Berends Blog

Therapy & update

2007-11-12T13:32:00.000-05:00

Hi, I just thought I would give an update. I'm doing great, I feel good and like to get out as much as I can. I have therapy on tue.,thur,& fri. for two hrs. each. I'm walking without a cane on stable ground which feels good, I get tired real easy, but that is getting better. If you would like to visit you might want to call because I might be gone out somewhere. I would like to thank all of you that prayed for Bea & me in this time. . Some of you asked about our grand daughter, She is doing well. She has turned 16 years old and got her drivers license. Thank you for your prayers for her too. We feel very blessed to have such a caring group of family and friends. Bill

For those of you who know our daughter Cheryl--We'd appreciate your prayers for her and her family. Ben (son who has Down Syndrome) has returned to the Allegan County Learning Center, as of today. This was a difficult decision for Cheryl and Randy as it means Ben will spend a long time on the bus each day. Things were not going well for him in the Wayland Middle School program, so we hope this will be a good fit and make for a happier Boy. Thank You much!

Bill Berends

Dad is in the News

2007-11-02T14:14:00.000-04:00

Dad will be in the Penasee Globe the week of November 12. Look for him!

Full text says: Look At Me Now . . . Bill Berends is now home after receiving therapy. This is what he had to say ... "When I came to the Laurels of Sandy Creek it was after being in the hospital for 12 weeks. I came in flat on my back; and now just 2 1/2 weeks later, I'm walking with just the aid of a cane. The therapists know their stuff and how to motivate you. While here, I didn't find anyone I didn't like!"

DAD IS HOME

2007-10-29T09:33:00.000-04:00

Just a quick note to let everyone know that dad is now home! He and mom are doing well and have a new lease on life. Dad will be having physical therapy and has a ways to go - but loving life.

To get ahold of mom and dad call 616-877-4477
or to visit or send a card: 1115 146th Ave, Wayland, MI 49348

Dad would love a visit or a phone call. Have a blessed week and once again - thanks for all the prayers!

From Mom & Dad

2007-10-11T11:37:00.000-04:00

This is a note from mom and dad:
Wow! Life is good! God is very good. Everyday seems to give us a new pleasant improvement. Bill is now using a walker part-time (instead of always using a wheelchair). Physical Therapy is very strenuous and exhausting but also rewarding as he accomplishes new things and gains stamina. Bill enjoys visitors but his immune system remains compromised so please don't visit if you don't feel well.
There is no definite PT schedule but Bill is usually finished by 2:00 pm. If he does happen to be in therapy - you may go in and chat while he works. If he's not in his room - the nurses will know where to find him.
He hopes to go home in the near future.
We again must thank you all for your love & concern & especially your prayers. We believe that Bill's wonderful improvement is a direct miraculous answer to all your prayers.
God Bless You All!
Bill & Bea

Dad's In Wayland

2007-10-03T19:41:00.000-04:00

Yesterday Dad took a ride to WAYLAND! He is settled in the Wayland Laurels of Sandy Creek Nursing Home. It is located next to the Wayland CRC. He is in room 324. I was able to show up yesterday just as he was getting settled. We got done with a staff meeting and I just hopped in the car and ran over - It Was Wonderful to have them so close.

Tonight Randy, the kids and I went over for a short visit after supper. Dad rolled himself down the hall in the wheelchair and we went outside for a very pleasant visit. Benji hasn't seen dad since this all began. Actually the night dad went into the hospital we were at their house for dinner. That is the last time BJ saw grandpa. He was just a little shy at first, looking at the wheelchair and then at dad. By the time we left - Ben got up and gave dad a big hug and stated "BYE BYE".

Some details since I haven't written in awhile (sorry). Dad had the trac taken out before leaving Plainwell. He is breathing totally on his own with no problems (once in awhile you hear a 'squeak' out of his trac hole which is expected to heal in time on its own). He is on a total general diet and is able to eat on his own (needs help cutting somethings like meat). He had lunch and dinner in the homes dinning room. He said the food isn't bad. Tonight: Hamburger, potato wedges, sherbet, etc. Today he had almost 3 hours of therapy. While in Plainwell he was able to do three laps on the parallel bars (walking while holding the bars). Today they weighed dad. He is 189lbs. That is a LOT of weight gone.

The nursing home is not a place that dad plans on being very long. Although he is very grateful to be there. Here is one of dad's secrets. He was telling me that while in the ambulance on the way to Wayland they passed the Shelbyville exit and he fell apart. Dad didn't know - nor none of us - if he would ever be well enough to be coming home. He only has 8 more miles to go!

Thanks for the love, prayers, support and encouragement. Dad says over and over that he knows he would not be doing as well as he is - if it weren't for the prayers everyone said on his behalf!

Monday Update

2007-09-24T18:38:00.000-04:00

Dad had a great day today. They had him sitting up for over a half hour this afternoon. He also had a 30 to 60 minutes of therapy and was pleased with how he did. By the way - mom says he is getting more therapy than he thinks, sometimes he forgets.
Just to some info for you - dad has lost 50 pounds in the last 5-6 weeks. He said that he is enjoying his food enough to begin working on rectifying that.

As for Kelsey - his granddaughter - I went to see her today. She is VERY sore. They did a new CAT scan this morning which showed an additional bleed. At first they were going to do surgery to relieve some pressure - but they waited. Right now (7pm) they are getting ready to bring her for another CAT scan to see if the bleed has continued or not. The Nero-surgeon is there and will read the scan right away. Then they will be making the decision whether to have surgery tonight or wait until morning. Pray for the surgeon and Kelsey's parent (Jim & Missy) as they make decisions.

Doing Great

2007-09-23T20:56:00.000-04:00

We got a chance to go to see dad today. It was great to see how good he is doing. Nate went with me. He hadn't seen dad in a few weeks. He was amazed at how well dad was doing. Totally talking and breathing on his own. He still has the trec - but hopefully for only a little longer. Dad is a little frustrated with the amount of physical therapy they are doing. He would like more of it - he wants to get out of there and go home. He is eating a total 'general' diet now. No restrictions. Mom has to help feed him. He is able to get a cup of water up to his mouth with the straw. Working on utensils - but not quit yet.

We do have big news in our family that we would love your prayers for. My niece, Kelsey (Missy's daughter), had a bike accident on the Kent Trails with her youth group yesterday. She has a fractured skull and a small brain bled. She at the Butterworth hospital. She is experiencing a LOT of pain and a huge headache. So far the CAT scan was the same today as yesterday which is good news. When she is able to swallow her meds she can go home. She will probably not be able to do any sports in the upcoming season. She also turns 16 in a few weeks. Not sure if that will affect her driving or not. It sounds as if she had a small seizure after she fell and was unconscious. Please keep her, her parents, and mom & dad in your prayers.

Blessings on your week!

Mom's Husband is Back

2007-09-18T20:07:00.000-04:00

Mom called on her way home from Pip tonight to let me know what dad had for supper. Way more than I thought he would.

1/2 grilled cheese (without the crust)
1/2 bowl of tomato soup
pudding cup
1/2 cup chopped peaches
& Ice Tea

He also swallowed his pills!!!!!!!!!!!! Yesterday he started to suction himself when needed and continued that today with ease. For the first time he listened to music on his new MP3 player that he got for his anniversary a few weeks ago. He also had his glasses on for a while.

Mom said to let everyone know that if you are interested in seeing dad - it should be okay - just keep the visits short. Visitors will have to wear a gown & gloves. Just a precaution to protect dad from viruses - he had a blood test come back such that they want to be sure he continues to heal not not go backwards.

Mom also wanted me to express her deepest gratitude for all the love and prayer support given to her and dad. She finally feels like she is getting her husband back. She said that if anyone would have told her a week ago that she would be feeding dad supper and that he would be suctioning himself - she wouldn't have believed it.

"I cried out to Him with my mouth; His praise was on my tongue. If I had cherished sin in my heart, the Lord would not have listened; but God has surely listened and heard my voice in prayer. Praise be to God, who has not rejected my prayer or withheld His love from me!" (Ps. 66:17-20)
PRAISE BE TO GOD!

Swallow Study - SUCCESS!!!

2007-09-18T15:24:00.000-04:00

Mom called just a bit ago to give us some REALLY good news. Dad had another swallow test this morning. He PASSED with flying colors. He was able to eat some applesauce and pudding. They had an xray done to be sure that the food went into the right areas. GOD IS SOOOO GOOD! - They pulled out his feeding tube and they are going to have mom give him some supper - might be broth but I think anything will taste good to dad.
He is very tired. They are planning putting him in a chair for supper. Praise God for his faithfulness!

He is doing AWESOME!

2007-09-15T16:34:00.000-04:00

So - just got back from seeing dad and I was amazed at the progress he has had since seeing him almost two weeks ago. He had the cap on his trac and was talking away. After about 20 - 30 minutes he was looking very tired but was not excited about me leaving because he thought it would be a long afternoon. I asked about visitors and he said he really didn't want a bunch of people coming around. So not sure what he wants - - I just know he can now tell us. It was amazing to hear his voice after so long. I also had an opportunity to hold dad's hand and it felt wonderful. It was warm and strong - not like arm wresting strong but like 'I love my daddy' strong.

Keep up the prayers! If you are interested in seeing dad - give mom a call and see if he is up to it or what his schedule looks like. Again, thanks for the love, prayers and the cards.

