Praise God for His continued goodness!
Today, I stood by my husband, Pastor Esposito, in what I call our "secret garden." Through the nursing center activity room is a patio with a fountain, trees, plants, birds, etc. I asked him the other day, "Isn't it funny the way we had a life of rushing to and fro, filled with people and now here we are in our own little secret garden? Just you and me?" It is a very peaceful place to be when we stop to appreciate it. This is the place where I take him just about every day, as it is the least used of spaces at Huntington Valley Healthcare Center. (Sometimes folks come to see us and hope the wal.) But today, I was going through our daily routine of chair exercises… sit forward and back using the PVC pipe, tilt at the waste right then left, play tug of war with a rubber jump rope, grasp and release the ball, wipe the table with a paper towel, and so forth. It takes from morning until lunch time with a couple of ten minute naps for him in between. Recently he has been showing some improvement with his weaker right hand. As I asked him to wipe the table toward his stomach, he did very well. My mind flashed back coming up on two years when all we wanted was to see a finger move, or a toe wiggle. With tears I asked him, "Do you realize what a miracle it is that you moved your hand like that?" God has brought us so very far, and I realize that without Him all our effort would be in vain.
I have wanted to write an update the last couple weeks to share this exciting blessing. Recently, I took Pastor out on the front sidewalk under a tree because day every area was full of patients and family members, and I am always looking for a quiet spot. I was having a sincere talk with him, and he was listening and looking at me intently. I couldn't tell you the topic, as I think the excitement caused me to forget… but I said to him, "AMEN?" ….as if to ask him, "don't you agree?" And with what I call a Donald Duck voice he responded, "Amen." Then I said, "That was so good! Can you say 'Mary' with voice like that too?" And he did. Then I asked him if I could call the children and let him say, "Hi" to them. I first called Sarah at the church office and told her that Daddy wanted to tell her something, and I asked him to say "Hi, Sarah" with voice; and he did. She said that Joanna was there too, and he said, "Hi, Jojo." Then they said my daughter-in-law was there too, and he said, "Hi, Cindy." Then my husband's previous secretary Jaz wanted a "Hi" too, so he said, "Hi, Jaz." I called the others, and for each he said "Hi" with their names. (I was unable to reach the two younger boys at the time.) When I called my daughter-in-law Jennifer, and after he'd said, "Hi, Jen" and "Hi, Mary" to my granddaughter, Jen said, "My parents are here too." Both of her parents were on the phone screen via FaceTime and I asked, "Can you say 'Hi, Jane'" to which he replied, "Hi Jane and Robert." That was really neat. We sort of wore him out saying hi to everyone, but we all were very excited. Then he mostly slept for the next several days. Every step of progress wears him out. I didn't ask him for a while, but now am back to practicing using the voice. Vowels are supposed to be easier, so I will tell him to take a deep breath, open his mouth, and repeat the long A sound after me, then E, then I, then O, then U. A couple of days ago, I cheated and had him say A, E, I, then I said, "love", U. He didn't say it, but just looked at me. Then the next round, after "I," he didn't speak but lipped, "love U." He still has his sense of humor! He often smiles big when our staff men tell him things that are funny.
Thank you for praying for all the progress God has brought. We appreciate it so much, and it encourages our hearts. Recently someone came to visit Pastor whom we hadn't seen in a long time as he travels most of the time as a truck driver. He said that somewhere along the way he got the idea to pray for Pastor every time he finds a penny. He said he finds lots of pennies.
Please pray for Pastor:
Please pray for wisdom for the family in various decisions and for God's leading and direction in all areas. Never before did this poem I'd see on journals, etc. make sense as it has since October 3, 2013:
God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
…Trusting that He will make all things right
If I surrender to His Will…
-- Reinhold Niebuhr
We are so grateful and encouraged by the continued prayers of many folks. My daughter Susanna sent me a picture of a handwritten prayer list by a young lady in Cambodia, and at the top it said, "Pastor Joe." (My husband used to tell the Khmer folks when we'd visit in the early days that his name was Joe, and he'd say, the alphabet in the Khmer language until he got to the 8th letter I think, which is pronounced "Joe." Esposito was way too difficult.) How encouraging this was to us!
We have continued to do with Pastor the various exercises mentioned in the last update. He is doing much better with each of them. Please keep praying for increased strength and coordination. Sometimes when he has the energy, and I ask him to use a wiping motion on the table with his hand and arm on a towel, he does it quickly as if to say, "Mary I got this already." His right hand is improving but is still very slow; but he does it!
