Discussion: View Thread

Your help needed

  • 1.  Your help needed

    Posted 05-17-2019 17:17
    ONE colleagues and friends,

    I apologize for the deeply personal nature of this message. (And if the moderators deem part or all of it to be inappropriate for posting, I understand). Also, apologies to those of you who are IABS members and already know about this. But I need your help. Many of you know my wife Pam, who has been a behind the scenes supporter of ONE since the earliest days of its founding. She has been to many ONE meetings and has enjoyed interacting with so many of you. Pam is in intensive care in Springfield IL after stopping breathing early Wednesday morning. Pam's heart is pumping at a slightly reduced capacity without assistance (and had been since she arrived at the ER yesterday). Her body is maintaining a stable blood pressure without medication, which is an improvement over when she was in the ER. She is breathing some on her own but is still on the ventilator. She is obviously receiving various medications, the most significant of which are anti-seizure medicine and, at the moment, sedation. The doctors have apparently ruled out a stroke. Whether a heart attack occurred is not known, but if so it does not appear to have been a major one. What may have happened is that she aspirated and choked, and this may have triggered a small heart attack, or vice versa. We don't have any idea how long before I woke up to her "agonal" breathing this might have occurred. As a result, her brain may have been deprived of oxygen for an extended period. The major concern is brain injury due to lack of oxygen. Pam has responded to pain, such as pinching, but has not been responsive to voice or physical stimuli that call for a voluntary response, and on the few occasions that she opened her eyes yesterday there was no focusing or recognition. On the first day that is apparently not unusual. The question will be what happens over the next 24-48 hours, and then the 5 days after that. I have been told that, unlike a stroke, function that has not at least begun to be regained in the first 5-7 days is rarely ever regained in oxygen deprivation brain injury cases. Pam would not want to live out her life in a vegetative state. I - and I believe she - would be content if she could think clearly, communicate (hopefully verbally), feel positive emotions and enjoyment, smile, and touch, hold, and interact with her grandchildren so that they know that she loves them. Of course, I hope for so much more, but if she could recover to that extent, it would be enough. At the moment I am discouraged and scared. Yet I have faith that God can work miracles if they are in accordance with his will. I also have faith in the power of prayer. Our church congregation's bishop (pastor) and I are going to give her a priesthood blessing this afternoon. Please pray for me that the Lord's spirit will guide me and inspire me to know what blessing to give her. The last thing that I want to do is help her survive physically without external intervention but have her spirit be trapped inside her body and be unable to communicate with those she loves. That, for her, would be hell. I have felt, and truly, truly appreciate, the many prayers that have been offered for me. But most importantly, please pray that God will bless Pam!

    Gordon

    ------------------------------
    Gordon Rands
    Western Illinois University, USA
    ONE co-founder and past chair
    ------------------------------


  • 2.  RE: Your help needed

    Posted 05-25-2019 05:05

    Colleagues,

    I want to give you an update on Pam's condition as of Friday 5/24 at 3:00 PM.  MIRACLES ARE HAPPENING!

    In my last update I said that we had been told that if Pam did not progress significantly by day 5-7 she was unlikely to do so.  On Sunday (day 5) her neurologist said he didn't think she was likely to recover much function beyond where she was.   On Monday (day 6) we learned that some people believe this sufficient initial progress can occur up to as late as day 12, at which point the ICU protocol calls for replacing the ventilator with a tracheostomy, and the mouth feeding tube with a direct one through the abdomen -- a step up in invasiveness.  So with that information, we decided we would wait until day 11 to make a final decision on whether to continue Pam's care. But Monday evening her heart rate suddenly jumped to 290 beats per minute, over three times normal; in a matter of minutes a team of 15 was in her room, applied one electric shock, and her heartbeat returned to normal.  Just one shock was a good sign, but it was still unnerving. As I walked to the hospital Tuesday morning (day 7) I was very discouraged, and I was praying for a miracle.   During the day there were several small signs of small progress, basically with more small physical movements.  

    On Wednesday (day 8), I got to the hospital late in the morning to discover that the doctors had decided she had improved enough physically (specifically a lot more large movements of her arms and legs) to replace her ventilator tube with a simple oxygen nose clip.  By late afternoon she was off that and was receiving no breathing assistance at all.  The neurologist came by and said that based on all her progress "all [previous] bets are off" and that he wished such dramatic changes happened more often.  An order was placed for physical therapy, the physical therapists came up, and they soon had Pam sitting on the edge of the bed with limited support.  They placed her in a chair, saying they wanted her to tolerate that for at least 10 minutes, but hopefully up to an hour.  She was in the chair for at least an hour with no problems.  Then a social worker came by to discuss possible rehabilitation facilities that Pam might be transferred to as the next step in her care. She attempted to vocalize but only could manage occasional moans.  She had a very thin feeding tube installed through her nose.  No feeding started, however, because her cardiologists had decided that she was physically able to have a cardiac catheterization (a diagnostic procedure to see what problems exist in her heart).  So Wednesday there was tremendous physical progress.  But there was no clear cognitive progress, although some of her facial expressions gave us reason to hope that some was occurring.  

