom says Dad seems to be getting over his pneumonia. His temperature is down and he's breathing much easier. Still a little bit phlegmy but nothing unusual for his condition. So it sounds like it's fine to visit him (though please do refrain if you're feeling unwell since Dad's condition leaves him in somewhat fragile health).

Thank you all for all of your love & comments & visits! I'm coming back into town next-next weekend, the 24th-27th, and looking forward to visiting Dad myself. :)

--Kristy

ed has developed pneumonia again

Ed was pretty stable for a while, but he recently spiked his temperature up, so they took an X-ray and diagnosed him with pneumonia again. This time he seems to be having a harder time getting rid of the pneumonia, so prayers and good wishes would again be appreciated.

Hope you all have a joyous Easter! Dawn's mother-in-law is having me over for lunch with the rest of the family tomorrow, so that will be fun. Kristy is celebrating Tristan's birthday with his family tomorrow in Portland, and they will be heading our way in two weeks, assuming no late blizzards show up in either state!

Cheers. Marian

i believe that ed will eventually recover

I had a fascinating conversation with Dr. Bill Locy, a well-known neuro-psychologist, in mid-February, just before Ed was moved from Select Hospital to Monaco Parkway. At that time, I said that I didn't know God's plan for Ed yet. Dr. Locy told me that at some point, it would become very, very clear to me, and that my certainty of knowledge would be much greater than my current uncertainty.

I have been feeling more and more that God's plan is to have Ed recover, and I became very certain of that last Thursday. I have no idea of when or how. Ed has shown no significant improvements, but I still feel very clear about this.

So, we're just continuing to love him and talk with him and pray.

Ed is currently recovering from a relatively mild case of pneumonia, which is a common problem in his situation. They are giving him antibiotics, and he is now coughing very little. His temperature is also staying normal, which is a good sign. He definitely hasn't given up, and we haven't either.

Please feel free to visit and talk with Ed. We all very much appreciate your prayers and caring!

ed's ready for visitors at monaco parkway

Ed got the all clear from the hospital - no infection at all, temperature has been good, so he was taken out of "isolation" at the hospital and transferred this afternoon back to Monaco Parkway (same room - 128).

It's good to get him back at Monaco Parkway because they do much more in the way of physical therapy to maintain his range of motion, and it does feel cozier.

So, please feel free to stop in and talk with him. Our notebook for visitors is on one of the little tables in the corner.

I guess I should mention that Ed's resistance is pretty low, so if anyone feels at all unwell, it would be better to visit at a different time.

Continued good thoughts and prayers are much appreciated!

still in hospital

Ed developed a fever, so they kept him a little longer to check out what might be causing the fever. They thought he might have some kind of infection associated with aspirating the food into his lungs, so they gave him some IV antibiotics.

They also gave him a second type of antibiotics, and it turns out he had an allergic reaction to it, so he looked a lot like he had a pretty bad case of sunburn on Sunday.

Today he looks normal again, but is still running a lower fever, so I'm not sure what the plan is for his discharge. Since he does have a fever, he is still in isolation - mask and gloves.

By the way, the noro virus is a stomach virus that causes vomiting and diarrhea, so it's likely that the virus caused Ed to vomit and it got into his lungs.

So, continuing prayers and good thoughts are much appreciated!

safely ensconced in 509

Dad is safely ensconced in room 509 on the 5A floor at P/SL. It's actually a gorgeous room, with a fantastic view of the mountains. He is still "in isolation," which means we have to wear gloves & a gown when we visit, and that will continue until they get a test result back that says he's clean for the norovirus. The norovirus test tends to take about 2 days, but Dad is looking great actually -- his temperature is normal and his stool is pretty normal. In fact, they might transfer him back to Monaco tomorrow (he just has to not exhibit any of the symptoms, we don't have to wait for the test results for that). For now we'll enjoy our beautiful enormous room & view. :) Thank you everyone for all of your prayers and good thoughts!

here's a first -- a regular ward!

Don't you hate it when you -- or the doctors! -- make assumptions before all the tests are back. *sigh* One of Dad's tests from Monday finally came back, and he's positive for the norovirus. Which, honestly, is not at all surprising given his symptoms (you might recall that I had similar symptoms way back when), and it's kind of nice to have an explanation. However. The nursing home has refused to take him back with the virus (I assume that's a temporary thing, and that they'll take him back once they're certain that he's no longer contagious). Furthermore, Dad is exhibiting some of the symptoms again (TMI: he has diarrhea again). So, he will be transferred out of ICU today, but they're going to put him in one of the regular hospital wards at P/SL rather than sending him back to the Monaco nursing home.

I think Mom & I will go out to see Dad this evening, hopefully after he's settled into a new room. We get to explore a new wing of the hospital ooh how neat! ;) Ya'll might want to hold off on the visitations, though, until Dad gets a clean bill of health and isn't exhibiting norovirus symptoms anymore. Cuz, y'know, it's kinda ew. ;)

doing better

Dad's doing a bit better, so they're talking about transferring him out of ICU and back to the Monaco nursing home later today. He was in isolation yesterday, because they were worried that he had a virus, but he's back out of isolation now, which is much nicer. He didn't have a virus, so the issues were most probably in reaction to his meds.

In other news, Mom does indeed have an ulcer, poor thing, so hopefully we can get that healed up as quickly as possible so she can go back to drinking her lattes. :)

back to the hospital

Hey folks. Dad had some issues this morning, so we took him back to the ER at PS/L, and they'll be transferring him to ICU in a few minutes. This morning he aspirated some formula (so either his food formula backed up into his throat and then got into his lungs, or maybe he threw up), and had diarrhea, a bit of a temperature, and some blood in his urine. The current theory is that he might have some type of virus, but we're still waiting on confirmation.

I was in town this weekend, so I'll extend my trip awhile longer and stay til Dad is more stable. Please please send prayers and healing thoughts our way. Thank you so much!

nursing home staff seems to take good care of ed

We've been pleased with the care that the nursing staff has given Ed - what an enormous relief!

ed's in room 128 in monaco parkway nursing home

Ed's move was very uneventful, once we got to it - originally planned for 11:00 AM, but ended up closer to 5:00 PM. May have turned out to be a godsend, because a private room opened up and they put Ed into it, rather than sharing a room, for which we are very grateful!

Feel free to visit!

nursing home was previously known as "the mariner"

think we found a nursing home for ed

We have talked with and visited Monaco Parkway Health/Rehab and they are used to dealing with a coma patient with a tracheotomy, which has been the most difficult problem, and we think it's a good nursing home.