We had been practicing holding a pen, and Pastor would hold it and move it a bit. Recently we were able to have a notary come and ask him if he agreed to give his wife power of attorney over financial matters. (Without this we have had some road blocks in different areas.) He gave her the thumbs up, and surprised us at the "signature" he wrote. It wasn't clear that it was his signature, but he was clearly trying to write a signature on the line. It wasn't just a mark, though a mark would have been legally sufficient. So that was neat and we are very thankful! It made us laugh, in a fun way, because we only expected a small mark. He did it as if really trying to write his name.
I am not sure if I mentioned it but when Pastor is in the wheel chair, we use a PVC pipe and get him to hold tightly (he does very well) and I help pull him forward so that he is sitting upright. Recently, I have asked him to lean his waist right and left, and he is able to do this on his own. It's exciting to see some trunk control and to continue to see his understanding of what we are asking him to do. He also does very well with "tug of war" using a rubber jump rope, especially when he uses both hands together. He can almost hold on against me if I hold one-handed and he two-handed.
Something else I have begun doing is asking Pastor questions with two choices for answers. For example, he often he takes a nap after the whole ordeal of getting dressed and Hoyer lifted into the chair. One day I asked him, "Do you want to work (exercises, etc.) or do you want a nap first?" "Can you answer with your mouth – nap or work?" He said, "nap", not with voice, but with breath. Later I asked him, "Sermon (listen to a sermon) or work". He chose work. Then later I asked, "sermon or nap" and he said, "sermon." Now there are times when he just looks tiredly, and doesn't respond at all, but it's exciting to see him be able to respond more little by little, and we praise the Lord for this. He also whispered to me clearly a need the other day using a complete sentence. I was so excited and sad at the same time….excited he was communicating and I understanding, but I wept because I felt so helpless and unable to help him in what he was saying. Today he tried a phrase about 8 times, and I still didn't get it. Please pray for his clarity, and my understanding.
I spent a little time talking to one of the respiratory therapists the other day about capping the trach. One thing he mentioned is that my husband doesn't have the capability to cough or clear his throat intentionally, which really should be a sign of being really ready. Please pray that he will increase in the ability to do so. I don't know if it's brain capacity, or discomfort and not wanting to do so, or a lack of physical ability to do so. He does cough when something gets into the air way – but it's not intentional but reflexive. We have done some capping trials. Two days ago he did 15 minutes, though I cheated for him and pulled it off momentarily to let him grasp an easier breath. Yesterday, he was struggling too much, so we stopped. Today his oxygen tank ran out for a while (my fault for not asking for a new one) and his oxygen level and heart rate were a bit too low, so I didn't ask for capping.
There are two different things we are checking into and about which we are praying. Please pray with us for God's wisdom. I only want what God wants and what will be best for my husband's recovery. He has continued to improve little by little under the present circumstances, so I don't want to make any rash decisions in impatience.
The first consideration is the potential of moving my husband to a place closer to home. (The facility I am considering doesn't presently have availability, but I check it out once in a while. It is on the block of our church.) Some of the benefits would be being closer to home, nearer to church and family, and MAYBE potential to take him in his wheel chair home or to church for short times. There are also "cons" to the change which I often weigh in my mind and about which we are praying. The second is that – the possibility of being able to take Pastor out of the facility on occasion – usually they give patients up to 4 hour passes….but not so often in the subacute department. I have asked for the doctor's consult…and will also see the physiatrist later this month and ask her opinion as well. In the mean time, I would have to have my own mode of transporting him by wheel chair, requiring a vehicle with electrical power (unless we just want to take the risk of not being able to suction during transport in case needed.) I have been told that wheelchair transport companies won't take the liability of trach patients, and of course I wouldn't want to transport him by ambulance on a gurney because of very high cost and impracticality. I would also want/need some medical equipment available at home and some handicapped improvements if I took him that direction to Long Beach occasionally.
We were so thankful Bro. Laudio and Mrs. Carina Flores came to visit Pastor on 4th of July. Carina sang some of Pastor's favorite songs. One song she sang was, "God's Been Good in My Life." When she came to the place where the song is written, "Though I've had my share of hard times, I wouldn't change them if I could for through it all, God's been good," Pastor lifted his hand way up right there, as in, an obvious "AMEN." That meant a lot to me. I have often wondered what he must be thinking, a pastor of 25 years, confined to a hospital bed unable to communicate. If I know my husband, He's enjoying sweet fellowship with God, praying for the rest of us to continue to faithfully trust the Lord, and waiting patiently to see what the future holds. But sometimes when I have had my own moments of struggle, I wonder if he has those moments as well.