    Yesterday (Thursday, day 9) there was additional progress.  Most notably she began to say simple words like yes, sure, yeah, OK, ow, and ouch.  The one multiword phrase that she was saying was "love you too" -- that is unquestionably my favorite response!  In addition, her beautiful smile began coming back, and she occasionally even seemed to make a small laugh!  The cardio catheterization went well, and found one slight blockage, but nothing to require a stent or any other surgical treatment. 

    Today (Friday, day 10) I arrived at the hospital to find that my daughter had begun to play music from Pam's Amazon playlist for her, and on "Leader of the Band" Pam had started mouthing some of the words!  For over an hour, and then for a shorter time later in the day, she listened to her playlist and often mouthed some of the words. Sometimes she would turn her head a little and close her eyes and purse her lips to add a little performance flourish, just as she used to when singing!  While her brother, a retired car dealer was here visiting her, she even vocalized the last two words to "Hot Rod Lincoln."  You could tell from the smile on her face and the look in her eyes that she was excited to be remembering the words. 

    These responses do not occur all the time, so there is clearly a very, very long way to go in reestablishing her cognitive and motor abilities. There are of course so many things that need to improve in order for her to one day have what she would view as a decent quality of life, but my hope continues to grow, and we will see what each day brings.  She is going to be transferred out of ICU and into an Intermediate Care unit as soon as they have a bed available, so that is a sign of growing stability.  She would be there for at least a week.  She is also going to have a defibrillator implanted to prevent any further cardiac incidents.  I also received a phone call from the best of the rehabilitation facilities, the Sylvia Brady AbilityLab in Chicago, indicating that Pam may well be a good candidate for admission.  They specialize in working with individuals who have suffered brain injuries. Hopefully, she will be accepted there so that she can receive the greatest possible expert treatment in the long arduous process that lies ahead for her.

    So please, continue to pray for miracles for Pam!  Please specifically ask that her injured brain cells will heal and that new ones will grow, that damaged neural pathways will be reestablished, and that the misfiring and jumbled static that is still occurring inside her brain will further calm and ease and clear.  Please pray that she will be comforted and will not feel scared or hopeless, so that she can relax and think clearly.  Please pray that her cognitive abilities will be restored, as well as her ability to hear and process, and to formulate and express her thoughts verbally.  Pray that she will not be trapped in a damaged brain but may come all the way back to once again be the intelligent, loving and compassionate person that she has been for so many years.  In addition, she needs to make progress in controlling her large motions, as well as her fine motor skills and her swallowing and speech abilities. At the moment she has a very bad bottom rash from some leakage that was occurring from her catheter and from loose bowel movements.  She is now on a rectal catheter, which should help.  So healing from the rash and regaining control over excretory functions are other specific needs she has.

    Again, I know that you, and all of those praying for and sending good thoughts out for Pam, are helping make a positive difference in her life!  Please continue to do so and ask God to bless her that she can come all the way back in the days and weeks and months ahead! 

    Finally, thank you to all of you who have taken the time to write any special impressions of Pam and memories of specific experiences with her!  They have been such a comfort and inspiration to me.  I have read many of them to her and will continue to do so.  I truly believe that these will aid in her recovery and be a blessing to her grandchildren and future descendants.  If you haven't had time to do so yet, please do so!

    And thank you for the beautiful, thoughtful messages that many of you have written to me!  I truly appreciate them and have felt lifted and supported throughout this experience.  From the bottom of my heart, thank you to all of you for the love and concern you have shown for Pam and for me!  God bless you!

    Gordon Rands



    ------------------------------
    Gordon Rands
    Western Illinois University
    Macomb IL
    (309) 298-1535
    ------------------------------



  • 3.  RE: Your help needed

    Posted 06-03-2019 05:53
    Colleagues

    Here is this week's update on Pam's situation.  My apologies for not getting something out sooner, but as conditions have changed there have been more meetings and uncertainty, most all of them in a good way.  I will stick with the daily summary approach, even though some things are beginning to blur together at this point. I apologize for the degree of detail, but have gathered from some of your comments that you appreciate the details, so here goes.

    On Saturday May 25 (day 11) the mouthing of words to songs continued.  Four of the women from our congregation came in two shifts to stay with her so that my daughters and I could go to the Nauvoo Illinois Temple.  During the time that we were in the temple and were praying for her she was apparently especially alert, and was both silently singing with gusto as well as answering questions and asking for me and our oldest daughter (Katie) by name.

    Sunday (day 12) I went back to Macomb for church, while my daughters (and Katie's family) stayed in Springfield and she listened to hymns and mouthed many of the words to those.  After I got back we talked until Jennie and Julia needed to go to the train station.  They had been here since early on days 2 and 3. It has been such a blessing having all of our children here.  Pam appeared to realize they were going and was a little sad.  After I got back from walking with them to the train station Katie was reading trivia questions to her, but Pam didn't seem interested, and said something (I can't remember what) that indicated dissatisfaction with her situation.  I told her again what had happened, and this time she clearly understood what I was saying, replying with things such as "really?", "how?", "oh my gosh", "that's really cool" and other responses that were very appropriate to what I told her.  She was thrilled and amazed when I told her that people around the world were praying for her, and some of the countries those people were from.  After about ten minutes I asked her if she wanted me to tell her any more right then and she said "no" which was a more thoughtful and less automatic response than yeah or OK would have been.  When the nurse came in for some medicine, cleaning up and repositioning,  she asked Pam if she knew where she was; Pam didn't reply so she asked her if she as at home and Pam said no, and then if she was in the hospital and she said yes.  She asked Pam to help turn herself, take a deep breath, squeeze her hand, and similar requests, and Pam fulfilled them.  She said this was real progress, and as she left the room she told Pam good night, and Pam replied "good night" to her.