Good Day

2007-09-14T20:57:00.000-04:00

Mom said that dad had a good day today. He meet with several doctors and seems to understand what is going on. There were two therapists that had dad sitting on the edge of the bed for a little bit today. They got him situated so that he could sit on his own for just a minute - then the guy caught dad as he started to fall. Mom said the hospital is very small. Only 17 - 20 beds for long-term care. And the walk to the car is very short (especially compared to the mile walk she had at UofM). I'm going to try to make it over there tomorrow for just a little bit. I'll let you know how it goes. Since we are going to go in the afternoon, mom is going to try to go for a little in the morning.

Good night and blessings to each of you!

News from Pip Hospital

2007-09-14T10:16:00.000-04:00

Mom gave Pip a call this morning to see how dad is doing and how his night went. He is settling okay today - but last night he was having a hard time so they had to put him on the vent for the night. Today they took him off about 8:30am. He has a really nice male nurse today. Mom said he sounded nice and seems to understand what is going on with dad. Mom will not be going until early afternoon. She is home and enjoying that recliner that hasn't been used for a LONG time. That is one of the things she missed - there were never comfortable chairs where you could put your legs up.

Again, mom asked that people wait to visit. And then if you want to visit - giving mom a call at home would be good (616-877-4477). Then she can figure out if the timing will work or not. Last night my sister, Missy, and her kids stopped by. They only stayed about 10 minutes. Dad was exhausted. Thanks for honoring mom's request.

THERE ARE HERE!

2007-09-13T15:04:00.000-04:00

They made it safe. Mom just called (3:03) and apologized for not calling sooner. She has been signing papers and stuff. Dad is okay - but in a lot of pain. They can't (or won't) give dad any pain meds until the doctor sees him. The doctor is in the hospital but hasn't seen dad yet. The last pain meds he got was at 9:50am. Mom asked to pray for him until he is totally settled!

Sigh - - - God is truely good!

Please hold off on the visits until we can figure out how dad is doing and what his rehabilitation schedule will look like. Thanks!

THEY ARE ON THE WAY

2007-09-13T12:07:00.000-04:00

Just talked to mom. She said they left around 11:00am. She appoligized for not calling but she got turned around, mixed up and then lost. She had just asked for directions and was on her way. Pray for safe travels for mom and dad. As well as for dad to remain comfortable during the trip!

Additonal Post

2007-09-13T08:49:00.000-04:00

I was just on the phone with mom to see if she has heard any differently - and the hospital Fire Alarm was going off. I told her to grab dad and get out of there. Only she was still on the way up there. She got to the doors and they were locked (must be fire doors) and then she heard an announcement - but she wasn't sure what they said. Well as we were closing our conversation she said the doors were open and people were going through them. No one was coming back out so unless they dropped in a hole on the otherside of the doors - she was ready to head up and check on dad.
The Old Fart still has a sence of hummor.
HAD to share with you all - !!!!

Coming Home?!?!?!?!

2007-09-13T07:54:00.000-04:00

I answered the phone on Tuesday about 5:15 and it was mom. She was almost giddy - okay - I get giddy, she was very excited. She had just been called by the transfer nurse with the message that dad would be heading home (Pip Hospital) Wednesday morning. Mom said "Don't blog it - just in case." So I didn't.

Yesterday he was suppose to be transferred at 10am BUT the medication concoction they give dad wasn't done being made in the pharmacy at UofM so they delayed it until 1pm. About 11:30 mom talked to the nurse and made the decision to head to the motel so that she would be ready to go when dad went. While she was packing up she got a call from dad's nurse saying that Pip said dad couldn't come yet. My understanding is that he would arrive to late in the day for them to get him ---- I have no idea. Settled? In-patiented? (I know that's not a word) Whatever the reason they wanted to wait until this morning. Since the not telling everyone didn't work - I'm going to try with the - 'Tell Everyone You Know'. We'll see if that works better. 'Dad and mom are coming home TODAY!'

Of course, I am always looking for the good in things - not necessarily my nature - just an easier way of accepting life and all it throws at us. Dad was exhausted yesterday by noon and was experiencing a MAJOR headache. Mom said that the nurse and tech really cleaned dad up - even washing his hair (which isn't done all the time). So - we know that the trip will not be a limo ride over here and then the new facility and new people to get used to. So dad was able to get some rest as well as mom. She was telling me that she made 4 or 5 trips back and forth to the van, between getting dad's stuff out of the room and then heading over to the hotel, and then heading back to the hospital. Hopefully this morning she checks out of the motel and when she gets to the hospital she is ready to follow dad home. She still experiences uncomfort when she walks a lot or strains herself. I really think the two hour trip home could have been very hard for her.

Good night sleeps for all and then home TODAY!

Good News - the NEW MAILING ADDRESS should just be at HOME and mom can bring them in each day: Bill & Bea Berends; 1115 146th Ave; Wayland, MI 49348.

We will continue to blog - I hope to teach mom how to do it. So you can be hearing from her and eventually dad.

I'll post as soon as I hear! - HIP -- HIP -- HOORAY!!! GOD ROCKS!!! and so do mom and dad!!!

Swallow Study

2007-09-10T13:45:00.000-04:00

Just talked to mom a few minutes ago. She sounds tired. Spent the morning with the Social Security people at UofM (or the social worker about the social security??!), as well as she is in a new upper room at the motel - because of the weekend traffice for the Home football games. A little more walking - and the bed is VERY soft. She sleeps good at night but has a backache during the day.

In talking to the doctor they still want to have a positive Swallow Study done on dad. The study last week showed that half of his swallow (?) was weak. If they can get this study done and it looks good dad might move toward the end of the week (to Plainwell). It's like a Christmas present that never comes - they keep saying soon - after this or that! Keep praying for mom and dad to come home SOON.

By the way - if any of you continue to email dad & mom at home - we aren't able to get them at this time. I lost the password and mom has no idea how to get them. If you want to email a private post for mom you can use our home email: csmith203@charter.net

Blessings on your day!

Continue to Improve

2007-09-10T10:20:00.000-04:00

Dad continues to improve each day. Mom says the move to this side of the state is in view. This weekend dad was able to pull up both arms along his hips to get them to touch!!! The tube feedings seem to be going okay - and his body seems to be processing the food (liquid).

A buddy from dad's work send this picture to 'inspire' dad! Enjoy ~

Mom insisted that I let you all know that my dystonia is acting up and I'm having the side effects that come with that as well as severe headaches. When you are praying for dad - please lift up my family and self - thanks!

Have a good day.

Missing Posts

2007-09-06T22:04:00.000-04:00

I'm not totally sure what happened but I just realized that the last two posts never made it online. I'm SO sorry. I normally double check and I just didn't think to do it.

Well, hopefully you are reading this and it didn't disappear into cyber-space! Mom and dad continue to be very ENCOURAGED! He continues to gain strength every day. Today mom said he lifted his left hand OFF the bed on his own for the first time in over five weeks! He was also able to lift his right wrist by applying pressure to his hand and arm. These are HUMONGOUS gains (is that really a word?)! Tonight when mom was leaving dad also moved his head a few inches to pucker up and kiss her goodnight.

Dad is experiencing a lot of aches and pains. Mostly due to how hard he is attempting to use his tired muscles. He is also taking far less meds for anxiety & pain. He has been breathing on his own for most of the day each day this week. Continued prayers for his strength and endurance is much appreciated.

They haven't done the colonoscopy yet (a few weeks ago I didn't even know how to spell colonoscopy). The doctor today said that dad is doing so well they they might just wait for him to do that on this side of the state. Mom continues to hope and plan for dad to be transferred to Pip Hospital in Plainwell. The earliest would be the beginning of next week. We'll continue to hope and pray that comes quickly. Selfishly - Plainwell is only 20 minutes from our house!

Last Big news of the night - The PT and OT came to work with dad together today. For just a few minutes they had dad sitting up with his legs hanging off the edge of the bed. GOD IS SO GOOD!

Frustrating Afternoon

2007-08-31T22:02:00.000-04:00

I have talked to mom a few times today. It has been a frustrating day for both she and dad. Earlier in the day was the event at lunch time - then later it continued. Dad was very uncomfortable early in the afternoon. His abdomen was extended and having a very difficult time with his bowels. Mom discovered that even thought they had only moved a couple of hallways - she felt as though they had gone to a new hospital. They now have a whole new team of doctors - and support staff. Dads meds were cut WAY down. Limited pain and anxiety meds and tons less care.

Eventually mom asked to see the supervisor and had a sit down. The supervising nurse called in the doctor and they discussed moms concerns and things that needed to change. In addition to all the other changes - they also needed to reorder the 'sip in puff' nurse call that dad has been waiting on as well as the special boots (see the blog from last week). Because he is in a new area - it needs to be reordered. They also have changed his doses of meds. My uncle & aunt were there for a while today and my aunt (a nurse by trade) informed dad's nurse that he wears hearing aids and it was probable that he wasn't able to hear her. (Thanks Aunt Barb!) The PT thought that dad wasn't quite as strong as yesterday - but she could also tell that he was extremely tired today.

OOOOHHHHHHHHHHHH - - - Forgot to tell you all!!!!!!!! Dad was breathing on his own for TWO HOURS TODAY! He was a little overwhelmed and totally exhausted by the time he was done - but he did it! Mom said the last 15 minutes were probably more like 4 hours to him.