Many times I have heard this same song sung, but often the singers have changed the words to sing, "though I've had my share of hard times, by my side He's always stood." (Which IS true, and much easier to sing!) I thought a lot about this. Not long ago, I stood and wept with a young college student whose mom had just gone to heaven what we from our earthly perspective would call prematurely. She told me she was singing that song. She said, "But Mrs. Mary, I couldn't sing that part, 'I wouldn't change them if I could'". I told her, "Not yet – but that's ok." I do believe God wants to lead us to the place where we can sing the song as written, though. But it's a process getting there. Time passes and if we will open our eyes wide enough, we can begin to see some blessings through the tears. If we'll open our heart, we'll get to know our God better; and through the pain we will be able to say those words and mean them. I can't say I always want to sing the words as written, but I hope and pray that I will more and more. I suppose I am not talking about the song "God's Been Good," but the song of my life – to desire it as God has written it, without wishing He'd change His plan. A Scripture verse I have meditated much on recently is Romans 8:18, "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." I have repeated in my mind "not worthy to be compared." My "light affliction which is but for a moment" is not worthy to be compared to what He did for me or what He wants to do in or through me.
Thank you so much once again for your care and prayer.
Thank you once again for praying so long and so faithfully for Pastor Esposito, our church, and our family. As I have said many times, it means more to us than you could ever know.
We had an eventful May. It was my husband's and my 29th anniversary. I reached my 50th birthday. Our daughter Joanna graduated from high school on the 29th. The graduation was a bit emotional; while at the same time helped us to thank God once again for the trial. Joanna did an awesome job giving the salutatorian speech, and I saw such maturity and growth in her. We used the phone to allow her to address her dad as he watched the graduation. Many tears… but through the tears I praise God for the strength and faith He is growing in our children's lives because of the trial. It was one of those glimpses at God's purpose I mentioned in the last update. (You can see her speech here.).
Since the last prayer update, Pastor had both physical and occupational therapy, for now both have ended. Praise the Lord for allowing him to have those weeks of therapy. He has made some progress through it; and has had the opportunity to demonstrate some abilities we may not have thought of working on. It has also helped to loosen him up some more, enabling better movement. I requested prayer that the standing frame would continue, and thankfully the order has been written for the standing frame twice weekly. Thank you for praying. I took lots of notes from therapy and got lots of new ideas even watching others there, and have many new ways to work with Pastor. We also were given printouts including new exercises to work on various areas as well. Here are some examples of things on which we've worked:
• Rolling a ball back and forth on the table using either hand
• Tapping on the matching card with his index finger
• Moving arms/hands back and forth in a wiping motion on the table
• Standing and exercising head and neck – moving them at request
• Pulling pegs out from a peg board
• Filling in a circle with a marker, trying to write (he switched the pen from the left stronger hand to his right hand on his own.)
• Many new exercises like turning the hand at the wrist in rotating motion, etc. (for the first time he reached up with a tissue to wipe his own mouth during one of the sessions)
• Many more, all of which we will continue to do on our own. Then later they will check his progress on all of these.
Each and every task is very slow and obviously takes a lot of thought and effort. Many times there is a long delay, then a response. Often he does what is requested once or twice then stops. Pray for Pastor's strength and energy. Yesterday, it was neat just that he picked up his right arm to try to cover a sneeze. For some time he has been doing so with his left arm. Today he did the wiping motion much better with the right arm. Sometimes (without specific permission) we walk Pastor to a nearby pharmacy. Sunday I did so, and it was the first time that he seemed to be alert enough or have movement enough to sort of look around a bit on his own instead of me getting his attention and asking him to look at this or that.
Praise the Lord for continued improvement—step by step, each of which is a big miracle in itself. Please keep praying God will wake up what needs to be awakened, and connect what needs to be connected between his body and brain. We still need a miracle from the Great Physician. Also, please pray again for the capping and eventual removal of the trach. I haven't really pushed for it since so much effort was going into therapy. Most likely it will be done when I personally ask for it to be done. Now that therapy has ended, and the schedule is more in my hands. I plan to ask daily after he's back in bed from the chair, and done with most of the various new exercises and activities. I know both will tire him greatly. Please pray that he adjusts quickly to capping and he won't be too stressed, that the muscles needed to draw in the air through his mouth will gain strength to work again, and that the brain will tell them to do so.