    Monday (day 13) (Memorial Day): I was at the hospital with Pam much of the day by myself, having stayed there on Sunday night for the first time. Katie and her family left around noon for Minnesota. Pam had slept much of the day until then.  I put on her music which perked her up and she again was mouthing the words.  The speech therapist came in and fed her most of a container of applesauce, along with some ice chips and swallows of water; however, after a spoonful of a "honey thick liquid" she coughed, which concerned the therapist.  After that Pam started talking more, including asking some questions.  It became clear that her ability to come up with the words she is trying to say has been affected, so I'm trying to learn when the appropriate time to step in is, and how to reassure her when she gets frustrated.  Her memory, especially short term memory, has also been affected, so I spend a lot of time going over things since her cessation of breathing episode.  These have shown some small incremental improvement since, and will likely be a major focus of Pam's therapy. That evening Pam's condition was upgraded, and she was moved from Intermediate Care to the Neurology ward.  Hillary arrived Monday night from Pittsburgh and stayed at the hospital.

    Tuesday (day 14): Pam had pulled her nasal feeding tube nearly out, so they removed it early in the morning.  The doctor in charge of her care said they were planning to install a stomach feeding tube by about Friday.  I expressed concern at this as I mistakenly thought it was a step up in invasiveness.  Just before her nasal tube was reinstalled they conducted a swallowing test that was video X-rayed.  This showed that her swallow reflex was a bit compromised and that some was going down her trachea.  This can cause choking -- it may be what happened the night she stopped breathing -- or can cause pneumonia.  As a result, the speech therapist also recommended installing a stomach tube.  I found out that a couple (the Spencers) in one of the Springfield congregations of our church -- the Church of Jesus Christ of Latter-day Saints -- had said that Hillary and I could stay at their home at night until Pam was transferred, so I got my things from the nearby hotel we had been staying at. That afternoon I met with a representative of the Shirley Ryan AbilityLab (SRA) rehabilitation hospital in Chicago for about an hour. She indicated that Pam was an excellent candidate for admission and answered a lot of questions about it. She also said that they accepted patients with stomach tubes, but not with nose tubes, so that finalized my change in attitude on this, and Pam was scheduled for its installation on Wednesday morning. Hillary and I went over to the Spencers and met them, and Hillary stayed there and I went back to the hospital.  Pam continued to show some improvement in word usage during the day.

    Wednesday (day 15): Pam had the G tube installed in the morning.  She was sedated for it, and so was pretty quiet all day.  In the evening she was a bit more active, but then and overnight experienced a lot of pain when she needed to be turned in bed to have the bed pads changed. She sang along to some folk and children songs that Hillary played on the guitar for her, but other than that there wasn't much improvement in any areas.  She also couldn't receive any tube nourishment, as they had to wait 24 hours to let things stabilize after the tube installation to avoid vomiting.  However, we did receive word that she had been accepted as a patient at SRA, and had been approved for coverage there by my insurance provider.  So the question began to be when this might occur.  We were told that it could be as early as Friday if things were stable Thursday, particularly with her response to the stomach tube.  I stayed at the Spencers and Hillary stayed at the hospital.

    Thursday (day 16)  Two members of our congregation, Matt and Becky Bean, came over and sang primary hymns to Pam, and she started singing with them.  She was more talkative and was laughing at jokes and groaning at Matt's puns.  They also showed her video clips of the play she had been in last year that Becky had directed, which she enjoyed.  After the Beans left her blood pressure dropped a lot and the nurses started pushing a lot of IV fluids, which brought her blood pressure back up.  That afternoon our stake president and his wife came by and she was alert and engaging in a fair amount of conversation with them, and was showing improvement in coming up with words.  Her catheter was removed to see if she could begin to void on her own. We met with the nurse case manager who was handling arrangements for Pam's transfer via air to Chicago; her doing all of this was invaluable and a huge load off of our minds.  Late that afternoon the doctor came in and approved her being transferred to SRA on Friday.  Two friends from church in Macomb (Karen Thurman and Alysson Bernards) came over to spend the night with Pam to give us both a rest, so Hillary went to the Spencers and I collected all the clothes and dirty clothes and drove home to Macomb, where I spent the night doing laundry, packing, and doing some work related to a special issue of a journal for which I am a co-editor.