Dad has moved rooms - but mom didn't know the new room number. I'll get the number to you soon.

Tomorrow morning our family is going to Silver Lake for the weekend. I won't plan on blogging until we get back unless mom needs something put out there. So hopefully you won't hear from us for a few days. You are probably so sick of me and my rambling that you could use a few days off. Have a wonderful holiday weekend!

Lots of News

2007-08-31T13:06:00.000-04:00

K - to start off dad has definitely turned a corner for the better. We are seeing daily changes this week as well as the doctors & therapists. Very exciting. Do know as I tell you of these changes that they are slight. A squeeze is really a gentle grip. I don't want anyone to think that we are about done - I think we are looking at several months of recovery.

Okay - with that out of the way DAD IS DOING FANTASTIC!!!!!

Rachael and I started out the day taking some pictures of dad's kittens and printed them for him. Got a good smile out of him when he saw. They were tiny when he went into the hospital over four weeks ago. Also yesterday they did do the greenfield filter so they are now ready to do the colonoscopy (hopefully today). When Rach and I got there dad gave me a kiss and right away wanted me to hold his left hand. SQUEEZE - it was so cool! Then he wanted me to place my one hand under his upper arm and pull up his hand - I could feel his muscles twitching and could feel his hand and wrist also moving and helping. I had tears - and he was grinning ear to ear. Dad has always been a bit of a show-off! I just loved it. He was so proud! Then - for the frosting - he started wiggling his toes on the right foot. He was looking down there drawing my attention to it. Very cute.

Early afternoon dad got really frustrated trying to tell us something. Shortly after they gave him some meds for the nausea (from the chemo), more meds for pain, and then some for anxiety. Communication is very hard! It is so frustrating for dad as well as mom, nurses, techs, and doctors. He has a lot to say - but with no sound, just his lips moving, it is very hard to figure out what he wants or needs or just wants to say. He can become anxious when he gets really frustrated. - K, so he has all these meds in him and in comes the Respiratory therapist to have dad breath on his own for a while (they have been doing this a little each day this week). So dad was really concentrating to breath good breaths and in comes the PT (physical therapist) to do her work. She started out with the left hand and arm. She was EXTREMELY encouraging. Went on and on about how much strength dad had already gained. She could feel new muscles in his upper arm twitching as they did the movements together. All over she could feel small muscle improvements throughout her time. Rach and I were sitting off to the side - and I had tears just flowing down my cheeks! - It was just so wonderful to see him improving!!!

So now remember dad is breathing on his own AND doing PT. He breathed on his own for A HALF HOUR!!!! He started looking a little panicked and the PT asked if he needed to stop - he looked at her and you could tell he was thinking. She asked again - and I could see a tiny tear slip down his face - then I asked dad "Dad - are you wondering if you need to quit one and which one is the more important - PT or breathing?" He nodded his head. She said - "Mr Berends - you did a GREAT job. We can defiantly quit for today and I'll come back tomorrow. This is going to take time. I can tell you are doing the exercises and yes - lets quit for today!" Dad breathed a large sigh of relief. He is such a trooper.

Last night dad was kicked down a level of care. He was moved to another room in a less critical care area. There are still two patients to one nurse - but it means he is improving. He still needs to be suctioned to get the goop out of his lungs. No feeds yesterday. And he continues to have bowel problems. But we are doing much better.

Yesterday they had mom meet with the social worker and they are beginning to look at where in our area they can release dad to. They are looking at Pip Hospital in Plainwell. He could be able to go there as soon as next week!!

Today they had planned to do a swallow study, PT & OT will be coming, the colonoscopy (but it has now been delayed until this afternoon), and --- there was something else that escapes me now. I talked to mom a couple of minutes ago and she was a little upset. They had loaded dad with the goop you need to normally drink before the colonoscopy - but it goes in one of dads tubes - but it was not passing out the bottom end. They were going to take care of that and do a light bath so mom went out of the room to eat lunch and take a break. When she got back after an hour -they hadn't even been in to check on dad during that time - let alone help him relieve himself. I guess there was a patient that needed to be attended to - but mom is laying the guilt trip on herself. So dad was tense and very uncomfotable. Again the bowel muscles aren't working properly.

A couple of other details. They expect dad to be on the chemo for up to 6 months! The chemo also comes in pill form. That is why they want to do the swallow study. They expect dad to fail the study - they just want a gage to see how he might do. That is also in preparation for sending him elsewhere. At Pip Hospital it would be called Long Term Acute Care. There would be a respiratory therapist on-site to help continue to ween him. And of course they really want dad to begin in taking through his mouth.

It was a great day for Rach and I. I hope to load a couple of pictures. Enjoy.

PRAISE GOD!

2007-08-31T09:32:00.000-04:00

Dad has finally turned a corner. I'm at work and need to do a few things ASAP but check back around lunch. I'll try to get the information out there!

THANKS FOR THE PRAYERS!!

Wednesday Update

2007-08-29T23:19:00.000-04:00

Mom called and talked to Rachael. She was very excited and said that dad had a very good day. I didn't get a chance to find out what was so good - but Rachael said was was good to hear grandma excited.

Tomorrow early Rachael and I will be going to Ann Arbor for the day. Then we can give a first hand account of how dad is. I do know that the blood filter proceedure was postponed again. They hope to do it Thursday. They were waiting on a blood test that needed 40 hours to be sure there was no infection in it (still a follow up to the fever the other night).

Looking forward to connecting tomorrow. Have a good sleep.

Hospital Address - repeat

2007-08-28T21:18:00.001-04:00

UofM Hospital Medical ICU
Bill Berends Rm#6820
1500 E. Medical Center Drive
Ann Arbor, MI 48109

Evening Update

2007-08-28T19:28:00.000-04:00

Talked with mom this afternoon - dad had a good morning. Last night he had a fever during the night so they postponed the procedure to place the blood filter in him. They don't want to chance an infection right now. So tomorrow they will be drawing blood to see if there is an infection present. His fever was gone today - so hopefully they will be able to do the procedure tomorrow. This bumps back the colonoscopy till the following day. They tried doing a little feeding through the tube today - didn't go very well so they discontinued it.

Dad had a male nurse yesterday and today. Mom said that went well for dad. It can't be easy having young women taking care of you all the time. Today they also changed the pickline used for the chemo. It had come out a little or something. Mom said it can be uncomfortable when they put in the new pick so she was trying to distract dad. While doing so she was watching what was going on in the room and counted the tubes going into and out of dad. There were 11 bottle (bags) hanging going into dad. 10 were IVs and 1 was his feeding tube. Then there were 3 tubes coming out. 1 with stomache contents, and 1 for each of his toileting needs. She said she just had to chuckle - nothing else really to do.

Mom said thanks for the continued cards and notes. She is getting quite a stack. She reads them to dad and then hangs them up but dad has not been up to her reading the last few days. The chemo continues to make him very nauseous. Mom has read them and enjoys the notes and encouragement that comes through them! Thanks again for loving my folks so much!!!

Reality Check

2007-08-28T07:49:00.000-04:00

Again, I'm so sorry that I've been absent from blogging this past weekend. It came to my attention through a couple of family members and then friends that dad was doing really great and things were going well. - I had a couple of conversations with mom and had to have time to figure out how much info to provide and how to give a realistic view of what is actually going on. It is very difficult for me to do so - much harder than I expected. Dad is still doing about the same and continues to make small steps forward and sometimes small steps back. I don't want to concern or depress anyone - but I do think it is important to give a clear view where dad is at and what the immediate future looks like. First and foremost - I don't want to hurt dad by giving more information than he would want given - but I feel some information is important for all to know.

Dad continues in the Pulmonary ICU at the U of M Hospital. He is totally bed ridden and all that entails. The nurses give him daily baths, clean him, brush his teeth, wash his face and neck. They change his bedding, his gown, and any other physical needs he has. He is hooked up to a respirator through his trac and is unable to speak so he can't say 'go away I want some lone time', 'get out of my hair', or 'I really need a beer.' For the most part dad understands what is going on around him - but does at times get confused. Some of that confusion has to come because he is unable to ask questions to get his own clarification. He experiences a lot of aches and pains and some days prefers to be sedated so as to not have to deal with it. There are times when he asks mom for medication for pain - but when the nurse comes in he says no. They have staff that come in regularly to help move him on the bed to keep from having bed sores (over 4 weeks in bed now). When they bring dad out for Ultrasounds, CT Scans, X-rays, Surgery's - - - it takes a BUNCH of people to get him to and fro. There are several towers with meds on them that need to be brought, one person just needs to use the vent bag to keep dad breathing, then the people who actually push the bed - - - It is an entourage fit for a wedding party! Doctors, residents, specialists, nurses, technicians, therapists, etc. continue to stop through out the day to do what ever they do. The other day a doctor looked over every inch of dad to be sure there wasn't a tick (bug) or something basic they had missed. She even said with all the baths and stuff there shouldn't be - but she had to be sure. (I think things like that have to be humiliating for dad.) Dad can not: Lift his head (he can roll it from side to side), his arms, shoulders, legs, or feet. He can't twist or move just enough to get comfortable. Mom and the nurses try to make him comfortable - but sometimes within a few minutes it isn't just right and there is nothing he can do about it unless he wants to go through the process of trying again. Most all of you reading this know dad pretty well. He is definatly one to be in the background working or helping - not one to draw attention to himself or ask for help. Because he can't move - he is still unable to use the call button for help. Some people have been wondering why mom is staying there and why she doesn't come home for a few days to regroup. Mom doesn't even feel like that is an option for now. She leaves for the evening and night - but usually dad is sudated and sleeping when she leaves. During the day he can't use the call button if he needs help or is in pain. The chemo treatment he is on - it make him naucous - he had no way to tell someone unless they can see his face. Again - there are doctors, techs, nurses, therapists etc. coming in and out all day. Some have questions and others have information for the folks. In the last couple of days mom has signed a number of permission forms for some procedures they are going to be doing. She just needs to be there until dad can advocate for himself - which is going to be a while yet.