This morning it was very neat that Pastor was trying to speak with his voice again. It was sad though that he's trying so hard, and I am not getting it. I called the RT in and he said it again several times, but we couldn't understand. "I want…", but we couldn't get the last word. Please pray he keeps trying without being discouraged, and that we can get what he wants to say. And of course pray for his strength and ability to speak more forcefully and distinctly.
Thank you once again.
The Esposito Family
NEW PRAISE REPORTS AND PRAYER REQUESTS. Recently, we had a care plan meeting at the nursing center with social services department from the facility, the head of nursing, one of the respiratory therapists, the pulmonologist, who also is a general doctor, and me. This meeting is a review of all of his recent health records, medications, etc. and an opportunity to share concerns or ask questions. I am going take some time to give some details from the meeting, since many folks ask related questions – so if you prefer to skip to the brief praise/prayer requests at the end of the update, please feel free to do so.
I requested the anti-seizure medication to be reduced to what it was prior to his being ill a couple weeks ago and having had what potentially was a seizure. The doctor is not comfortable with reducing it for now, so it will stay as is. He did tell me that it's the most mild of seizure medications, and that it has very few side effects and should not affect alertness. He said if I feel it does to bring it back up. But, he's actually been more alert recently.
We talked about potentially giving him some herbal supplements for the endocrine system. A nutritionist recommended it, and coincidentally I attended a brain injury conference session on the same topic (from a medicinal, not herbal perspective). The point was that following brain injury, most often there are deficiencies of the hormones produced by various parts of the endocrine system. Theoretically, if these could be detected and corrected it should improve function in areas controlled by these. The doctor said that he is not comfortable with the herbal supplements. He said that there is no way to measure how much you are administering, nor to know if a complication arises (seizure for instance) whether it is from the particular herbal remedy (which he did say act as drugs) because it's not testable. He said at least he can test blood levels for what he is presently giving him and adjust as needed. What he did say is that he is very willing to test for these deficiencies and try correct them with standard medicine.
We talked with the doctor about a "capping" trial. (This is removing the trach at the outer neck, and putting a red cap on the opening.) He approved, and said we are in the best place to try this. Capping causes the patient to breathe both in and out the mouth. (Pastor hasn't drawn breath in through his mouth in 19 months.) Then the RT's place oxygen in the nose and monitor oxygen level and heart rate. I'd had the discussion a few days earlier with other staff. The discussion was very round about, and I had really struggled with it that day. At first the conversation was that typically they don't experiment – they do it when they feel the patient is ready and they do a three day trial and then remove the trach. They also don't usually do it for patients who still are suctioned (Pastor is about three times per day they said – though maybe once a day or 3 times a week I might ask for it during the day). They also said that he still has secretions. I asked why – and they said because the trach is a foreign object. So it's really a cycle of the trach producing it, causing suctioning, and the danger of those secretions causing pneumonia or air blockage in a patient whose muscles aren't yet strong enough if the trach isn't there to suction. Then in the middle of the conversation, they said that maybe it can't hurt anything to try and if he doesn't do well they just stop. I asked if they could tell me specifically that they think he's ready, not just it can't hurt to try and that I don't want them to do it only because they think I want it. I went away to think and pray for a bit and had decided not to. When I returned, they enthusiastically agreed that we should try it and convinced me to try. He handled about 20 minutes until his heart rate went up too much. They felt that was a really good first try. They said some patients are obviously unable to handle it right away. When an RT tried it a couple days later, it only lasted a few minutes and he said, "We'll try again." To describe how it looks, it's like he's fighting for air under water. He looks so distressed in his eyes, and he's breathing fast and hard. It's pretty frightening—to him, and to me! But the positive is that his oxygen level stayed good. The Speech therapist came in and said that the muscles in the throat required to breathe like that just don't have strength after all this time of unuse (our prayer is that this will help build those muscles). What the doctor said is that we can just try once or twice a day and gradually work up to it. I appreciate this, as it's not standard but they're willing to do it. That's what we did with the PMV valve, and gradually he has come to where he wears it almost all day.