    Friday (day 17):    I ran a few early morning errands in Macomb and then drove back to Springfield. Pam's blood pressure dropped again a little bit but rose slowly over the course of the day. Pam was retaining urine, so it was decided that she needed to be re-catherized.  Neither of these disqualified her from being transferred, so I left at about 1:30 to drive to Chicago.  Hillary stayed until Pam had been picked up by the ambulance that took her to the Springfield airport, after which she left for Pittsburgh.  The Spencers had made us both sandwiches, which really helped.  My drive to Chicago was uneventful, other than getting bogged down in more rush hour traffic than I expected, until my GPS directed me off of I-55 just before it turned into Lakeshore Drive which was of course what I needed.  So I found myself driving through -- and under, on Lower Wacker Drive -- downtown Chicago not knowing if I could trust the GPS on my phone.  But eventually I found myself near the right place, right behind an ambulance that I thought might be Mom's.  So I got into the SRA parking garage and up to the visitor registration just as Pam was getting up to the room and checked in.  One of the Angel Flight nurses who accompanied her the entire way said that her blood pressure and other vital signs had been fine the entire trip.  So the rest of Friday was spent getting her situated, with me explaining to Pam several times where we were and why.

    Saturday (day 18): Because she had just arrived she had 3 hours of therapy rather than the normal 1.5 on Saturdays.  The occupational therapist had me give her a shower in a waterproof wheelchair, and she encouragingly was able to do a little of the washing herself and her hair. Then a speech therapist came and did a swallowing evaluation and a cognitive evaluation. Finally, a physical therapist took her into the Walking/Legs Lab and assisted her in walking a distance that far exceeded the therapist's expectations. We talked many times throughout the day, and there continues to be incremental but noticeable progress. After physical therapy I took her down, in her wheelchair, to one of SRA's outside gardens on the 10th floor.  After she got too cool we went back in and found a sunny spot where I read poems about friendship to her.  As I did, I was reminded again and again that she is my best friend, for which I am so grateful.  That night was a bit rough as she had to be catheterized several times to empty her bladder, so as to prevent developing a UTI.  Since they don't want her to have an attached catheter, which dramatically reduces what can be done in therapy, they use single-use catheters.  The problem with these is that a catheter has to be inserted each time. At bedtime last night three attempts had to be made before the catheterization was successful.  So I have been telling her that she needs to do kegel exercises to strengthen the pelvic floor muscle tone.

    Sunday (day 19):  Today I went to a local congregation for sacrament meeting, and then came back and joined Pam at the interdenominational service in the chapel.  Then we went out and sat in the sunshine in the other outside garden, where the attached picture was taken (sorry about poor quality). Then we went back to the 10th Floor Sky Lobby and talked with a nurse who was staffing the Resource Center there.  She was very encouraging and loaned me a book The Brain's Way of Healing by Norman Doidge.  Then we went back up to the 23rd floor where her room is, and sat and talked.  While Pam's short term memory and coming up with the word she is looking for are clearly major problems, I continue to notice small improvements.  Today she asked why she had to have her bladder scanned when she had been doing kegels.  Tonight one of the nurses asked how many children she had and she named all five in quick succession, which she hadn't been able to do before. She has also asked several times when she can have some food, and each time she has been more accepting of the answer; the same has been the case with accepting the need to be catheterized.

    On Monday her evaluation and therapy will begin in real earnest, as her normal weekday team of doctor, nurse, therapists, dietician, and care manager will be in and will be evaluating her and putting together and beginning to implement her rehabilitation plan.  I am so impressed with the facilities and staff here, and am so grateful that Pam was approved to receive care here!

    One of the things that I have done at least once a day is to go through the alphabet with Pam and for each letter tell her something about herself that begins with that letter.  The word I use for D is determination, and when we get there I remind her of how this attribute of hers will be so helpful to her in getting the most benefit from therapy.  She has told me more than once that she will work hard, and I know she will.

    I am so grateful for, and fully acknowledge the power of, your prayers and those of others you have forwarded this information to. Several of you have thanked me for suggesting specific needs that you could make a focus of your prayers, so here are some specific needs that she has. As this next phase in Pam's recovery begins, much of what recovery occurs will depend on Pam putting forth effort, along with the effective application by the SRA staff of their expertise and resources. In the short term, her recovery will be enhanced by full restoration of her swallowing reflex on the one hand and of her bladder function on the other. Something that will take somewhat longer is rebuilding motor control so that she is able to correctly move specific limbs in precise ways; as it is a command to bend, for example, her left leg results in her bending her right arm.  Improvement is occurring but far, far more needs to occur in order to fully restore her mobility and permit her to recover life skills and abilities that brought her joy and made her who she was.  In the long term, the greatest challenge she faces will be in the restoration of her cognitive abilities, especially short term memory, reading abilities, and her ability to clearly express her thoughts. For these cognitive abilities, the need to reestablish, rebuild, and develop new neural pathways is the most critical challenge. Please continue to pray for God to bless her in these ways, and others that he knows she is in need of.

    Pam is getting close to, and in some areas has already exceeded, what I believed to be the minimal characteristics for her to experience a quality of life that she would be content with.  I know realize that she can greatly exceed these minimums, and can recover to a point close to, if not at, where she was before all this.  While the critical recovery that rescued her from death has, through your prayers and God's grace, been realized, please continue to remember her in your thoughts and prayers so she can fully recover in the months and years ahead.  As I have read your letters to her over the past two weeks, I have increasingly realized how much love and service Pam has given to others, and how much she can still give in the future if she is able to recover more of her abilities. She has been touched by your letters, and I will continue to read them to her over the coming months to aid in her rehabilitation.

    From the bottom of my heart, thank you for all you have done, and will continue to do, to help bring about these miracles!