I know that is a lot of info to process and it is not a pretty as a picture I usually paint - I just need everyone to know that when we say dad is very sick - it is an understatement. When I say I'm proud of mom and she is doing an unbelievable job - I really mean it! And when we ask for prayers - they really need it and really feel it or they wouldn't be as strong right now as they are.

Today there are a few things going on. They are going to be putting a filter on a main vein / artery to prevent clots from going to his heart or brain. Then the will be taking him off the heparin so they can do a colenoskapy - or something like that. They are STILL looking for a cause to what is going on with dad. They are continuing to treat him for the Vasculitis but they aren't sure if that is actually what it is.

I have to head off to work - I'll check in with mom after lunch and give an update for how the procedure went - sorry this blog was more of a downer than most. I don't plan to do this very often - We just wanted everyone to be back on the same page and know that we have a long fight ahead of us. The MAIN prayer for now is that dad needs a diagnosis so we can begin to treat him and get him heading on the road to home!!!

Much Love to All from Mom - thanks for your concern, thoughts and prayers!

Update Coming

2007-08-27T22:47:00.000-04:00

Sorry for the delay in the updates. Mom and dad are doing okay - nothing super new. I will be giving a full update tomorrow.

No Feedings Yet

2007-08-24T22:19:00.000-04:00

Dad had a really good morning. This afternoon he was sick to his stomach (a side effect of the chemo and the gunk in his stomach). They raised his bed a little and suctioned a bunch of stuff from his stomach.

I guess I mis-understood mom the other day or maybe yesterday. They have a tube in his nose running down to his stomach to suction out stuff. They have not started feeding him again and now it looks like they aren't going to for a while. His stomach can't handle any food. They aren't even letting dad have ice chips. Mom asked why and the nurse said it isn't safe. Mom didn't ask any further on that - so not sure what that really means. Tonight they were going to start giving him nutrients through an IV - so he won't feel full but it will give him what he needs. Mom said that dad told one of the sisters that they should get going so that the nurses could feed him. He is a little mixed up about the feedings.

He is doing okay - his lips are dried and cracked. Heidi said it doesn't look very good. Of everything else going on - I guess his lips are not high on the priority list!

Morning Update!!

2007-08-24T09:38:00.000-04:00

Okay - so mom just called and her spirits are really up! Today dad is very awake and alert. He was able to express that there was pain in his back so they have given him some pain meds. Mom said that she got a slight squeeze out of his right fingers today - that is new! Until now he has only had a little squeeze in his left hand.

CAT scan of the abdomen showed CLEAR! No obstructions. His bowels are moving a little this morning. The doctor is glad they checked - now they figure there are air bubbles and swelling that caused the complication. The feeding tube is back in his nose - dad asked mom to have that removed. Of course she said they couldn't yet - 'maybe in a few days'. (I think she says that a lot so that he forgets for a while.) So he is getting nutrients again (if you can call the cans of ensure food).

Other good news, they bumped the oxygenation level to 40%. The Respiratory Therapist even turned off the respirator for a couple of minutes to see how dad would do on his own. Dad would take shallow breaths and the therapist would give an extra boost of air - but it's a beginning!!

They admit that they still don't know what dad has. They are treating according to the symptoms and info they have. They are postponing the EMG till next week. They said that their won't be enough of an improvement to see yet. Next week when they run the EMG - if there is a change for the good they will know they are on the right track - no change and we start over again or wait a little longer for results.

They did take the picks out of his neck. That means that they are sure it is NOT GBS and they have quite the Plasma Exchange for good.

Summery: Dad is awake and alert today! Today is better than yesterday! And Mom is encouraged by the small changes! GOD ROCKS!!! - thanks for the prayers!

Hey - thanks to everyone for all the cards. Mom & Dad got like 7 cards two days ago, 4 more yesterday. She continues to hang them on the wall around the window - she said she is almost out of room!!! - You are all so wonderful. Thanks for loving and caring for my folks!!

Late Posting

2007-08-24T08:32:00.000-04:00

Mom called last night but we were without Internet - so here is her info late.

The doctor reported that some of the biopsy report came back and was negative. That should be good news except that it did not confirm or deny the Vasculitis diagnosis. They are pretty sure that it is this latest diagnosis so they are going to proceed with the treatments. Today (Friday) they are going to do a new EMG before the 3rd treatment and plan to continue with the chemo treatments every other day. Let's continue to pray for a diagnosis and treatment. It would just be so wonderful to know what is going on with dad.

Dad is still on the 50% oxygen. That is good but not great. Today they will be doing a CAT Scan of his abdomen. They have stopped the tube feeding for the last two days. Dad's bowels have slowed down for the past four days and they want to be sure that there is no blockage in the abdomen or bowels.

Mom had the two goals yesterday: getting the special 'boots' and the 'sip & pull straw'. She checked into both but came up shy. The 'boots' need to be specially fitted so they are waiting for someone to come and do that - it's on the list. For the 'straw' she said that they are working on it - but he needs a little more strength and he needs to learn how to do it. Mom said yesterday morning dad seemed to be doing good - but by afternoon he didn't look like he knew what was going on and was having a hard time understanding things. Mom isn't sure if it is the medication, sedation, or exhaustion.

Hopefully I'll be talking to her around 10-10:30. We'll let you know how they are at that time!
Blessings!!!!

Encouraged

2007-08-23T10:58:00.001-04:00

Mom called around 10am this morning. The doctors had just made the rounds and mom had a chance to talk to the doctor at length. The doctor was very encouraged with dad's reaction to the heparin. They feel that dad is back to where he was a few days ago before the clot scare. He seems to be understanding again. When mom got to his room this morning dad puckered up for a kiss. The oxygenation level needed had risen to 80% in the last few days. This morning they had him down to 50%. The CT Scan of dad's head came back clear!! - They will be doing another CT Scan or MRI with in the next couple of days to be sure there are no bleeds in the brain. Mom is excited that his grip has increased a little again. The doctor is going to talk to Neurology to see if they plan to do the last "Plasma Exchange" treatment or not. If not - they will be removing the pick that is in neck out. That should also help with the comfort level. Now dad seems to lean to his left a lot. We think when he leans to the right (where the neck pick is) that it is uncomfortable.

One of moms goals for the day is to get a "sip & pull straw". It is some form of nurse call so that dad can pull in his breath or blow out and it will alert the nurse that he needs help. Since he has been at U of M when he is alone there is no way for him to get help. If they can get this devise there and hooked up I know that mom will sleep better and be able to leave without feeling bad or as bad. He does need a little more strength to be able to utilize it because he will need to pull his head off the bed to reach it - and right now he is unable to do that. She is also trying to get "boots" for his feet. The purpose of the boots is to get dad's feet to be straighter. Not hanging down. It will help with the recovery process once he gets better enough to do Physical Therapy. Right now his toes are dipping down with the foot hanging. It has been in the hospital four weeks yesterday. Unbelievable - some days it is like 'No Way' other days it feel like it has been forever.

Tomorrow my sister, Missy, and her son will be going to visit. Heidi is planning to pop up during the weekend.

Ultra Sound is Clear

2007-08-22T21:38:00.000-04:00

GREAT NEWS! The hospital had an ultrasound of dad's legs done today and there were no additional clots in his legs. They also did an ultrasound of his heart - awaiting the results - and this evening the did a CAT Scan of his head. They are looking everywhere to determine that he is clear of clots to lessen the potential of a stroke.

Mom said when they send dad out for tests it takes 5 people to get him from point A to point B. One is holding all the wires, another is squeezing a hand pump to keep him breathing, another to pull one of three towers with meds, fluid, & stuff, I don't know what they all do - but it is quite a crew. Mom is still really pleased with dad's care and how the nurses and doctors are willing to talk her through each new thing that happens.

Mom talked to the nurse around 9:30 and dad was resting comfortably. Melissa - the nurse - has been dad's nurse a lot. It is nice because mom likes her and she is getting to know dad and what he is and is not capable of.

Mom and dad want everyone to know that the prayers are holding them up and they really appreciate all the cards that have come to the hospital and their home. Since it looks like dad will have his room for a while longer - mom has begun hanging the cards up around the window. Thanks for the support and encouragement!

Major Set Back

2007-08-22T14:52:00.000-04:00

Last night / today we had a set back with dad's health. The CT Scan that was preformed last night shows multiple small clots and one significant clot in his lungs. The large clot spans across his lungs. The doctors are very grateful that the student doctor last night ordered the CT Scan, otherwise they wouldn't know it was there.