I asked in the meeting what the requirements are to qualify for therapy again. (The therapy that I've referred to in our recent updates is of a different type, and paid for out of pocket.) They said that it is evaluated regularly, and requires improvement (the head of therapy says "functional improvement"). So I read to them the following list of things my husband can do.
• Turn and hold up his head
• Move any finger on either hand at request
• Move his left leg and arm at will
• Is beginning to move his right side more
• Respond yes or no by a nod or shake, thumbs up, or blinks
• Recognize and distinguish letters
• Potentially read – as his eyes go back and forth at the Scripture placed before him
• Laughs appropriately in conversation
• Can squeeze a ball in both hands, wave, try to shake hands
• Hold tightly to a PVC pipe I brought and hold and pull some
• Help with his exercises sometimes
• Bend his arm, open and close both hands at request, move his wrists as asked
• Push back or pull in
• Can move his tongue to the left or right and open and close his mouth intentionally
• He can chew the tooth swab when asked on either side, and swallow
• Blow the party toy
• Lip words
• He tries to get voice out
So the doctor ordered a re-evaluation with physical therapy, occupational therapy, and speech therapy. The head of physical therapy saw us outside and asked my husband to do this and that and said, "We'll start tomorrow." The speech therapist came in and said it would be more profitable for her to come after doing the capping for a while. The occupational therapist saw him the next day. It was neat. He tried to clap his hands, wipe the table (and that was using his right arm – though he could pull in but not out), and he brought a cloth all the way to his mouth, which was a first without help. They experimented with a pen in his hand, and it seemed he was trying to grasp and move it. They stood him up in the standing frame as well. Our hope is that though therapy typically lasts only 10 days, he will be allowed to continue to stand with the CNA program 2-3 times per week.
Thank you for all of your prayer for standing by us both our faithful people of Pacific Baptist Church, and those who keep updated via this website or posts that others spread around by other means. It has meant the world to us.
I thought that I'd give a quick update for the past week. The neuro-muscular therapist came four days this week. I was extremely encouraged at my husband's alertness and response. He was very "with her" as she asked him to participate in many ways. One way that was encouraging to me was that she asked him to try to shift his weight on the left side where he sat, and it was obvious that he tried. To me this said that he has feeling and the beginning of some control in the trunk of his body. Also, when I took him inside in the chair following the therapy on Friday, I took off the arm of his wheel chair to use as a "rail" and asked him to hold on with both hands (I helped put his hands on) and I told him to help me pull him up into a sitting up position. He held tightly as I pulled and he did sit up on the edge of the wheelchair, not letting go. I would have expected the right hand at least to slip off, but he held on and we did it several times in a row. Another positive was that past times she came, my husband was so exhausted that he'd mostly sleep the rest of the day. This week, he did sleep some; but also had much awake time where we were able to do other things with him still.
Also, I wanted to share just a funny story. One day this past week after I'd just shaved Pastor. I told him, "You look so good! I need to bring a mirror so you can see yourself. People mean it when they say you look younger. On the other hand, I am turning 50 this week! And I am sure looking like it, don't you think?" To which he nicely shook his head no slowly back and forth about 3-4 times. And I laughed and told him he's so nice to me that that was a nice gift!
Thank you for your continued prayer that means so much to us.
It has been a month since the last update. The first couple of the weeks were very uneventful. In fact I must admit I was tempted to be a bit discouraged. I was asked about updates, but didn't feel that I had anything new to report. (Maybe the strong emotions of a son getting married and a daughter going to the mission field, though both good emotions, made my husband need a couple weeks of rest.) Anyway, I was encouraged by a CD that one of our families gave me by the RU Joybell Singers. One song was especially encouraging, "Hold On." One verse reads, "Hold on through the dark times, hold on though the way seems too long. My grace is sufficient for thee…" But what was more encouraging about the CD was that most of the songs sung on the CD refocused my attention on God's goodness and faithfulness, and all He has done for me. I was reminded that God truly has been very good to me.
Now over the last couple weeks, very much has happened. Let me share some of these steps:
Though we do many things to try to "help" Pastor improve, we know that he is in God's hands, and we ask God for His will. We know that any steps forward are from the hand of God, giving him the capability of taking the steps, so we PRAISE HIM for all of these and continue to ask for a miracle.
Thank you so much for praying long, and for continuing to read our updates. You are a blessing to us!
Pastor's family would love to know if you're praying! Your name or e-mail will not be added to any ministry mailing list. This is not a fundraiser. This is simply to let the Espositos know you are standing with them in prayer.