    With love and gratitude,

    Gordon

    ------------------------------
    Gordon Rands
    Western Illinois University
    Macomb IL
    (309) 298-1535
    ------------------------------



  • 4.  RE: Your help needed

    Posted 06-11-2019 05:18
    Colleagues, 
    Here is an update ( M 6/3 - M 6/10, days 20-27) on Pam's condition.  Her progress in recovery continues, but I'm going to switch from a day by day approach to a summary of progress, any setbacks or questions, and areas of need.  Pam has benefitted so tremendously from your message, prayers and good wishes -- and so have I! -- and their continuation is so appreciated!  
    Today was her birthday and, along with lots of good therapy sessions, she got an artfully presented piece of cheesecake with her lunch, received some beautiful flowers, and enjoyed a delicious German Chocolate birthday cake courtesy of a friend of our daughter Julia. She then loved looking at pictures of family members and viewing video birthday wishes, to complement the phone call she received from her sister and brothers Sunday night. It was a good day.  As I've said before, Pam's abilities to be touched by and feel the love of others, and to express love to others, have not been diminished at all.
    Progress: 
    Medical condition: This week Pam regained urinary function so she no longer needs to be catheterized.  She also passed her swallow test, so she is eating three meals a day, which she is really enjoying.  Other than sometimes being a little light on the salt, she says the food is really good.   
    Physical therapy has been going really well.  Pam has been walking a lot, including stairs, sidestepping and walking backward, and walking around obstacles.  She wears a safety belt that whoever is accompanying her gently holds in case she loses her balance, but her balance is generally quite good.  The therapists have commented on what a good arm swing she has as she walks, and how well she follows the path as it turns.  I have been approved to walk with her, including taking her to the bathroom, so we are starting to take walks around the floor she is on.
    Occupational therapy is also going fairly well.  She can basically bathe herself, brush her hair, and do a fair amount of the work in getting her clothes on.  She directed me on separating laundry and helped me fold sheets.  Her apraxia -- a problem of motor control in which she sometimes moves a limb on the opposite side, or a different limb -- is slowly but surely improving. Her bathroom skills are getting better, although she still tends to reach for the faucet rather than the handle when trying to turn the water off and on. Today she began tacking other tasks such as brushing her teeth.
    Speech and language therapy (which includes cognitive skills such as memory, reading, and writing) is going the slowest.  This is apparently typical in an anoxic (oxygen deprivation) brain injury.  We still have to go over where she is and what happened every morning, but she is more quickly correctly choosing such information when presented with categories.  Once she is given this information, we are able to have good conversations about her condition, what she is doing, what is coming up next, etc.  She is increasingly expressing gratitude to me for taking care of her, and yesterday she was extremely touched as I read some of the letters that many of you have sent in with memories about her.  She is increasingly expressing a desire to read and was able to read a chapter heading from The Hobbit the other evening and again today, but she is having difficulty focusing on words even when they are in large font.  Today she expressed a desire to write, so a couple of different times practiced writing some of the letters of the alphabet.  Both times she then just sat and looked at them feeling discouraged, but cheered up as I told her that for her first day of doing so they were looking good and I was encouraged by what I saw.  
    Just a comment here, more about me than Pam: I know that at points in our marriage Pam wondered how I would respond if something happened that left her in need of substantial care.  I understand why she did, as my levels of immaturity and self-centeredness were far too high.  I have been so incredibly grateful to find that I have grown and changed enough (and have been so supported by your thoughts and prayers) that helping care for her has not been difficult.  I am also in awe of the long term care that many of you have quietly provided for years to a loved one, particularly in cases where they have not experienced the improvement and recovery that Pam has.  Thank you for your examples.
    Setbacks/questions:
    This week Pam was moved down to a floor where her heart rate and blood oxygen levels could be continuously monitored, due to concerns about a possible reoccurrence of the racing heartbeat she experienced on day 6 back in Springfield.  She has an appointment with an electrophysiologist (cardiac electrical system specialist) at Northwestern University Memorial Hospital on Wednesday, and they may end up recommending that she have a small defibrillator implanted below her left collarbone.  If so, this will require additional approval from our health insurance provider; it would also have to approve her readmission to Shirley Ryan a couple of days later.
    Thursday night Pam attempted to get out of bed to go to the bathroom unaided and immediately lost her balance and fell.  She was not hurt, but as a consequence, her bed is now surrounded by an externally zipped up mesh bed enclosure.  It looks like it is designed to keep out mosquitoes the size of hummingbirds, so it must have been designed by a Minnesotan.  She will probably have to use this for the remainder of her stay, but it is certainly preferable to wrist restraints.
    Because she is considered at risk of another racing heartbeat, the doctors recommended installing an IV, just in case their was an emergency need for getting medication into a vein.  Pam is notoriously hard to correctly and painlessly "stick", and tends to scratch them out in her sleep, so I was reluctant but agreed.  The first IV clogged after a day.  Two more attempts were painful and unsuccessful, So they put in an "M-line" which goes into a larger vein and has a long catheter in it rather than a short needle, and "lasts for up to 20 days."  It went in OK, but she pulled it out within about 4 hours as she slept, with a fair amount of bleeding.  At that point the doctor agreed that we'd just deal with that if we need to rather than as a precaution.
    Needs:
     