Up to this point they have had the leg socks that help avoid clots and he has been receiving heparin shots a few times a week as a precaution - it just didn't work. He will now be receiving the heparin via an IV. Because of the new med he is at more of a risk of a bleed. They are talking about placing a "Green Field" filter in his lower body to filter any additional clots that might come from his legs to the lungs.

This morning dad was not as clear as he has been. Mom said he didn't seem as if he was with it and wasn't understanding things. She asked the doctor if dad had already had a stroke - he said he doubted it. Although it is a concern. Especially since he won't know if there is a new numbness or swelling. Everything is numb and he is still swollen from the additional fluids to keep him hydrated.

Our prayers are for dad's safety during this crucial time as the clot diminishes or breaks up. Also for the doctors and nurses as they continue to make dad comfortable and make decision on his care. And for mom as she sits, watches and prays!

Lunch with Friends

2007-08-21T21:11:00.000-04:00

Mom said that dad was not as restful today as he was yesterday. He was having a hard time breathing. It causes him to get uptight and panic - but it is good. The respiratory therapist said that the lungs are shedding a lot of the 'gunk' that's in the lungs. They have been doing more deep breathing treatments and suctioning out his lungs. They had an x-ray done today of his lungs and they look better. Dad is feeling the 'gunk' in there and isn't strong enough to cough out the stuff. Tonight they are planning to do a CT scan of his lungs to make sure everything is doing okay.

It also looks like we have a new diagnosis. Vasculitis:

Vasculitis is an inflammation of your blood vessels, which include your veins, arteries and capillaries. Also called angiitis, vasculitis causes changes in the walls of your blood vessels, such as thickening, weakening, narrowing and scarring. Inflammation can be short-term (acute) or long-term (chronic) and can be so severe that the tissues and organs supplied by the affected vessels don't get enough blood. There are several types of vasculitis but all types of are rare. Though some forms of vasculitis improve on their own, others require treatment — often including taking medications for an extended period of time. (excerpt from the Mayo Website)

The doctors are pretty sure that this is what they are dealing with. There are several types of Vasculitis and there are a few that are similar. The results from the nerve biopsy they took yesterday should be able to help narrow down which type we are dealing with. They don't want to wait to treat him until the tests come back at the end of the week so today they started dad on the new treatment. It involves steroids & chemo. The goal is to stop the damage from continuing. There is a risk that dad will be more prone to an infection (because of the chemo) so they are also starting dad on an additional antibiotic. They will give this treatment 3xs a week.

Mom feels that dad is weaker today than he was last week. He could give her fingers a little squeeze, but was unable to lift his hand at all and only pushed his foot back against her hand 3xs before he couldn't do it any longer. She told him he did a good job each time - even though he was unable to actually do it. She is trying to keep his spirits up - but it is hard.

GOOD NEWS today was that there were a few women from mom & dad's church who drove out and took mom for lunch. Mom said it was very nice and she really needed to be able to laugh with some friends for a while. THANKS LADIES!!! You helped mom more than you will ever know!

I'm putting a link to the Vasculitis site from the Mayo Clinic Website. Again, there are a large number of different types of this disease. We won't know for a while what exactly they are dealing with - but the Great Physician knows what is wrong with dad and how best to treat him. Thanks for your continued prayers.

Quick Note

2007-08-21T07:52:00.000-04:00

This morning Rachael and I are heading out of town for the day. I will blog tonight after supper. Have a great day - we'll let you know how the folks are later.

Mom Called

2007-08-20T20:44:00.000-04:00

Mom called tonight to let me know they had a good day. Dad was more awake than he has been in a few days. Less pain than in a while also. He didn't remember us being there yesterday or that Pastor Cal was there earlier today. Mom said that it seems that he doesn't catch everything - but she is thrilled that he is more content with less pain.

Side note: ISN'T THIS RAIN FANTASTIC??!! God is SO good!

News

2007-08-20T17:01:00.000-04:00

Well, since you have all been checking through out the day and I'm finally blogging - you can probably guess that yesterday at U of M Hospital was rough. It's just so hard to see mom and dad struggle through this.

Yesterday and again today, dad has been sedated. Yesterday morning mom told him we would be coming, but while we were there he couldn't wake up. That's okay - but very hard to see him. Rachael and I did fall apart a little. At first she was good - until she took a deep breath! Nate also saw grandpa. Ben stayed in the family room. I don't know how we would be able to explain what he sees with his limited ability to have a conversation.

The results from the CT Scan came back clear (that was of his abdomen & pelvis). Clear is good - so his pain is just the aches and uncomfortableness that comes from three and a half weeks in bed - no additional infection. This morning they did the Nerve Biopsy. There won't be any results on that until the end of the week. So for this week they will just be doing maintenance on dad. Keeping him as comfortable and pain free as possible.

Today Pastor Cal was with mom today. When I talked to her there were having lunch in the cafeteria.

Dad is still unable to communicate well. Pray for his frustration and for mom to have unlimited patience with him. The nurses continue to be gracious and helpful! The folks have a long way to go - please keep them in your thoughts and prayers!!!!

Nothing New

2007-08-18T22:27:00.001-04:00

'Nothing New" - That was how the conversation with mom started out tonight. When mom left, the evening nurse promised to keep dad comfortable and to check in on him often. Mom said dad is totally unable to push the "call bell" if he needs help. Mom hates the thought of dad waking up scared - or just needing something and unable to get someones attention. She remembers being on pain meds or sedatives and having scary dreams and visions of stuff that weren't there. Of course we have no idea what is going on in dad's head - but mom said sometimes he wakes up with an odd - scared look on his face and always seems to be glad to see her as he comes out of it.

Yesterday mom admits that both she and dad broke down a couple of times. She said that all the information was started to hit her and she was just so tired. The doctor took time to talk with mom this morning - in a bunch of additional words - told her that they really want to see dad get better and they are working their best on figuring out what is going on - and they are sorry that things are not progressing well right now but they aren't giving up.

Tonight Ben & I looked through a bunch of pictures and made a collage for dad. We are going to show him tomorrow and then hang it on his ceiling. Mom said he spends a lot of the waking time just staring up because that is the way he is facing and he can't move on his own (not even to pick his head up and look around - I didn't know that before!). Hopefully we can disrupt things a little tomorrow and put a smile on both their faces.

I will not be posting again until Sunday night because we will be heading there for the day tomorrow. Have a wonderful sabbath day!

Afternoon Report

2007-08-18T17:16:00.000-04:00

Missy just called. She said they had a good visit and gave me a list of stuff mom would like brought tomorrow. Dad did not have the CT scan done last night - they expect to get it in tonight. They are pushing fluids again so dad is very puffy. He continues to have the feeding tube - it now goes in and down his nose. His throat is to swollen and sort to eat. He is also very weak. Mom continues to suction gunk out of his mouth (not sure if gunk is a word - but you get the idea).

Missy said that this morning dad keep trying to say something over and over. They tried with the standard questions - but he got frustrated. Finally the nurse had him say it really slow, one word at a time. Dad said, "Find out when I can go home." That was really hard for everyone. Of course there is no way dad can come home - or even back to GR right now. This afternoon was even harder the for girls and mom. Dad said, "I want to go home." Missy said there were tears all around and Bri, my niece, started crying.

Sorry - I'm done for now - I'll give you an update tonight after talking to mom.

Going On

2007-08-18T11:05:00.001-04:00

Dad had a rough morning when mom got to his room at 9am. They had moved dad around quite a bit - changing bedding, bath, & the respiratory therapist had been there to clean his lungs (a lot of blood and goop from the surgery yesterday so it took longer than normal) - so it took a little to get him comfortable. Dad is still unable to talk although mom says it is not for a lack of trying. His lips are just a moving! My sisters, Missy & Heidi, are up there for the day as well as my niece, Brianna. When Brianna went into the room dad puckered up and there was no dough he wanted a kiss! When Bri told grandpa she loved him - his lips moved - I can't imagine how frustrating that is. To not talk, unable to write notes or type - well I'm sure anyone reading that didn't know me before this event now knows that I have quite a bit to say!!!

The good thing about all the moving is that it get dad's blood pressure to bump up a little. He is still having it in the 80/50s - but mom said not the scary lows. There continues to be a medication they give him when it starts to hang out low.

I hope and pray that mom and dad have a good day with the girls. My turn tomorrow.

Thanks for checking in! - -

More Tests

2007-08-17T21:24:00.000-04:00

Dad continues to be uncomfortable and in some pain. Tonight they were going to do an additional test. It will be a precautionary test, a CT Scan of his abdomen and pelvis. He has a hard time staying comfortable when he is awake. Mom is always trying to read his mind and help him situate. The doctors chalked it up to him being in bed for over 3 weeks - but today they decided to send him for a scan to be sure that it isn't anything (infection or something). Now that they aren't sure what is going on - they are going back to the drawing board and starting over.

Mom left dad a little after 5pm. She was with him for a little over 8 hours today. They have been giving dad a light sedative and continued pain medication.

Monday dad is scheduled for a 7:30 am Nerve Tissue Biopsy. The Hematologist doctor has also ordered new blood work. St Mary's Hospital sent several tissue slides, blood vials and test results - but the U of M doctors are starting over with fresh eyes.