They have not given a final "yes" to Ed, since they have not seen his medical records, but Select Hospital expects to transfer Ed around 11:00 tomorrow, so they think that all the necessary arrangements can be made.

Cathy Mowry is going with me tomorrow to Select Hospital, and we'll meet Jim Whiting (Brian's dad) there, so we will try to work around the useless case manager that should have been working on Ed's case.

Here's the info on Monaco Parkway:
895 S. Monaco Parkway, 80224
(south of the intersection of Leetsdale and Monaco)
303-321-3110

As for me, I was a good kid and went to see my doctor who is having some blood tests run to see if I have an ulcer or liver problems. More to come.

Many thanks to all of you!

need prayers to find a different nursing home

On Monday, Hallmark nursing home re-evaluated Ed and decided that they would not accept him.

I did not handle the stress well, and ended up in the emergency room. Thankfully, Dawn, Brian, and Jim were there to get me over to the E/R.

So, we need to find Ed a good nursing home that has a room available NOW and will accept someone in a coma and on a trach collar and is a good place.

We were given the name of one other nursing home that would accept him, and it is not a place we would want to have Ed cared for, so that was pretty discouraging.

The hospital said that they could delay moving Ed until Thursday (originally they expected to move him yesterday), so we don't have much time.

We would very much appreciate suggestions.

Please keep us in your thoughts and prayers - we very much appreciate them!

Thanks.

moving ed this week

We will be moving Ed sometime this week to the Hallmark Nursing Center at 3701 W. Radcliff, 80236, just south of the intersection of Quincy and Lowell. The telephone number is 303-794-6484. Dawn, Brian, Jim (Brian's Dad) and I visited Hallmark today, and we are very pleased. Ed should feel very much at home, since it's right across the street from where we square dance with the Rolling Wheels.

Ed will have a private room at Hallmark, and they have 24-hour visiting (you just need to buzz to have the receptionist open the door), so please continue to come visit and talk to Ed, and of course keep him in your thoughts and prayers.

Many thanks from all of us!

meeting with case worker

The case worker on Dad's case asked to meet with Mom today at 3 (Denver time), presumably to discuss how long they'll keep Dad at Select before we need to move to a new facility. If you happen to read this post before that time, prayers for serenity on my mom's part and wisdom & good bedside manner on the case worker's part would be greatly appreciated.

decreasing frequency of updates

Ed continues to be quite stable. We continue to pray for a miracle, and appreciate your thoughts and prayers.

We will expect to post here less frequently, unless something - good or bad - happens, in which case we will post ASAP.

how we expect to proceed

We aren't sure exactly where we will be going in the next few weeks, but our plan is to sustain Ed until at least three months after his stroke, since that is the far end of the period during which a stroke victim should regain consciousness. The three month period would take us to about April 5.

It will take a miracle for Ed to regain consciousness, but we do believe in miracles, so we are going to hang in there. We continue to visit Ed and talk to him, since we still feel his presence.

If you would like to visit Ed, please feel free to do so. We very much appreciate all your thoughts and prayers.

just stopped by to hug ed and pray

bad news

Dr. Silo examined Ed today and said that he could offer no hope for his recovery. Ed's brain stem is severely damaged - only the very lowest part of the brain stem is functioning, which is the part that controls blood pressure and breathing. The middle and upper part of the brain stem is not functioning, and does not recover.

big day delayed

Well, Dr. Silo didn't make it in to see Dad today, so he's supposed to come by tomorrow sometime after noon. We're a little frustrated but still glad that the doctor will make the time to evaluate Dad. Our nerves are stretched a little thin, as you might imagine, so prayers for patience would, again and as always, be appreciated.

big day tomorrow

One of the specialist doctors, Dr. Silo, will be in tomorrow morning to evaluate Dad. He comes with extremely high recommendations, including one person who said that "If Ed is in there, the doctor will find him. And if he's not there, he'll tell you."

So, we're a little nervous. We all believe that Dad is still in there, somewhere. But, we don't know how best to show that to someone else (a.k.a., an "outsider"). Mom is going in to the hospital early to be there when the doctor comes by. The whole family has observed that Mom can get Dad to react in unique ways, ways that he doesn't react to any of the rest of us, and we really believe that that's because their connection is still there...because he is there. However, Dad's reactions have been a little hard to predict -- some days he's pretty "twitchy", and other days he just seems tired out. Also, we know that he doesn't do a lot of "purposeful" movement (yet), like jerking away from pain stimulus or dilating his pupils or opening his eyes. On the other hand, Dad apparently didn't open his eyes much after the aneurysm surgery, even before the stroke and coma. We're hoping that, for purposeful movement, Dad will relax his arm when Mom tells him to, as he was doing yesterday (and tonight!), and that that will be enough for the doctor to see some hope for us.

We'd like to ask for a whole bunch of prayers/thoughts:

• Responsiveness from Dad. Heck, if he'd just wake up before the doctor gets there, then everything would be dandy! ;)
  
• Serenity for Mom. This is not a command performance on her part, and if Dad isn't twitchy then we'll just figure something else out.
• Knowledge and faith for the doctor. Knowledge so that he can see what is best for Dad and the rest of the family. Faith because scientific knowledge is not all that there is to this world. And we have to believe that Dad's fate will be decided by more than just his actions tomorrow morning.

Thank you, everyone. I'll let you know how the meeting goes as soon as I find out tomorrow (I'm back in Portland again, so my knowledge is once again being relayed via Mom & Dawn).

birthday wishes

Today is Mom's birthday! And the 28th of this month will be Dad's birthday. It's a decadal birthday this year for them...yes, they're both turning 30! Again. ;)

We were thinking that if Dad woke up today, that would be an awesome birthday present for Mom! But, I guess it'll have to be a belated present. One or two days late wouldn't be so bad... ;) Come on Dad, you can do it!!! WAKE UP WAKE UP WAKE UP!

maybe ed relaxes an arm when i tell him

One of the therapists suggested that a "purposeful" response from Ed would be to relax his arm when we tell him to, since his muscles are pretty contracted as a rule. It seemed like Ed was able to relax his left arm sometimes when I told him to do so, which is a little bit of encouragement that we could really use. So, we'll see if we can get him to continue this tomorrow.

no noticeable changes

So we'll just keep hoping and praying.

a few more eyelid twitches i'm told

A pesky little transmission problem and a delightful ride with a very helpful tow truck driver to meet Dawn and Brian and our spare car resulted in a late visit with Ed today, so he was pretty sleepy for me. Or maybe he was just tired from trying to cheer for the Cardinals in the SuperBowl!