    At this point, Pam's only acute need is for the electrophysiologist to successfully determine if she needs a defibrillator implanted, and if so, to be approved for this and have the procedure successfully carried out.  It is is apparently a relatively safe procedure with a short recovery time, other than pain and soreness when using the left arm for about a week.
    Her other needs all relate to long term recovery of abilities that have been compromised, especially those mentioned above in the speech and cognitive area.   
    With the possible exception of the racing heartbeat/defibrillator implantation, Pam is well out of danger and is now in the long slow process of recovery.  Recovering some of her abilities, such as playing guitar and piano, regaining her excellent skills as a seamstress, and driving will likely take many years, if she regains them at all. 
    But some people that I know, and others that you likely know, are currently experiencing more serious threats than Pam.  So while I sincerely hope that you will continue to remember Pam and pray for her recovery in different areas, please be sure to remember others around you who are also in need, so that they can experience miracles in their lives as you have helped Pam experience miracles in hers!
    With love and thanks to all,
    Gordon


    ------------------------------
    Gordon Rands
    Western Illinois University
    Macomb IL
    (309) 298-1535
    ------------------------------



  • 5.  RE: Your help needed

    Posted 06-24-2019 06:24
    Dear Colleagues, 
    Sorry not to have sent out an update about Pam for a while, for those of you who are interested.  We had three of our kids and their families here over the past weekend, plus some appointments and lots of insurance and procedural issues to deal with.  At this point, many things are a lot clearer.  This update covers T 6/11 - F 6/21 (days 28-38).
    Jennie's, Hillary's and Geoff's families all came and spent parts of last Thursday - Tuesday with us.  The grandchildren didn't know what to expect, and while Pam is obviously quite different in some actions and mannerisms that before this happened, they and Pam enjoyed being together.  Her room was very crowded, and she had a big smile on her face the whole time.  Fortunately, she wasn't scheduled for any therapy on Saturday or Sunday to take her away from time with family.
    Progress:
    Medical condition: Aside from the past three days, her medical condition has been good.  She has been suffering from gas, nausea, and stomach pain for the past three days, primarily in the morning.  She has had X-rays and a CT scan, which have ruled out anything of major concern.  Unfortunately, that doesn't make the pain any less, but at least now we don't have to be worried about something major.  Pam also had her echocardiogram so she is now ready to have the implantable cardioveter-defibrillator (ICD) procedure next Wednesday, June 25th.
    All of Pam's therapists say that she is making substantial progress.  Physical therapy has still been going really well, other than having missed some days due to appointments or sickness.  Her walking and stair climbing continue to improve, as does her balance.  At this point, she easily stands while showering and doesn't even hold the grab bars.
    Speech and language therapy has been having some major impacts, especially regarding her memory.   While each morning we still review where she is and what happened, at this point she usually remembers the various answers without any hints or categories to choose from.   Our conversations about her condition, what she is doing, what is coming up next, etc. continue to improve, and we have added many other topics. However, I am sometimes surprised to discover that she doesn't remember something that one would think she would, like the fact we are buying a house in Oregon, or what our house in Macomb looks like.  She expresses thanks to me many times each day to me and one day I read all of the letters and cards that have been sent, and many of the emails and Facebook posts, and she was very, very touched, saying repeatedly how kind they were.  She has made major strides in being able to come up with the words she is looking for to express a thought.  Recently she has also made a lot of progress in reading.  One day she read three different poems aloud, and yesterday she read a page from a non-fiction book.   While they may not seem like much, they are such a big jump from being able to read two or three words.  
    Occupational therapy continues to go over many of the same things, and improvement in this area, while real, has been slower.  Getting dressed has improved more regarding pants and socks than it has regarding shirts or shoes, but this is apparently normal.  She also doesn't seem to be mixing up the left side for right or arms for legs anymore.  She is also brushing her teeth well now and squeezing out toothpaste, body wash, shampoo and conditioner on her own. There is some overlap between occupational and speech (cognitive) therapy, which is referred to as functional cognition.  So the occupational therapists are also starting to help her work on typing now, as well as writing the alphabet and putting family members' names to their pictures.  These last two have been a source of frustration for Pam.  However, while I have been writing this she has been writing letters to members of our family, and while there are lots of misspellings and some indecipherable words, by and large they can be followed and make sense!  Even though it looks like something a second grader might do, this is an unexpectedly sudden piece of progress!  One day the occupational therapists even brought in a small music keyboard and she played some simple songs!  These sudden improvements strengthen my hope and faith that she will eventually regain most or all of her important skills and abilities.  
    Setbacks/questions:
    The only real setbacks have been the three days of stomach pain, but, hopefully, those are past now.  Beyond this most of the questions have related to insurance company decisions.  After a lot of uncertainty, our insurance approved having the defibrillator implanted by doctors at Northwestern.  Today I learned that there is a reasonable chance that it will also approve Pam doing Day Rehab (an intensive outpatient status of 3 days a week) at a Shirley Ryan facility, rather than being limited to someplace that is "in-network" in central Illinois that doesn't have the specialized expertise that exists here.
    As a result, Pam's inpatient therapy here will probably end next Monday, June 24, with implantation of the defibrillator on Tuesday and discharge on Wednesday or first thing Thursday.  We will then return home for the first time (for her) in over six weeks.  Depending on what the insurance company decides about Day Rehab, and when, we will then start coming up to a Shirley Ryan rehabilitation facility in the western Chicago suburbs for 3-4 days of therapy every week. After 4-6 weeks of this she will then go to a less intensive schedule of 1 or 2 days of outpatient rehab a week.
    Needs:
    Pam's most immediate needs are for the ICD surgery to go well on Wednesday, for her to be approved for Day Rehab at a Shirley Ryan facility, for us to find someplace inexpensive or free to stay for that, and for us to adjust well to being home again.  That will include adjusting and/or relearning some routines, possibly making some physical modifications such as grab bars in the bathrooms, and me taking on the primary share of most household tasks, at least for a while.  I also need to better learn and apply some of the therapy techniques that I should be practicing with Pam at home.
    On a long term basis, her needs are to continue to gradually improve in all of the areas that she has been making progress in, as well as some others we haven't yet tackled (e.g., sewing).
    Once again, I want to express our gratitude for your kindness in keeping Pam (and me) in your thoughts and prayers.  I know that the tremendous progress she has made in her recovery from those early nearly hopeless days of the first week is primarily due to God honoring the thoughts and prayers that you and so many others offered on Pam's behalf.  Regardless of the final extent to which Pam regains all of her abilities, I have been an eyewitness to miracles that you have helped make possible.  I will always be grateful to you, and to our Father in Heaven!
    Gordon