Pray for dad's comfort this weekend.
For there to be answers within the tests they are doing
Pray for mom to continue to be patient with dad
Also for mom to be willing to ask the questions she has and for the doctors to take the time to answer her

Mom did say that as of yet - dad is not able to communicate any better than before the trec. He moves his lips (mom said sometimes he moves his lips very fast) but no sound comes out. He is just so weak! That has also been a disappointment for both of them. Mom continues to go through the list and he nods his head yes and no. She is not good at lip reading. At lease a couple of the nurses have been successful at lip reading.

Thanks again for checking in. Much Love to Everyone!!!

Frustration!

2007-08-17T12:06:00.000-04:00

The EMG that was done yesterday morning has presented questions about dad having GBS. They have stopped the Plasma Exchange (there is a danger of him getting an infection if he doesn't need the treatment). They plan to do a nerve tissue biopsy and reorder blood tests. The doctors are puzzled and when mom tries to get information she feels she is getting the run around. It seems that right now the doctors have no clue what is wrong. The doctor said that the group of specialists would be gathering together again to discuss how they should proceed. The EMG should have shown that the myland around the nerves were damaged, but it is fine. Instead it is the nerves that are showing damage. If you remember, the Spinal Tap showed very high levels of protien in the spinal fluid. There are different rare infections that could be going on - or it could still be GBS.

To say they are frustrated is an understatement. I didn't even think to ask if dad was able to talk this morning. It could take some time for him to learn how to talk around the tube bypassing the voice box. It will take significant air to push out sound. - But as of right now I have no idea if he is more comfortable or able to communicate.

Missy & Heidi are going to see the folks on Saturday. My family will be traveling after church for the afternoon on Sunday and hope to take mom out for dinner.

Thanks for checking in - If we find out anything - it will get posted!

Ordinary

2007-08-16T21:06:00.000-04:00

Dad is out of surgery and back in his room. The doctor said that it was very ordinary and went well. At first they talked about sedating him for the night so he wouldn't pull out anything but decided to only partially sedate him - enough to keep him comfortable - because they are still concerned with his low blood pressure. He will have some stitches in for a couple of days then they will take them out.

Mom is making sure he settles okay and then she is heading off to the motel. She is hoping to sleep in a little in the morning - although she hasn't been able to yet. We are hoping that dad is able to communicate a little tomorrow and that he is more comfortable with the trec than he has been with the tube down his throat.

This has been a long day for mom and us - thanks for sticking with us and for all the prayers!

Update

2007-08-16T18:29:00.000-04:00

Mom just called. The surgeon's team just called up and they had a surgery go long. They need time to clean up and reset the room then they will be up to pick up dad. Will be about an hour before dad's surgery. Which puts it at about 7:30pm. I'm just glad they will be getting it in yet tonight. I would have hated for dad to have to wait all day tomorrow also.

Check back later tonight to see how it went! Please KEEP PRAYING!!!!

WAITING

2007-08-16T17:23:00.000-04:00

As of this posting dad is still waiting for surgery. Mom & dad did request a light seditive so dad is resting right now. There doesn't seem to be a reason for the delay - just running late. Mom will call as soon as she hears something.

Thanks for checking in!

Thursday Morning

2007-08-16T12:18:00.000-04:00

Dad is doing good right now. When I talked to mom there were a bunch of technicians in dad's room. They are preparing dad's body for an EMG. If I understand mom correctly they hook up dad's muscles to little electrods and then stimulate the muscles to see where their response is compared to a previous test. Dad will also have an EEG this afternoon before the surgery.

I look forward to touching base after the surgery and letting everyone know how it went.

Have a good day - and pray without ceasing!

A Restful Afternoon

2007-08-15T21:37:00.000-04:00

Today dad had a restful afternoon. The nurses have been doing their best to keep him comfortable. His medication included both a pain and sedative. Tomorrow they will be bringing dad in for surgery at 4pm (for the trec).

Mom said he is discouraged and disappointed that he is not getting better. He is also anxious about the surgery tomorrow. I think it is more of a procedure under normal circumstances - but because of dad's critical health it is being treated as a surgery.

Prayer Requests:

That dad has a restful night sleep
For mom to continue to be strong - but admit it if she needs help
For dad to feel peace about the surgery tomorrow and that he not worry about it all day long
For dad and mom to see small signs of improvement to lift their spirits
For the surgeon, nurses and others that will take part in the surgery tomorrow
For the surgery to produce a clean trec, clear airway and that dad will be able to speak and eat when it is over

Not Much Change

2007-08-15T10:24:00.000-04:00

Just hung up with Mom. She sounded tired and said that dad is very uncomfortable. He is having some pain and is achy. He has actually asked to be sedated for today. The Plasma Exchange is already done for today so they are going to honor his request.

The doctor said there continues to be no additional improvement, but he is no worse either.

Today my folks seem to be light years away! My verse to cling to for today is: Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. (1 Peter 5:6-7)

Stubbornness Comes in Handy

2007-08-14T21:53:00.000-04:00

Mom was glad to share that dad had a more comfortable day than yesterday. The doctor continues to use less sedative but dad is handling being awake. Mom said his eyes look brighter and he has been looking around. He was uncomfortable earlier. They gave him some pain medication and he fell right to sleep.

Some additional information about the benefits of using a trec. It will keep dad's lungs cleaner. Right now with his mouth open and the tube going down he can get secretions in his lungs that need to be cleared out. With the trec that won't be as much of an issue. Also the trec tube will bypass the vocal chords so he will be able to speak. When they get ready to wean dad off the ventilator it will be easier. When the pull the vent tube it can cause swelling so that if dad needs to be vented again it could be difficult if his airway swells. By using the trec they can just shut it off during the weaning process and turn it back on if needed.

My sister, Missy, said that dad's stubbornness is paying off - he is doing well!

A couple of fun things happened today. My mom went down for an early lunch today. She came back and dad was trying to tell her something. She went through the list: pain, cold, etc. Dad was getting a little frustrated with her. Then out of the blue mom asked if Walt had stopped by. Dad's eyes got very big, like to say - where did you pull that name out of. What she didn't tell dad is that I had told her last night that he would be stopping by today. I think we'll let dad ponder a while on that and wonder where she pulled that name from and how she could have known! - Okay - that might be a little mean but it's just our way of having a little fun!

The other "fun" thing - I promised mom I wouldn't share - - got to keep some of the family secrets!

Two Steps Forward - One Back

2007-08-14T13:45:00.000-04:00

Okay - I think I'm ready to report!

As I said yesterday, dad had a long uncomfortable day. The neurologist really wanted to interact with dad so he wasn't sedated. The low blood pressure continued to be a concern through out the night and today. Today's report has some good and some not so good. Dad continues to be on the ventilator (respirator) and this was where I needed some clarification before communicating with everyone. Currently dad's diaphragm is very weak and not doing much for him. It is just another muscle that the GBS (Guillian-Berra Syndrome) has affected. The ventilator is doing a lot of the breathing for dad. The way it is set up - when dad takes a breath the vent helps him to get extra air that he wouldn't be able to get on his own and when dad doesn't breath - the vent is set that within a short time it will do the breathing for dad. Right now if he weren't on the vent he wouldn't be able to breath on his own. If that doesn't improve by Thursday or Friday they will be doing a Trachea for dad. To me that sounded awful - but mom and my brother-in-law (Jim) both said that if he needs help breathing for any length of time the trec will be better. He won't have that huge tube in his mouth and will be able to speak and answer questions and close his mouth. It will be much more comfortable for him.

Now for the blood pressure - one of the characteristics of the GBS is for the blood pressure to jump all over (very high / very low). But now dad's blood pressure is staying very low. He is ranging between 40/30 to 60/30. They really need to get the pressure up. They started him on two additional antibiotics that will hopefully help regulate this. It seems to be another type of infection going on - separate from the GBS. They always say if you want to get sick - spend some time in the hospital!

Good news is the Pulmonary Critical Care doctor is pleased with dad's progress. Dad is continuing to do well - even though he is very sick. The doctor didn't see any improvements with dad's grip over yesterday. But dad is stable and in the best place possible! Today dad has off from the Plasma Exchange. When I talked to mom earlier she was in the family room taking a break. Dad was sleeping and she didn't want to disturb him.

If anyone has a question - sorry. This is way out of our understanding and comfort zone. Thanks for hang'in with us and for all the prayers. Mom said she can really feel the prayers are working. I know she has broken down a couple of times when she has gotten back to the hotel room. I can't imagine holding it all together like she is doing.

Details Details

2007-08-14T10:52:00.000-04:00

Good Morning!
Okay - I just talked to mom but I think I got some info mixed up in my head so I'm waiting for my brother-in-law to give me a call then I'll get it into the blog.

Thanks for being paitent!
Cheryl

Evening Update

2007-08-13T20:55:00.000-04:00

Hello Everyone,

I just checked in with mom. She just got to the hotel and has locked the door for the night. She is looking forward to a deep sleep.

Today dad has a very rough day. Dad started the day with the 'Plasma Exchange' and the doctors taking away his sedation. The neurologist wanted to run some tests and interact with dad so he needed him to be awake. Dad was very cold - even though he was sweating. Mom said they put on several blankets but he couldn't get warm. They continue to push a lot of fluids - she thinks that has something to do with it. He was awake for most of the day. She said he was uncomfortable and sore. Sounded like the aches that you get when you have the flu for a few days. Dad also continued to have problems with his blood pressure today. For most of the afternoon it ranged about 60/30 which is way low. The staff keep a close eye on him. The doctor finally prescribed a dose of something to help regulate the blood pressure. After a little bit it went to where is should be.