I understand that he was quite "twitchy" with his eyelids when folks were talking with him before I arrived - now we just need him open those baby blues!

extra chairs and a new notebook for visitors

Extra chairs are hard to come by in the LTAC, so we've put a couple of folding chairs into the coat closet right next to the door. There is also space to hang up your coats in the closet. All the comforts of home!

We've also put a notebook out for folks to let Ed know that you were there - it'll give folks more space than the poster board. We left the notebook and the magazines on the little table by the bulletin board when we left, but the nurses may need to move things around, so you may need to hunt a little. Today the magazines were in the top drawer of Ed's bedside table.

Ed's rash is looking much better today, so we're grateful for that.

If anyone is having problems posting to the blog, you might try internet explorer rather than firefox - at least that's the rumor!

Thanks for stopping by and saying hi to Ed!

a few notes on visiting

I forgot to mention -- all hours are visiting hours at Select Specialty. :) If you arrive after 8 pm (or before 5 am), you'll need to use the ER entrance, and get a visitor's pass by talking to the guard on duty there, but that's about it.

If you're reading or talking to Dad, try to speak up a bit -- we've noticed that the neurosurgeon, when asking Dad to do something like keep his eye open, speaks very loudly right into his ear.

A few of Dad's visitors have left some reading material in the room, including a number of Guideposts magazines and a book of Robert Frost's poems: thank you!! Feel free to bring your own, of course, or just chat about your day. We also have a CD player in the room -- if it's too loud when you come in, feel free to pause it or turn it down. In a couple of days we should have a DVD player in there too, and same goes --feel free to pause it when you come in, and hit play on your way out.

movin' on up

Dad has officially moved up in the world!, to Select Specialty Hospital on the 5th floor of P/SL. He's in the "B" wing, so to visit him now, follow signs to the B elevator, take it to the 5th floor, and he's in room 5204! (Well, I'm only really sure about the "04" part of his room number, but that should be enough to get you to the right place. I'll come back and correct this post later if I figure out that it's wrong.)

The nice thing about Select is that they do "passive" physical therapy. Mom & Dawn have more information about all this, but the range of things that they can do is pretty impressive. I think they plan to start by having Dad sit upright in a chair, rather than reclined in a bed, since "upright" is a more natural position for the brain to settle into its proper place in the skull cavity. I've heard that they can also do passive standing and even walking, though I think that's a ways off for us yet. For now, I think they will just move Dad's arms & legs about, in motions that would be like weight-lifting if he were able to actively, rather than passively, participate.

Dad wasn't very "twitchy" today, which is always discouraging even though we sort of expected it -- we figured that the move from ICU to Select would wear him out. He did, however, move his head to the side quite quickly and strongly when I leaned down to kiss his cheek goodnight. It really startled me! Dad hit me in the face, with his face! We think it was probably just that my hair was tickling his (right) cheek, since I was able to get Dad to replicate the movement by moving my hair across his face. It's still very hard for us to tell what's reflex and what's intentional, which is part of why I'm praying so hard for him to open his eyes. But, we'll just keep hanging in there, hoping and praying and thanking God every day for all of you! The cards, comments, visits, food, hugs, caring and prayers are definitely a part of what's keeping us going. Thank you.

hats off!

After the surgery on Saturday to put Dad's brain flap back in, they'd re-wrapped his head in gauze. But, today I walked in to see that they'd taken his turban-hat back off! Yay! I much prefer seeing Dad that way -- much more like himself, crazyhair and all!

I also heard that they're looking at tomorrow to transfer Dad up to the LCAT, which we think is great news. He's off the ventilator, his O2-saturation levels are fantastic, his heart rate and blood pressure are pretty normal, they should be able to get him back up to goal levels (68 ml/hr) for his feeding sometime tonight, and his temperature is actually a little below average! He's doing ok on the Lasix -- they're getting more liquid out of him, but his legs and now hands and maybe neck are quite swollen, sigh.

He's still flickering his eyelids, which we like to see, and starting to move his mouth+tongue more. A couple of times, I closed his mouth by pushing his chin up, then waited a few seconds and let go of his chin...and Dad would close his mouth on his own for us. We cheered and clapped for him, and were silly and sang him the "Chin Up" song from Charlotte's Web:

Chin up, chin up
Everybody loves a happy face
Wear it, share it
It’ll brighten up the darkest place
Twinkle, sparkle
Let a little sunshine in
You’ll be on the right side
Looking at the bright side
Up with your chinny chin chin!

On her way home from the hospital, Dawn said that Dad was less active while she and Brian were there, so it does seem to come and go. If he's not too twitchy while you're there, it may just be that he's not "warmed up" yet or "tired out" from maybe being active earlier. They also said there was some blood in his urine, which may be an effect of the Lasix?, but still, it'd be nice if his whole system would just go back to normal.

lasix

Okay folks, it looks like Dad is slated to stay in the ICU for at least one more day. His legs continue to be super-swollen, and he's not peeing enough (TMI, sorry!!!), so they're giving him Lasix today.* Hopefully that works to reduce the swelling, without causing any side effects.

While we certainly appreciate the small steps that Dad is making -- it's much better than sliding backwards!!! -- we would really really really love to see him open his eyes. That would seem like a huge miracle to us, and would be a super positive sign. Other signs would be okay too, like dilating his pupils or jerking away from pain stimulus rather than pronating (which, for those who've been wondering, is "rolling" the arms and legs inward, rather than jerking upward away from the pain). But if anyone feels like praying for a miracle, I'm definitely voting for eye-opening. Or, heck, while we're at it, let's just pray that Dad wakes the heck up!!!!!! :)

*which, I've been informed, is different than Lasiks. ;)

still stable

Ed continued to keep his blood pressure and heart rate and hematocrit looking good today, so they took him off the ventilator and he's breathing on his own. They're just re-starting his feeding, so he's just on 10 ml per hour. His legs continue to be quite swollen, so prayers for him to reduce his fluid retention (as well as to wake up!) would be appreciated.

The surgeon is scheduled to be back in town tomorrow, so we may have more information about when Ed will likely move over to the Select Specialty LTAC.

Visitors are quite welcome, since we're back in the game of having stimulating conversations and delightful reading sessions around Ed. If you come to the ICU and Ed has been moved up to the LTAC, the ICU staff should be able to point you over to the "B elevators" that go up to Select Specialty (on 5th floor).

re-stabilizing

Hello from Denver, once again! Some good news for you all: Dad seems to have re-stabilized. His blood pressure is back up to 106/69. His heart rate is back down to 80ish, down from 110 last night. His hematocrit numbers are back up to 33 -- normal for Dad would be about 40, and last night it was around 20, so he's getting there. His temperature is at 100, down from 103 last night. So, he's nowhere near perfect and certainly not out of the woods yet, but definitely better. We'd like to ask for prayers that things continue in this trend toward stabilization & healing.