    ------------------------------
    Gordon Rands
    Western Illinois University
    Macomb IL
    (309) 298-1535
    ------------------------------



  • 6.  RE: Your help needed

    Posted 08-02-2019 17:13
    Colleagues,

    It's been over five weeks since my last update; I didn't think I had much time while Pam was in the rehabilitation hospital, but now I appreciate how much I really had!  Pam was released from Shirley Ryan as an inpatient on June 25th and transferred to Northwestern University Memorial Hospital where she had an ICD (implantable cardioverter-defibrilator, which also has a pacemaker function if needed) implanted that afternoon.  After an overnight stay she was discharged to home on June 26th, 43 days after breathing cessation and resulting brain injury.  Since then she has continued to make progress, but as I indicated in my last update, we are now in the portion of her recovery that is more gradual.  
    The weeks after discharge have been dominated by recovery from Pam's surgeries, getting other medical appointments scheduled, getting rehab approved and started, and simply getting used to being home again and relearning past routines.
    Progress:
    All the doctors have said her ICD incision has healed perfectly, the device's test numbers are good, and the monitor that transmits the numbers to the doctors is set up and working.  Pam was told to not lift her left arm over her head and not lift over 10 pounds with it for six weeks, but at the same time to still use her arm so that she didn't get a "frozen shoulder."  So, of course, we were overprotective and her shoulder began to freeze up.  She is now going to physical therapy for that in Macomb, and it seems like we caught it in time that it will recover pretty quickly.  Pam's feeding tube was supposed to be removed on July 11th, but it came out on its own about 4 days early.
    I've learned that getting referrals to and scheduling appointments with doctors can be amazingly time-consuming.  A heavy-duty calendar that our daughter Katie creates every year has become an indispensable companion.  I counted it a major accomplishment when I was able to schedule two appointments with specialists in Springfield two hours apart on the same day.  Getting insurance company approval for day rehabilitation (3 hours a day, 2-3 days a week) at another Shirley Ryan facility in the southwest Chicago suburbs has been a major frustration because SRA is out of network.  Ideally, day rehab would have begun within a week of discharge.  It actually only began last week, four weeks after discharge, due to approval time, delays due to 4th of July holiday schedules, miscommunication from the insurance company about what the approval meant (it was actually only for an evaluation to determine how much therapy was needed), conducting the evaluation and getting another round of approvals.  Pam began to get discouraged and question whether day rehab was even worthwhile, but after the first week, she realizes that it is.  The insurance company has approved speech (cognitive), occupational and physical therapy sessions between now and mid-October, but only approves enough sessions for about 2-3 weeks at a time, so every two weeks the therapy team at Shirley Ryan will need to write a progress report and request approval for additional sessions.  As frustrating as interacting with the insurance company has been, I feel so blessed to have the insurance that we do;  the bill for her hospitalization in Springfield alone was over $160,000, and we will only have to pay $350 of that.  I realize that people without insurance would either not have received the care -- and therefore the recovery -- that Pam has, or would have done so only at the expense of their financial future.
    Getting used to where things are in our house has taken a little while, but hasn't posed too much difficulty. Pam can get our breakfast cereal ready including cutting up fruit for it.  She also is washing dishes and wiping counters and the table, and unloading parts of the dishwasher.  She is folding laundry, but not up to her prior standards. She is also increasingly remembering and being able to carry out many parts of her personal care routines, but I'm still doing her hair. (I have gained new admiration and respect for all that caring for long hair entails!)  She has also needed to get used to where things are in the house we are staying in while attending therapy.  It is the home of members of our church who are friends of a former member of our congregation.  They (the Whittingtons) have been incredibly gracious to open their home to us, even when they are out of town.  We are so grateful for the amount of community that exists in the Church of Jesus Christ of Latter-day Saints that makes such things possible!
    Pam has forgotten how to read music, but has been trying to figure it out with children's church songs at the piano.  She also has been doing a lot of "doodling" at the piano, in which she simply plays what she feels for 4-5 minutes until she eventually resolves a piece.  Each one is different and they often sound complex, at least to my untrained ear.  I'm optimistic that with the help of some of her friends at church she will be able to relearn how to read music and to play written compositions again.
    Her handwriting has also improved dramatically from the early days, to the point that her printing and writing are once again more legible than mine!  She hasn't tried typing or using the internet much at all, and she has only recently begun to attempt to text and make calls on her own.
    Pam has been reading frequently, but often finds herself getting lost and repeating paragraphs or pages.  She also has trouble remembering what she has read.  Our daughter Julia and her family were here this weekend and Pam spent a lot of time reading Dr. Seuss books to grandchildren.  Even though it was somewhat halting, and the older grandchildren sometimes corrected her, I saw it as a sign of real progress.