Early in the evening mom was reading and dad tried to get her attention. She asked if he was cold, he moved his head no. Was he uncomfortable, he kinda lifted his shoulders and eyes like - well yes but that's not it. Then she asked if he needed a hug - he broke out in a huge smile. Mom said it took a minute to situate all the tubes, wires and stuff but she gave him a big hug. About 10 minutes later he fell asleep. Mom said if that was all dad wanted - she would have hugged him way earlier!!!

My sister Missy and her family are with mom today and tomorrow.

Have a good night. I'll update again in the morning after talking to mom.

Good Monday Morning to You

2007-08-13T10:36:00.000-04:00

More good news! I talked to mom this morning and dad seems to be doing a little better. The staff is in the midst of doing his 'Plasma Exchange' right now (9-11am) but mom was able to talk to one of the nurses. They said that when the doctors made the morning rounds they felt that dad had a little more hand strength than yesterday and was able to wiggle some of his toes. That was after just the one treatment last Friday. This week the treatments will be today, Wednesday and then Friday. It takes one in a half to two hours. Mom is very encouraged! Of course dad has a very long way to go - but there is definitely a light in the tunnel. One of the nurses said that when dad was critical they didn't mind mom being in the room all the time, but now that he is showing improvement and not on the critical list - they would like her to stick to the visitation schedule! Isn't that COOL?!

Mom is holding up VERY well! We are very proud of her and the strength she is showing during this difficult time. Again - thanks for the thoughts, prayers and note.

Long Day

2007-08-11T20:13:00.001-04:00

Okay - not to complain the THAT IS A LONG WAY AWAY! The trip was good with out any traffic jams so I should be thankful!

I haven't seen dad since Tuesday. He and mom both looked okay. Mom is holding up better than most would in her situation. I'm very proud of her. Dad isn't going to win any beauty pageants but didn't look like he was on death's door either! Dad has the respirator going into his mouth. I hadn't seen him like that before and it took my breath just for a moment. Not the big bruit man who used to let me jump on his tummy while holding my hands for balance. He is very swollen on his arms, hands, legs and feet. He started having signs of dehydration a few days ago so they have been pushing fluids. The swelling is a sign of that extra fluid. His blood pressure continues to jump into the 200s one minute and five minutes later is pitting in the 50s. UofM cut his sedation down so he is a little alert. I said a few different things to him and he responded with a slight head movement back in forth (no) or up and down (yes). One of those conversations was about his friend Gerrit from Godwin. The man mom was thinking of was not right. Then I described a guy I had seen a couple of time and he gave us a no. He then opened his eyes to talk - I told him to let it go, he could introduce us later. Also, when I first got there I leaned over and give him a kiss, said Randy and Ben were with me and that I love him. He gave a slight smile and moved his mouth. Of Course I know he was saying he loves me the most of all us girls (not really - but it sure sounds good). There were a few other times when mom and I were talking that dad would open his eyes and try to see us. I think he wanted to have a part in the conversation. I never saw dad move his limbs, but he squeezed moms hand when she asked him to. When we went to leave he also closed his mouth and leaned my way when I was kissing his cheek.

Dad has a very long way to go - but I feel we are in the right place and he is fighting to come back to us! The staff has been wonderful to mom and dad. I shared all the comments and emails we have received. Mom was thrilled and a little overwhelmed.

Sister Heidi found a great hotel for mom to stay in. Cheep week day rates and very clean. It's only about 10 minutes from the hospital. The best way to get them a note is email or a card sent to the hospital or their house (I brought up 4 cards today). Okay, okay - here is a funny! I opened the cards and read them to mom and dad. The third one was a postcard. I opened it and it was dad's chest x-ray from St. Mary's on July 8 stating that the chest x-ray was normal - opps! Defiantly not right! Mom and I had a good laugh over that one.

Uncle Stan is going to visit mom tomorrow (he is mom's little brother). We all continue to do well. Thanks for the thoughts and prayers. I KNOW mom and dad can feel the peace of the Holy Spirit with them.

Miss Understanding

2007-08-10T21:33:00.000-04:00

Well, I got a few facts wrong this morning. Sorry!!
The Plasma Exchange is one session taking about 1.5 to 2 hours. There is only one done in a day and it is done every other day. There will be 5 sessions in all covering 10 days. He got his exchange today and they don't do it on the weekends so the next time will be Monday. Mom said they pulled and put 7 liters of blood out of and into dad. The doctor said today that they hope for a noticeable change within a few days but that doesn't always happen. Sometimes the improvements don't show until the treatment is totally done with. His blood pressure and oxygen levels continue to have great fluctuation.
Randy, Ben and I are going to see mom and dad tomorrow. Hopefully I'll have a good report when I check in with you all. I'm bringing mom the notes of encouragement you have sent. I know it will be good for her.
Have a blessed weekend. Talk to you Saturday evening.

Friday Morning Scoop

2007-08-10T11:01:00.000-04:00

I just talked to mom. Okay - this is the scoop to the best of my understanding.

This morning dad was wiggling his toes for the nurse. Mom and sister Heidi did not get a response when there were there though. Right now Mom and Heidi are in the family room while dad gets a large IV into his neck. The IV has an in and out flow. They are going to begin to take out his blood and put in new plasma with his red blood cells. He will be getting this treatment 5 times a day, everyother day. He will be on this schedule for at least 10 days. They expect to be seeing some positive changes within a couple of days.

They are also starting dad on an antibotic along with steroids. They feel the lung concern is some type of pnemoinia.

Mom sounds good and very hopeful. Again, thanks for checking in on us and for all the encouraging notes.

Thursday EVENING Update

2007-08-09T20:40:00.000-04:00

Just spent some time with sister Missy on the phone (I'm actually talking to my family during this crisis more than I ever do - weird!).

They have already received the results of the Spinal Tap. The protein level they were checking is naturally at a 45. Dad's protein level was at 180. Yes, very high. The protein level is recorded as the protein in dad's spinal fluid. This is not a definite 100% diagnosis but about as good as it gets. They are going to proceed with his treatment as if he has GBS (Guillian-Berra Syndrome). This is known as an Auto-Immune Disease. What is happening is his immune system is attacking his muscles. The doctors won't give us a 100% diagnosis. We will know shortly depending on if dad begins to improve.

Treatment: They are going to start a 'Plasma Exchange', which means they will be pulling dad's blood out, removing the damaged cells, then putting back his own red blood cells. Then they will be adding new plasma into dad which comes from donors. We do not need any donors for this process.

Missy did say that dad's blood pressure and blood oxygen levels continue to drop and climb. His oxygen level is sometimes at 60% and his blood pressure has been very high and then will drop to 50/30. The good news is this is very characteristic of GBS. Tonight they have reduced his sedative which has helped to stabilized the blood pressure and blood oxygen level. He has been responding positively to voices and touch.

Prayer Requests:

Pray that dad has a good reaction to the plasma exchange and his body responds quickly
Praise God for the wonderful nurses and doctors who have been caring for dad at UofM
Pray for peace and understanding as dad is sometimes brought out of the sedation (currently he seems to become very anxious when he is not sedated)
Pray for mom who continues to stay in Ann Arbor
Pray for travel safety as our immediate family travels back and forth

** We are not medical professionals - we are relaying the above information as best as we can under the current stressful situation. Thank you for your understanding.

Thursday Afternoon Update

2007-08-09T16:01:00.000-04:00

Sister Missy just called with an update. Dad's blood pressure has been going up and down today. As high at 230-250s. Yeah - that is very high. The neurologist was in this afternoon with a couple of students. He is recommending a new spinal tap done. They will be looking specifically at dad's protein level. If it is high - there is a strong chance that he is dealing with 'Guillain-Barre Syndrome'. It is something they have been kicking around since dad was first admitted in GR. The last spinal tap did not show a significant increase with his proteins but can take time to show up. If it is positive they will be removing his plasma and filtering it, then putting it back in - what does that mean - I have NO idea!! If not - they have other ideas to move onto next.

A huge blessing has been the personal care of the nurses. Dad has a nurse to himself. They are showing great care in taking care of him and responding to mom and the questions she has. God is so Good!

I will continue to update everyone when the phone calls come. I will try to install a link to the possible syndrome that they have mentioned. Check out the right hand side of your page. Have a blessed weekend!

In His Care -
Cheryl Smith and Family

Hospital Address

2007-08-09T10:38:00.000-04:00

UofM Hospital Medical ICU
Bill Berends Rm#6820
1500 E. Medical Center Drive
Ann Arbor, MI 48109

Mom is Encouraged!

2007-08-09T10:29:00.000-04:00

Good Morning All,
Just got off the phone with mom. She is well rested - stayed in a hotel last night.
The team of doctors were just in the room before I called. The CT scan they took yesterday looked a little better from his previous one. They continue to look at weaning dad off the respirator. Very slow process. Although they have turned down the oxygen a little the weaning has not yet begun. They are keeping dad sedated. When he starts to come around his blood pressure rises and he becomes anxious. UofM has put him back on the steroids. They are considering putting dad on the plasma concoction to begin to fight off one of the optional problems. As yet there is no diagnosis
Sister Missy is on her way to spend the day with mom and dad. She just called to say she is on highway 23 going 4 miles an hour. She passed a sign saying "Traffic will slow" - she doesn't think her car will go slower!!! Sister Heidi will be heading over tonight through Saturday morning. Then it is my turn.
Again, thanks for the prayers. Mom is encouraged with today's news! PRAISE GOD for his goodness and mercy!
Cheryl

PRAISE GOD!