Dad's legs are quite swollen, which apparently is common for patients who've been on their back so long, but can't be comfortable. They've taken him off the anti-seizure drug, which is a little scary to us but they thought that might be causing the rash.

We'll be at the hospital most of tomorrow, but if Dad continues to appear stable then I think other visitors would be fine too. :)

back to Denver

Hi folks, I'm writing a quick post from the Portland airport; I'm on my way back to Denver (thank you Derek & Christy!!!). The CT scan yesterday revealed that Dad has a blood clot in his lungs, which is not great news. His rash has also gotten worse I understand. So, I'm headed back home to help the family rally Dad over this next little bump in his road to recovery. Please pray your hearts out for us!

mysterious bleeding?

Hi everyone. We had a bit of a scare today. Dad's red blood cell counts (hematocrit levels) were decreasing yesterday after the surgery to replace his bone flap. They gave him a unit of blood, which should have raised his levels but instead they continued to decrease, indicating that he was bleeding internally...somewhere. [They weren't decreasing at a scary rate, so don't jump to the same scary conclusions as I did. ;)]

It's apparently relatively common to have some bleeding in the stomach after insertion of a PEG tube. So, this afternoon they called in a gastroenterologist and they looked through the tube to see if they could see evidence of, or the source of, the bleed. The nurses had pulled up some "coffee ground" substances from Dad's latest residuals, when they were checking to see if he was properly digesting his food, and apparently that is a sign of blood mixing with the acid in the stomach. And the gastroenterologist did, indeed, see a small section of the stomach that might have been bleeding earlier, so they clipped (or clicked? or cauterized? someone medical help me out here!) that section, but it wasn't really large enough to have been causing the drop in red blood cell levels that they were seeing.

They ran a CT scan on Dad's torso, to see if they could locate another source of bleeding. As Dad's family, we apparently aren't allowed to know the exact results of that test, but if they had indeed found something worrisome they would have called up to the ICU doctors, which they didn't. We were reassured enough by that observation that Mom & Brian (who had spent most of the afternoon and evening in the hospital waiting for news), as well as Dawn & Jim, went on home for the night. They gave Dad another 4 units of blood and will check his red blood cell counts again in the morning.

So, at this point we don't really know what was causing the mysterious drop in hematocrit levels. We'll just hope that the levels just as mysteriously stabilize overnight.

In other news, Dad is also running a bit of a temperature, and they're a little worried that he might have a blood clot in his other leg. He also has a rash that started out on his back, and has now spread to his chest and arms. But, he came through the surgery to replace his brain flap with flying colors, so the weird "dent" in his forehead is gone yay. :) Please, please, please continue to send healing prayers/vibes/thoughts for my dad, knowledge and wisdom for his doctors & nurses, and patience for all of us, his friends and family. Thank you everyone.

--Kristy

LTAC

About a week ago, the social worker on Dad's case came to talk to me about moving Dad to a different wing of the hospital, for long term acute care (LTAC). I was pretty unhappy with the idea, mostly because I still have a hard time wrapping my mind around the whole idea of how long Dad's healing might actually take. Mom was equally unhappy about it, but Dawn managed to talk some sense into us. (Thank God for Dawn!!!)

An LTAC is not, as we'd feared, a place where they just "park" patients who are unlikely to recover their facilities enough to live a relatively independent life. It is, however, a place that can provide Dad with rehab exercises a couple times a day, even before he's regained consciousness. It's also well-equipped to handle patients who've had tracheotomies, are on a ventilator (which Dad's not anymore!), have a brain drain (which Dad doesn't anymore!), etc.

So, after we got over our initial negative reactions, Mom did a fabulous job of calling around and asking about the different LTACs in the area to see which ones different people recommended. Amazingly -- seriously people, this was totally God at work, as far as we're concerned -- every single person that Mom talked to recommended Select Specialty, the LTAC associated with Presbyterian/St. Luke's hospital. The neurosurgeon, the case worker, Mom's friend from church, and Dawn's pharmacist friends -- everyone. It would also be much more convenient to keep Dad within the same hospital buildings, and should they need to transfer Dad back to the ICU if anything worrisome happened, then they just wheel him on down the hallways rather than trying to transport him via ambulance anywhere. And, everyone in the ICU is already familiar with Dad's case.

Mom & Dawn set up an appointment to see the folks at Select Specialty this afternoon, and both of them were positively glowing when they talked to me about it afterward. They both said that everyone there seemed super positive, great attitudes, always saying "when Ed wakes up," never "if." We are all just so, so, so, soooooooo glad that everything worked out. No difficult decisions, no conflicting advice, all the arrows pointing in the same direction. Thank God.

They may decide to move Dad into the LTAC as early as Monday or Tuesday, if he gets his brain flap surgery tomorrow morning. Otherwise it'll have to wait until next Friday-ish. I'll keep you all informed!

--Kristy

stimulation visits

Well everyone, my mom achieved a minor miracle today -- she actually managed to speak with the neurosurgeon!! (He's been incredibly difficult to get ahold of over the past week.) They talked over a few things, but most importantly, he confirmed that the more stimulation Dad can get, the better!

So, we would like to ask a huge favor of anyone living in the area...please come visit! Dad is still at Presbyterian/St. Luke's in downtown-ish Denver, in the ICU. He has incredibly open visiting hours -- the ICU is only closed to visitors from 7-8 am and pm. Just walk on in to the ICU (the door in is at the very back of the ICU waiting room, sort of hidden behind a post), and if it's your first time, ask any of the nurses for Ed Hollingshead's room. He's in room 11 at the moment, if you're shy about asking. :)

A few things to note:

• Please keep a positive attitude! We want to surround Dad with positive thoughts and feelings. I know it can be a little difficult at times, but give it a shot. :)
  
• Dad is in a coma, so he won't be responding to you verbally. Look for his shoulders or his eyelids to twitch in response to your voice.
• We're looking for auditory stimulation here, since we've heard of people who recalled things that they'd heard while in the coma. Providing this kind of stimulation to a comatose friend can be a little challenging! If you can, I highly recommend bringing someone with you when you go to visit -- that way the two of you can banter back and forth, and include Dad in the conversation. If you're visiting by yourself, I recommend bringing a book and reading aloud from it. Dawn & Brian & I have been reading _The Shack_. We also enjoyed listening to Brian read from a book of jokes. And of course, Brian & Dawn & Jim have been reading from the Bible, too.
  