    Finally, both her memory and her physical affect (posture, facial expressions, etc.) have improved somewhat as well, but again, a lot of recovery remains to occur.
    Overall, as I watched her interact with grandchildren this weekend, I was reminded of something I wrote in my very first message to everyone back on May 18th as I was preparing to give Pam a blessing: "I - and I believe she - would be content if she could think clearly, communicate (hopefully verbally), feel positive emotions and enjoyment, smile, and touch, hold, and interact with her grandchildren so that they know that she loves them.  Of course, I hope for so much more, but if she could recover to that extent, it would be enough."  This, along with so much more, have been fulfilled, and the look of joy on Pam's face as she spent time with our grandchildren was so incredibly fulfilling!  She, and our entire family, have been so blessed!
    Setbacks/questions:
    Other than the long delay in getting day rehab going, and the frustrations associated with that, there have been only a few minor setbacks.  Pam has slipped and fallen twice after getting out of bed to go to the bathroom, once on about her second night home and then again on Friday.  Both times she fell onto her bottom with no damage done.  We had thought a little initially about a bed alarm mat and may need to do so again.
    She has also occasionally (perhaps once or twice a week) gotten discouraged about the skills she has lost and has asked what her purpose for still being here is.  This was especially the case after the first time she tried attending her humanitarian sewing group and found that the most she could do, even with a lot of assistance, was to pick out a seam. (She has since found that she remembers how to use her serger, and I'm fairly optimistic that her sewing skills will eventually be remembered or relearned).  She so wants to be of service, to her family and others, and feelings that she can't be of service are the most likely to cause discouragement.  We are starting to resume visiting members of our congregation whom we provide watchcare for, and I believe this, along with the progress she is making in other areas, will help dissipate these feelings of discouragement.
    Needs:
    Pam's biggest needs continue to be in the areas of memory and functional cognition (translating intention into effective action). For example, she still needs help getting dressed each day, both in choosing what to wear and in getting it on.  As her arm heals and the extension and weight restrictions are lifted on August 6th she will hopefully be better able to dress herself.  At that point we will hopefully be able to start doing yoga again.  She also needs to remember to do both physical and cognitive exercises that her therapists are recommending.  And if she forgets, I need to remember to remind her.
    Another significant need is for me to receive final approval to transform all my classes from in-class to hybrid (a combination of in-class and online), as my department chair recommended.  This would allow me to be in the office only on Thursdays to teach and a lesser amount of time on Friday for office hours.  The plan will be for Pam to attend her church sewing group on Thursday mornings and then for her to spend the afternoon with different members of our congregation's Relief Society, the church women's organization. They will hopefully be able to provide her some additional "informal" therapy, such as help with reading music, playing piano, reading, typing, and sewing, in addition to simply talking. Hopefully, she will be able to come into the university with me on Fridays, and I will simply meet with students in an adjacent room when they do come in. I am hopeful that with such arrangements I will be able to efficiently and effectively manage my teaching responsibilities this fall.  I am hopeful that if I can, with ongoing improvement in the meantime, that either by winter semester or at least by next fall Pam will be able to care for herself during the day.  If so I can resume a normal teaching schedule and teach for an additional three years so that I can retire a few months after turning 70.
    The third area of need is for Pam to continue to receive approvals for additional rounds of therapy at Shirley Ryan until we reach a point that therapy there will be no more effective than therapy locally.  When that point will come I have no idea, but I hope that her therapy team can recognize it when it arrives and that the insurance company assessment of it is accurate rather than premature.
    Finally, Pam needs for the neural pathways in her brain that were damaged to continue to be restored, and for new brain cells to continue to develop and grow in order to further the reestablishment of abilities and skills that have been lost.
    As always, thank you so much for the prayers and good wishes that you have offered for Pam!  I know, without a doubt, that these have played a huge role in her recovery.  While I sometimes feel guilty hoping that you will continue to keep Pam in your thoughts and prayers given how much she has already recovered, I have hopes that she can eventually recover nearly all the skills, abilities, and attributes that have made her such a special person, and know that your continued thoughts and prayers will help that come to pass.
    I hope that all of you are doing well, and are receiving any help and blessings that you may need in your own lives.  Pam and I look forward to seeing many of you in Boston!

    Gordon


    ------------------------------
    Gordon Rands
    Western Illinois University
    Macomb IL
    (309) 298-1535
    ------------------------------