2007-08-08T11:03:00.000-04:00

Just got a call from mom. Dad is doing a little better. He is beginning to do some of the breathing on his own again. They are turning the oxygen down a little and see if they can begin to wean him again. The doctors have also started dad on a medication for pneumonia - just as a precaution. They suctioned a lot of goop so they want to be sure that pneumonia doesn't set in. Dad is still very weak. Most likely the trip was hard on him. Now that he is settled things are getting better.
Continue the prayers - They are working!

This Morning

2007-08-08T09:42:00.000-04:00

Mom called this morning. Dad is stable and sedated. He is very weak so the respirator is now doing all the breathing for him and they are regulating his blood pressure. They have also put in a feeding tube. Mom listed facts to me. She seems strong - maybe in a little bit of protected denial. She feels that he doesn't know when she is in the room - but his heavily sedated.
Thanks for your continued prayer support!

Arrived Safely

2007-08-07T21:00:00.000-04:00

Dad arrived at the UofM Hospital about 6:30 this evening. Right away his oxygen blood level was low. The doctors talked with dad and he agreed to be put on the resperator again - only if they promised to keep him sedated. They have also added an arterial line to measure his blood pressure constantly (instead of a blood pressure cuff).
Mom is very tired. She did admit that she got a little lost. She got off the highway for a restroom break and supper stop - and discovered the ramp to get back on the highway was closed. After driving around she got directions and found her way back. Upon getting to the hospital she made the wise choice to bring her walker - she thinks she walked about 2 miles before arriving to dads bedside. The nurses seem really nice. They gave her some blankets and an evening snack of milk and graham crackers.
If you would like to send a card, etc. - he is in the UofM Hospital Medical ICU rm#6820.
Again - thank you for the prayers and notes of encouragement. Mom has loved the comments and reads them to dad everyday.

Going to UofM

2007-08-07T12:07:00.001-04:00

Just got a call from mom. They are getting ready to bring dad to U of M Hospital. He has taken a turn and they are sending him to the ICU there. Pray for his safety during the travels and for mom as she drives by herself.

Please No Visitors

2007-08-06T16:23:00.000-04:00

Thanks for all the love and support that has already been demonstrated to my parents.

Yesterday, Sunday, mom and dad were blessed with a lot of visitors, friends & family – but it ended up being way to much for him. With their permission, we’d like to communicate that mom and dad love the cards and prayers but we’d like to limit the visits to immediate family and pastor/elder for now. He is just so weak. He wants to visit but his strength is being sapped out of him. Hopefully soon we can put the word out to stop by – but for now he needs to rest and get better – or at least quit getting worse!

Benji (my son) and I went up to see dad this afternoon. Ben stayed in the family waiting room with my sister while I went in. Mom and my sister were in the waiting room taking a break for about 10 to 15 minutes when we got there. I went over to dad's room and as I entered his eyes were big, face all red and his arms were moving about. He looked terrible. I tried to get him to tell me what was wrong - but he was panicking. They had a breathing c-pap machine on and he got claustrophobic. His room couldn't be closer to the nurses desk - but they had no idea what was going on with him. Mom felt terrible when she got there. Feeling like she had abandoned him. We got the machine off, cooled him down and then he was okay. It was HARD to see him like that. He then spent the next 20 minutes trying to cough and clear his airway. He is unable to generate a good cough. He tries and tries. They had to push up on his abdomen when he coughs to help him. His arms are still weak but he is able to move them, although not high enough to wipe his mouth, or even lay on his stomach. He can't use his legs at all right now. He is completely bed ridden. They try to have him sit up in a special chair for a few hours each day - it takes four people to move him over and back because he is unable to help at all.

So why am I giving the world this personal information about dad. 1 - he doesn't know I am! 2 - so you understand the desperate need for prayers and 3 - why we are asking for no visitors at this time.

Our pastor on Sunday said "God wants us to get to the Point when praying" so here are the points to pray for:

the biopsy results to come back with a definite answer
for the doctors to know how to treat dad
for the nurses to have a special measure of compassion and patience
for mom to feel peace and be able to rest when she leaves his side
for dad to remain calm, be able to articulate his needs and to begin to get better or just get completely healed

Thanks for checking in. Thanks for praying for my folks. ~ cheryl

Visiting My Dad

2007-08-05T15:55:00.000-04:00

Hey everyone,
This is Cheryl, Bill and Bea's oldest daughter. We just got home from a visit to dad. I'd love to say he is doing great and continues to improve - But I Can't! He is so very tired. He was sitting up in a special chair that gives him support. They wanted him up for an hour. At 45 minutes he was counting down to when he could lay again. His breathing is very labored and when holding his hand he could hardly squeeze mine. The doctors are still talking about sending him to U of M in the next day or so. He looks so old and weak. I'm just not used to seeing my daddy like that!
His spirits seem good, although you can tell he is scared of the unknown.
Good news is he has been moved back to the Neuro Science Center on the 5th floor. He is under a close watch but has a little bit of privacy.
Please continue to pray for he and mom. I feel this is going to be a long road to recovery. Thanks for checking out the blog. I'll be sure to get them any comments you post.

Saturday, August 4 - by Bea

2007-08-04T22:29:00.000-04:00

Hi folks,

Sorry I took so long to get this going but I’m not the computer guru - Bill is. It seems like every time I get a few sentences down a doctor would come in or Bill would need sometime. So my daughter offered to do the typing and sending if I wrote something for her.

It has been a long couple of months. The time line goes something like this: Bill had been feeling increasing tired over the past couple of months and had developed a cough that wouldn’t give up. The onset of problem was slow so he figured it was a mixture of allergies and old age (he had had a birthday in April). I finally convinced him to see Dr Thomas. On July 3 he was prescribed an antibiotic for walking pneumonia. A week later Bill was feeling no better. Dr Thomas wasn’t surprised since the x-ray had looked suspicious to him. Bill went to work at Godwin yet on the 5th, 6th & 7th of July. That Thursday and Friday evening he could hardly stay awake to finish supper. That Saturday we went to see our kids who were staying at a cottage and he could hardly wait to get home.

During this time the cookie jar was staying much fuller than normal so I knew something was wrong. The doctor told him to stay home from work. Of course I asked the doctor if he could do dishes for me – the doctor responded ‘only if you bring it to him at his recliner’. It was funnier at the time.

I don’t remember dates of all the testing, but he has had numerous EKG, X-rays’, blood work, ect. All we knew for sure was that the blood showed some type of conective tissue disease and the lungs showed some type of inflammatory lung disease. On the 18th of July he went in for a pulmonary function test. Bill did manage to get the lawn mowed that week (on the rider with several rest breaks in between). It was about this time his left foot started acting different.

On July 24 he had a Broncos-copy. The doctor hoped that would give us some answers. On Wednesday evening, the 25th, he fell twice. We had a very hard time getting him off the floor and into a chair. A call was made to the doctor who insisted we get him to St. Mary’s Hospital.

Since being at St. Mary’s there has been a lot of testing, MRIs, Spinal Tap and lots of blood draws. Bill has continued to grow weaker and now he has no reflexes in his legs and his sensory reception is ‘goofed up’. Sometimes his legs and feet feel numb or tingly or sometimes when moving him it feels like sandpaper. He can lift his legs less than an inch off the bed and they are no longer able to support him. He is restricted to his bed. His arms are now beginning to feel the affects. At this time Bill is afraid of becoming completely paralyzed. It is scary and very frustrating for Bill, myself and our girls. Yesterday, the 3rd, in an attempt to find some answers and to develop a plan, the thoracic surgeon did a biopsy to get some tissue from enlarged lymph nodes from the chest and some muscle tissue. He also took tissue from both the upper and lower areas of his left lung. The surgery was a little longer that we expected but went well. Bill remained on the respiratory through the night and (praise God) was able to be weaned off it this noon. He is now breathing on his own but it has become hard. He is afraid he will just stop breathing. He still has a chest tube from the surgery and is very uncomfortable. They are giving him some pain meds but he doesn’t seem to be able to get comfortable more than 5 to 10 minutes at a time. It is frustrating because he is unable to reposition himself with assistance. He is still in intensive care tonight. Tomorrow they hope to move him to intermediate care.

There is still talk of transferring him to the U of M Hospital but that is on the long list of unknowns. His doctors have been in close contact with the U of M Doctors as they continue to proceed. He has started receiving some IV steroids and some type of plasma concoction. We expect to get the results of yesterday’s biopsy in 5 working days.

We are praying that they will find answers soon and begin to treat the condition. We both appreciate your thoughts and prayers. Please continue to pray, especially for Bill’s peace of mind and patience with the system. We will try to continue to track his progress and keep you updated via the blog. Feel free to share the blog address with people you know that will keep Bill in their prayers.

Love,
Bea and Bill

Old Farts and New Tricks

2007-07-29T19:09:00.000-04:00

This is the first of many blogs. Mom and Dad are going to learn some new tricks in order to keep us updated on dad's progress without having to make 20 calls each night when she gets home. Feel free to pass this blog address along to your friends and family and ask for prayers on behalf of dad.
Love,
Cheryl