• The doctor plans to put Dad's brain flap back in sometime next week (yay!). Until then, though, Dad's head does look a little weird, sort of caved in on the left side of his forehead. It's actually a good sign, and tells us that the brain swelling has gone down...but it's a little startling at first, so I thought I should warn you all.

Mom, Dawn, & Brian tend to visit somewhere between 5:30 and 9 pm or so. You're welcome to join them, or just visit Dad at any other time that might be convenient for you. Thank you so much!!!!

--Kristy

drain out, turban off, PEG in

Hi folks, so sorry for the lack of updates over the weekend...Mom kept me hoppin' putting away the Christmas decorations! She could give Mrs Claus a run for her money, I tell ya.

So, just the basics: Dad kept his ICP (brain pressure) steady all weekend long -- they didn't open his brain drain even once -- so on Monday morning they took the drain out! That means he doesn't have to have a shunt put in, which we are soooooo relieved about. It also means they could take his head bandage off, so we could finally see him without his "turban"...my dad is going to have some seriously awesome scars. ;)

They also took Dad off of the ventilator on Sunday morning yay! They now just have what amounts to an oxygen mask on his trach. That's so awesome! His hiccups have also totally disappeared! :)

Since they didn't need to put in a shunt, the doctors went ahead and put in the PEG feeding tube (which goes directly into his stomach) this morning, and removed the feeding tube that was going up his nose down his throat to his stomach. So now everyone can see his whole face unencumbered, yay how nice!

Those are the major updates. Dad's also made some nice baby-step improvements over the past few days. On Saturday, Brian was telling some Chuck Norris jokes, and we all noticed that on the particularly funny ones (ok, the ones *I* thought were funny...), Dad seemed to flinch both of his arms&shoulders when we were all laughing aloud. He also started to move his head a fair amount, and reacts pretty strongly when Mom runs her finger down the right side of his face (none of the rest of us can get that reaction from him, isn't that odd?). We also noticed that he would close his eyelids on his own -- after the nurses check for pupil dilation, they used to have to firmly close his eyelids, but now he does it! He has also started "fluttering" his eyelids occasionally, which makes him look like he's dreaming. :)

I flew home to Portland last night, but I'll be continuing the blog based on updates from Mom & Dawn. :)

tracheotomy

Dad had his tracheotomy this morning at 9am, as scheduled. So now all the tubes that were protruding from his mouth are now protruding from his neck instead. He's made some swallowing motions, which is good, and hopefully is now more comfortable without that nasty tube going down his throat! He's still running a low-grade fever, which we hope will continue to decrease as his body adjusts to the clot in his leg. His pupils are still not dilating, and he's still pronating in response to pain stimulus. :( We're continuing to hold onto our hope that he will make some positive steps in the next week-and-a-half toward recovery...

left leg clot

Ultrasound confirmed this morning that Dad has a blood clot (a DVT) in his left leg, apparently up in the thigh area. This evening the doctors inserted a filter to prevent the clot from reaching his heart or lungs, should it come loose from its current location. It was actually a pretty simple procedure to insert the filter, so they were able to do that before doing the tracheotomy, which is scheduled for 9am tomorrow morning.

Not much else new. Dad continues to be twitchy, more on the right side of his body than left, which we think is weird, since the right side of his body ought to have been paralyzed by the stroke. He is still responding to pain stimulus, less strongly than last Sunday but more strongly than Monday/Tuesday. He remains comatose despite our best efforts to convince him to come on back to us. We'll just continue the efforts. ;) Thank you all so much for your continuing prayers.

upcoming changes

Late update tonight, my apologies. Mom & I talked to the neurosurgeon late this evening, who worked with us on a plan for the next few days. [Some of this may be overly detailed for ya'll -- the gist of it is: tracheotomy tomorrow or Friday; remove the brain drain (there must be a more technical name than "brain drain," someone help me out with that one, please!) and see if Dad will need a shunt into his stomach; if no shunt, place a PEG tube (a feeding tube directly into Dad's stomach) early next week.]

1. Tomorrow morning-ish, they are likely to give Dad a tracheotomy. It's a bedside procedure that should take about 30 minutes. I find the idea of a trach pretty freaky, but a lot of people have said very positive things about it, including the doctor, Dawn, and other medical personnel-types. The benefit of a trach is that Dad won't have a ventilator tube down his throat, which is generally painful and annoying -- Dad is still coughing pretty strongly even in his comatose state, especially when they bump the ventilator stuff at all, so it does make sense that the tube is bothering him. Maybe he'll show some amazing progress after the trach! Wouldn't that be fantastic!!
   
2. Dad's ICP numbers (indicating brain pressure) are stabilizing -- they are able to leave the drain closed for 2+ hours at a time now. So the doctor may be taking the drain out in the next few days. Then (I think?) they'll do a CT scan to see if Dad has developed hydrocephalus which will require a (permanent) shunt from his brain into his stomach.
3. If Dad doesn't need a shunt, they'll place a PEG tube either this weekend or early next week. The reasoning for this operation is that the feeding tube is another source of irritation to the throat...and also another possible source of infection, which has got us all running scared right now.
4. They might perform an ultrasound on his legs to see if he's developed any blood clots, which might explain his current fever. [Which, actually, would then make him & Mom a matched pair, haha.] If they find a clot they'll do some other complicated stuff to make sure the clot doesn't get into the heart or the lungs.
5. The fever might also be being caused by the anti-convulsant drug that he's on right now (Delantin?). So if they can't find any other source of the fever then they'll switch him to a different anti-convulsant drug.
   

Whew! It was actually quite a long conversation with the doctor, and we feel so blessed that he was the neurosurgeon on Dad's case -- he's always happy to stay & talk with us, and to make sure that we understand everything that's going on (to the best of our abilities!).

Okay, other updates...

Dad's hiccups seems to have disappeared! Yay! That's so awesome, you guys, you have no idea. Thank you thank you. He spent the entire day breathing on his own, without any ventilator assistance (which is what makes them think it would be okay to do a trach soon). He breathes at a fairly low rate of 8 breaths/minute now, but at the same time takes very deep breaths, which Mom says is actually normal for him. He is displaying a bit of apnea, which he was doing even before the aneurysm, and he doesn't do it too often, so that seems to be okay.

Dad's fever is up around 102 again. :( They've sent off culture samples but don't seem to have received anything definitive back from that. Since the brain swelling is behaving fairly nicely now, that shouldn't be the cause of the fever, so it's a little bit of a mystery. Please send prayers that they figure it out, and that whatever is the source of the fever doesn't cause my dad to lose any ground in his road to recovery.

Dad is responding less strongly to the pain stimuli. :( We really have no idea why that might be the case (though it does seem to differ depending on which doctor/nurse is giving the stimulus), but it's not really a good sign. We thought that maaaaaaaaybe the fever + hiccups were wearing him down?, but we're not too sure whether that's a plausible explanation or not. However, our hope is a little fragile right now so please don't pop our bubble until later. ;)

Other than that, he's holding pretty steady in his comatose state. We'll continue to hold onto our hope that Dad will begin to show stronger signs of recovering soon. The doctor has counseled us to be somewhat patient over the next 2 weeks...and the good Lord knows that patience is not our strong suit, so please please pray for strength for our family during the next few days and then weeks.

God bless you all.

--Kristy

sneezy

Just a quick note to say that when they were messing with the ventilator today, Dad made this crazy "I'm-going-to-sneeze" face -- scrunched up his eyes, dropped his jaw, etc. And his left eyelid flickered after he closed his mouth again. I was soooo excited after seeing this, because it was the most facial movement I've seen since last week. I immediately checked the hallways, then opened Dad's eyelids hoping that he would somehow, miraculously, focus on me, or dilate his pupils... But no such luck. However, when Dawn, Brian, & I observed a repeat performance of the sneezy face later on, the nurse did say that it was new, and anything new was good...

hiccups

Okay just a tiny, micro update before we head off to the hospital -- Dawn & Mom reported last night that Dad appears to be having some hiccups, which interfere with the ventilator, which stresses him out and pops his ICP (brain pressure) numbers up a good five points or so. Dad's pretty well-known for having really strong hiccups, so we'd like to pray that for the next little while, at least, those hiccups just go away. Thanks everyone, more later!

--Kristy

squeezy

On her way home from the hospital, Dawn said that Dad squeezed her hand with his right hand! Hard for any of us to say whether it was intentional or random, but still exciting.

regulated pressures

By a random fluke (or God's hand!), I happened to call the ICU today while Dad's doctor was there, so I have a quick update from my phone conversation with him.

Two small pieces of (relatively) good news: Dad has been off of any kind of blood pressure meds since 2:30pm yesterday! That's definitely a first, so that's one, tiny, positive step. Secondly, the brain drain is still being left open, but the doctor said he closed it for 5 minutes or so, and the pressure stayed pretty low, at an ICP of 12. That's definitely new, too -- the last time they closed the drain his ICP shot up to 25, way above the max they've set for him of 18. So, yay! Hopefully hopefully hopefully *crosses fingers* that means the swelling in the brain is going down. And, even more importantly, hopefully his brain stem and the right hemisphere of his brain will recover from the pressure they've been under. (Oh, the pressure! ;))

Dad is still strongly pronating in response to stimuli. Again, we'd really like for him to move to more purposeful movements. Or moan. Or open his eyes. Or dilate his pupils. *sigh* Prayers are, as usual, appreciated. And maybe some prayers that both we and his doctors and nurses are appropriately patient as we wait to see how Dad will recover from his stroke. Yesterday we started telling Dad that a week of sleep was really quite enough, so we'd like for him to start coming back to us now. :)

On a related note, towards the end of the week we will have to start making some decisions about whether or not to do a tracheotomy for the ventilator, and whether or not to put a feeding tube directly into his stomach. I suspect that these might be difficult decisions for us to come to as a family, so prayers would also be appreciated for that.

That's it for now, hopefully I'll have some more information after the rest of the family sees him.

--Kristy

winter wonderland

We woke up this morning to a world covered in several inches of snow! One of the neighborhood guys snowblowed our driveway, and since I suspect most of the neighborhood is reading the blog by this point, I thought I'd just say our thanks here: THANK YOU SO MUCH, AND BLESS YOU!!!

Mom will head on down to the hospital later this afternoon, while I stay home & continue to recover from my silly virus. :( I think Dawn, Brian, and Jim are planning to visit Dad later in the evening as well, so I'll have a secondhand-update tonight. :) Haven't heard from the hospital this morning, and as usual, no news is good news. Later!

--Kristy

maybe moving more

Some quick updates on this howlingly windy Sunday evening.

Firstly: Dad's status remains much the same. They put him on an intermittent ventilator, which we hope is not a step backwards -- the doctor seemed to indicate that they were doing that just to give my dad a rest from the hard work of breathing through the ventilator tube, so hopefully it's okay. The doctor talked about maybe doing a trach midweek, depending on Dad's progress...and I would just really love it if he was making enough forward progress to just come off the ventilator entirely by next weekend-ish. It seems to me that Dad is moving a little bit more -- raising his left shoulder, and maybe rolling his head side to side a bit -- and not just in response to pain stimuli (though he does react strongest to that), but also in response to our voices, or someone laying a chilly hand on his arm (Mom & I are famous for that!), or sometimes just randomly. These types of responses are apparently a good sign, says Dawn & her pharmacist friend. However, it's still pronation rather than the more purposeful movements we'd love to see. His pupils still aren't dilating. His fever is up a little. He goes back and forth with being able to digest his eggnog. I'm not sure whether it has been apparent from my previous posts, but my dad is comatose right now. So if you come visit P/SL -- and the ICU has open visiting hours all day and night with the exceptions of 7-8 am and pm -- he won't be able to respond...but I think we will still appreciate the company.

Secondly: Mom & I went to the 9:30 service at Columbine United Church this morning, and the praise and worship was such a joy to me. We sang three of my very favorite hymns -- "I Love You Lord," "Shout to the Lord," and "Down in the River to Pray." I just felt so so so blessed that I was able to be at church on that day and sing those songs. Mom & I each lit a prayer candle for Dad. Everyone at the church was just so warm and wonderful, and great about hugging my mom so she would know how supported she and Dad are...it was just such a blessing. Thank you so much, to all of the wonderful souls at Columbine United.

Thirdly: I appear to have caught a little stomach virus. :( Which is why this update is so late & so short. My brother-in-law's father says that it sounds just like a bug that's been going around at his work, and that I ought to be better by tomorrow morning. That would be great. But I would really appreciate some prayers that I didn't, God forbid, give the virus to my dad. :(

And finally: Thank you everyone for all of your comments on the blog! They are such a source of encouragement to us. God bless you everyone! ;)

--Kristy

keep breathing, keep moving

Apologies for the slow-down in updates, folks. We don't have a whole lot of news, but at this point, no news is good news! We just want Dad to keep taking forward steps -- even if they're baby steps! -- and *no* steps backward.

Yesterday, one of the nurses casually mentioned that Dad has been breathing on his own. We didn't really realize how exciting that is, until the doctor came in around 4 and was super happy to hear that Dad had been breathing on his own since 5 am, with no interruption. Dad is still on the ventilator, which is mostly there in case of emergency -- if he stops breathing for longer than 20 seconds, the ventilator will kick in and help him out. We were really happy that as of 9 pm last night that hadn't happened ... but apparently the ventilator had to kick in twice this morning. :( His breathing rate has decreased, though the nurses says he's taking deeper breaths to compensate, and I noticed that his breathing is much less regular than it was yesterday. Please please send prayers that he will continue to breathe on his own, and that he will go back to regulating it better.

Dad is continuing to respond to pain stimuli, but the night nurse pointed out that he is pronating, which is not actually an "appropriate" response to the stimuli. So, we like seeing the movement, it makes us happy and makes us feel like there is more of Dad in there than before ... but an increased appropriateness of the responses would be fantastic. We also would just love love love love to see him dilate his pupils, which is an indication of upper brain function. Brain stem function is all good and well, and obviously necessary, but it's the upper brain that makes my dad my dad, so we would really really really love to see signs of neural health up there too.

As usual, we continue to pray that the brain swelling will go down with no neural deficit. They are still leaving the brain drain open, and we would just love it if they could go back to keeping it mostly-closed. Thank you so much for your continuing prayers on that front as well.

We're settling into a pretty stable state, assuming that the breathing re-regulates, so we're beginning to think about visitors again. Thank you so much, everyone, for all of your patience as we regain our footing with this radical change to our lives. We were thinking that Monday might be a good day to start visitation again...I'll let you know if that changes.

God be with you!

--Kristy

fever down!

Dad's temperature is down to normal this morning! All the way down to 97. Wow. Thank you all for your prayers! God is so good. Dad also had a big bowel movement this morning (TMI again, sorry!), which was good news. Hopefully that, plus the extra liters of water that they're feeding him, will help him to digest that eggnog of his.

The brain swelling is still quite serious. They haven't been able to close the brain drain for more than about a minute still. We had really hoped that today would be the end of the swelling; we'll have to wait & see what the doctor says about it. Please please please continue prayers that the swelling will decrease with no neural deficit!!!

Thanks so much, God bless you all.

visiting hours

Many of you have expressed a desire to come visit Dad in the hospital. I just wanted to write a quick note to say thank you all for your care & concern. I think we'd like to hold off on visitors for just a few more days, until we're a little more certain of Dad's road to recovery. If you happen to be in the area, feel free to stop by the ICU waiting room, let the nurses know you're there, and either Dawn or I will come out to chat with you for a bit. Thanks sooooooooooo much for your patience and understanding, we feel so loved and comforted by your concern. We'll definitely let you know when we're ready for visitors -- you all know my dad is a social butterfly so he'll love to see you when he's ready. Thank you.

--Kristy

he flinched!

Well, Dawn has lots of updates from her evening of talking with the night nurse and reading to Dad from _The Shack_ (which I highly recommend!)...but I'll write what I can remember from my phone conversation with her, and she can add on whatever I forget.

The most exciting news was that they were able to elicit several pain responses from my dad! (That's very weird to write, actually. I'm excited that people are putting my dad in pain...????) Anyway, they "tickled" his feet and both legs jerked up at the knee. I'd actually seen that response on the right leg earlier in the day but wasn't quite sure whether to believe my eyes. They also elicited responses from both arms by pushing on his nailbeds -- the right arm rolled away, and the left arm rolled away a bit more strongly. And finally, the lower lids of his eyes flinched when they pressed a piece of gauze up against the eyeball. I personally am most excited about the eyelid response, because one of our previous nurses said that was the most basic pain-response and was worried that he couldn't get Dad to respond to that on Tuesday or Wednesday.

Now, I should put in a little caveat -- the nurses all say not to have false hope with these responses, because they are no indication of whether or not he'll have upper-brain functionality, and of course that's the part of my dad that really makes him him. Our response has been solid: our hope & faith rests in the Lord, not on these scientific tests...but it sure is nice to see some positive neural responses. In fact, Mom pointed out tonight that these are actually the first positive signs of neural activity that we've seen since the stroke on Monday. Praise be to the highest heavens!!!

We're certainly nowhere near being out of the woods yet. We're a bit concerned that Dad's been running a fever since Tuesday. It was sitting at about 100, which they weren't worried too much about, but last night and tonight it bumped up to 102. The fever isn't really reacting to the Tylenol that they're giving him, though they were able to bring his temperature down by placing ice packs in his armpits. There are no signs of infection -- they've sent off the cultures and nothing came back -- and so they think the fever is probably a symptom of the brain swelling. Prayers for a reduced fever would be much appreciated. And, of course & as usual, prayers for reduced brain swelling!!!

One item that has been an almost-constant concern is Dad's high blood pressure. He bumped up over 210 (the max that they've set for him) pretty often today, and they've started him on blood pressure medications. Some of the meds have been less effective than others, so prayers that they find the right combination for him. They kept him on sedatives for so long partly because the sedation meds were keeping his blood pressure lower, but the sedatives may have been part of why they couldn't get any pain responses from him, so we definitely want to keep him off of those. It's a delicate balance with the blood pressure -- it needs to be high enough to profuse the brain but not too high...sigh.

They kept Dad's feeding levels down at 20 ml/hr today (I swear the food-stuff looks just like eggnog, which Dad loves, so we've taken to saying "Yum yum Dad, here comes some more eggnog!"). Sedatives may have had a negative effect on his digestive abilities, too. We're pretty much stuck in a wait-and-see pattern there -- the night nurse was trying to get him to poop tonight (ha, TMI anyone? sorry), and see if that helps the rest of the digestion move along.

Today was actually a very quiet and peaceful day. Mom, Dawn, and I sat around Dad's room, chatted a bit, read a bit, laid hands on Dad a bit. I'll have a verrrrrry interesting post soon about what we learned & observed today after Pastor Steve taught us about chakras. Stay tuned, and thank you again for all of your prayers!!

unsedated, undigestive, unresponsive

Big update this morning.

First, Dad is off of his sedation meds. That's a first (with the exception of two short hours on Tuesday), and I think it's a good thing. He's not overbreathing his ventilator and his blood pressure is staying under 210 which is the goal, though it is running a little high and tends to hover between 195-205. These were the two things they were worried about in taking Dad off of sedation, so praise be for that.

Second, they started feeding Dad on Tuesday night and had him up to 60 ml/hr, which was pretty close to what we think the goal was of 68 ml/hr. However, this morning they drew out a lot of residuals from his stomach -- about a cup, which means he's not digesting as well as he was. They gave him Reglan to help the stomach empty (thanks Russell for the correction!), then started him back on the feeding at 20 ml/hr. So prayers that he goes back to digesting his yummy sugar-and-fat concoction would be appreciated!, and then they can start feeding him protein which would be great.

Finally, Dad's been pretty unresponsive to pain stimulus -- this is where the doctor and nurse poke at him (pretty hard) to try and elicit the automatic pain response. The lack of response is (probably) because the brain stem is being squashed by the swelling of the left hemisphere of the brain. We probably won't be able to get better responses until the brain swelling goes down, and even then we don't know how well the brain stem will recover from being torqued so much. Continued prayers for a decrease in brain swelling, as well as full recovery of the brain stem's functions, the right hemisphere (which is also being pushed to the side by the left hemisphere), and the midline connection between the upper brain and the brain stem, are at the top of our prayer requests today.

We're holding in there. Dad looks better today, at least to our untrained eyes. We have some hope that today will be the end of the swelling; the doctor has said that it should start going back down tomorrow. We just have to make it to Friday.

Thank you all, and blessings upon you & yours.

--Kristy

heart in sinus

Dad's heart went back into sinus rhythm this evening around 4:00! That basically means that his heart is back into the rhythm that it's supposed to be in, which is great news! since his heart has been in atrial flutter basically since the whole ordeal started. So praise for that!

We're still very concerned about his brain swelling, and how that's affecting his brain stem, and the midline in his brain. Please continue prayer that the swelling will miraculously begin to go down with no neural deficit.

pupil dilation

Dawn finishes her summary through Tuesday's events...

Tuesday morning Dad was putting out a large amount of fluid from his kidneys. It appeared his body was not able to regulate his fluid balance. They were/are concerned that his left brain was swelling onto his brain stem instead of out of the skull area they had made. During the day his urine output decreased (praise God!). They were also able to start giving my dad tube-feeding through a tube in his nose that goes down to his stomach. When Brian and I left late in the evening he actually put out a large amount of urine which we were concerned about, but the nurse reassured us it was okay. Also, now both his pupils are equal but nonreactive to light. No one has told us what this is related to, but we are staying positive.

So, it has been a very rough week for us. We are remaining positive though. Most of this process has been a God thing -- first of all that we even found the aneurysm before it ruptured and it was safely clipped and did not rupture during the surgery. Brian and I were actually supposed to be in Venezuela on a mission trip this week and would not have been able to be here. Additionally, Kristy was able to fly out on Monday evening to be with us and help my mom.

Please, please keep us in your prayers and thoughts. My dad is very, very special to us, we love him a great deal, and we believe he has a lot of living still to do. It is not his time yet!! We really appreciate your prayers. We are also very thankful for all the prayer chains my dad has been put on - it has really been a blessing!!

Hopefully Kristy will be able to keep this website going with updates -- otherwise we tend to get overwhelmed by loved ones wanting updates. As we have been overwhelmed by telephone calls it might be best to shoot us an email or a card for now -- otherwise we may not get back to you right away if you leave a voice message.

Please keep us in your thoughts. I'm so blessed by the number of people praying for my dad, and the number of visitors that he gets on a daily basis. I'm reminded of the final scene in It's A Wonderful Life - my dad is so blessed and truly has a wonderful life.

Email either Dawn or Kristy if you'd like, it may take us some time to get back to you though.

complications

Dawn continues with the events on Monday (Jan 5)...

On Monday morning Dad became much less responsive. A chest x-ray showed pneumonia (most likely aspiration as he wasn't protecting his airway very well and was coughing stuff up but not swallowing it down). Also his brain was swelling and a CT scan indicated he had a new stroke :( secondary to a vasospasm along the artery where his aneurysm had been clipped. They took him back to the OR, removed the original skull fragment as well as removing more of his skull to help the brain decompress. The brain did not bulge out of the skull when it was opened up, which was a good sign. When they brought him back from the OR, his brain pressure was still up, and his right pupil was larger than his left. They took him back for another CT scan -- they were worried his initial stroke from the morning, which was the result of lack of oxygen, could have turned into a bleeding stroke. The CT looked okay -- the pupil being larger appeared to be related to his brain filling in where the aneurysm had been and irritating the nerve in that area.

from the beginning

Here's Dawn's account of the first few days of this entire ordeal.

On New Year's Day, Dad got a pretty bad headache which persisted throughout the day. He usually doesn't get headaches, so he called me (Dawn) and asked my opinion about him possibly going to urgent care. I encouraged him to go and get it checked out - even if it wasn't anything they could tell him what to watch for, etc. At urgent care, the doctor said it would most likely be a less than 10 percent chance that the headache was anything significant, but she could authorize a CT scan. Mom hustled Dad into the car and they went off to get the CT scan at Lutheran. The initial CT scan showed either an aneurysm or a tumor. He then went to the ER and got checked in so they could do further tests. An MRA (an MRI of the arteries) indicated it was a large aneurysm. He was admitted and planned to have an angiogram on Friday, then possible surgery after that. On Friday it turns out no one could do the angiogram at Lutheran, so he was transferred to Presbyterian/St. Luke's Hospital. They got him in to the angiogram right away, and after the neurosurgeon looked at it they took him straight to surgery.

Dad was in surgery for ~6 hours -- they took off a section of his skull and went in and clamped the blood supply to the aneurysm with titanium clips. The neurosurgeon said it was a very complicated aneurysm, and the anesthesiologist said it was the nastiest one he had ever seen. Dad remained on the ventilator overnight, but was able to be extubated on Saturday. He was talking to us on Saturday and Sunday - he wasn't opening his eyes yet and was having problems swallowing - in addition to right-sided paralysis as a small artery off the back of the aneurysm might have been clipped when the aneurysm was clipped. My dad is left-handed and therefore right-brained (thank God!!), while the surgery and aneurysm was in his left brain on the carotid artery behind his left eye. So he was talking (though he was mostly asleep) and grasping our hands and asking how we were and how he was doing. Unfortunately, Sunday evening he started having a difficult time breathing.

hello & welcome

Hi folks. We decided to set up this blog to provide online updates on my dad's status during his recovery from brain surgery. I'll be writing most of the entries, and I'm Kristy, Ed's oldest daughter. Please feel free to comment on any of the entries -- you can use the 'anonymous' option but please sign your name so we know who you are.

I'll be accessing the blog from the hospital or while we're on the road, so we should be able to get updates out fairly quickly, even multiple times a day. Likewise we'll get your comments as soon as you post them. We'd like to keep the number of phone calls to a minimum, as it sort of overwhelms my mom, so hopefully this site will prove to be a good communication medium.

Please pray for my dad (or send him good healing vibes, as your faith enables). Thank you so much, we are so blessed to have all of you as friends.