Thank you so very much for your continued prayer! Please forgive me for waiting so long to update the site. There are a lot of blessings to share, and for which to praise the Lord. I will include prayer requests in each point.
• All paperwork has been turned in for the outpatient brain injury rehab. I received acknowledgement but not acceptance yet. Please pray for God to make going to this brain injury rehab possible.
• I can't remember if I mentioned hives and swelling, his hives went on for three months covering most of his body; and then the swelling of his lips and face began. The skin treatment nurse had tried many treatments to no avail. A doctor couldn't be found by the facility, so I found an allergy specialist up the road and made a cash payment appointment and pushed him there one drizzly day. Several good things came of this. Two medications were removed, and we began to decrease the tube feeding as my husband has gained a lot of weight. He began a daily very mild antihistamine for a three-month trial. Many labs were done. Auto immune diseases and the like were ruled out. Though no conclusions were found; Praise the Lord he's hive free! Pray that the hives stay away.
• For a few weeks, we stopped all juice and food as we experimented with the hives. We've resumed both. Please pray for his swallow muscles to get stronger, so he's not so tired by eating and is able to eat more in quantity and eventually more than puree.
• Capping is in full force hopefully moving toward the eventual goal of removing the trach. This is a really big step. Praise the Lord! For now, we are putting it on in the morning as long as possible. His oxygen level tends to be good. The thing that causes it to be removed for a break or him to be suctioned is that he's working so hard to breath or is too tired to properly process mucus. Again, pray for strength of the throat muscles and energy in general.
Pray for wisdom and direction, too. There are a lot of viewpoints on the pros and cons of eliminating the trach in these circumstances. Some RTs feel like, "Go for it – you won't know if you don't try." Others say, "You don't want to do this and end up in respiratory distress and be sent by 911 to redo the surgery." The speech therapist doesn't think it should come out (at least until way down the road) as he's eating and it's somewhat of a safeguard incase food goes into the lungs/airway. Some articles say the things that keep you from getting rid of the trach like lack of cough, not being able to swallow well, etc. just MAY be better once it's removed. But there's no guarantee it will. And considering the muscles have been 2 ½ years since normal use, we don't know what actual ability may or may not be there.
• The EMS training is complete. Now it's just up to me to do it. I planned to do it every Saturday, but I was out of town this past Saturday. Pray God will use this to help awaken Pastor's muscles/nerves.
I wanted to share a poem that was sent to me which has been an encouragement to me. It so clearly states so many blessings in the WAIT when God doesn't choose to answer prayer with a red sea miracle. There are so many truths in the poem, especially the one from Job which we learn to not only hear of God with the hearing of the ear but for our eye to see Who He really is.
IN HIS TIME – THE WAIT POEM
Desperately, helplessly, longingly, I cried; Quietly, patiently, lovingly, God replied. I pled and I wept for a clue to my fate . . . And the Master so gently said, "Wait."
"Wait? you say wait?" my indignant reply. "Lord, I need answers, I need to know why! Is your hand shortened? Or have you not heard? By faith I have asked, and I'm claiming your Word.
"My future and all to which I relate Hangs in the balance, and you tell me to wait? I'm needing a 'yes', a goahead sign, Or even a 'no' to which I can resign.
"You promised, dear Lord, that if we believe, We need but to ask, and we shall receive. And Lord I've been asking, and this is my cry: I'm weary of asking! I need a reply."
Then quietly, softly, I learned of my fate, As my Master replied again, "Wait." So I slumped in my chair, defeated and taut, And grumbled to God, "So, I'm waiting for what?"
He seemed then to kneel, and His eyes met with mine . . . and He tenderly said, "I could give you a sign. I could shake the heavens and darken the sun. I could raise the dead and cause mountains to run.
"I could give all you seek and pleased you would be. You'd have what you want, but you wouldn't know Me. You'd not know the depth of my love for each saint. You'd not know the power that I give to the faint.
"You'd not learn to see through clouds of despair; You'd not learn to trust just by knowing I'm there. You'd not know the joy of resting in Me When darkness and silence are all you can see.
"You'd never experience the fullness of love When the peace of My spirit descends like a dove. You would know that I give, and I save, for a start, But you'd not know the depth of the beat of My heart.
"The glow of my comfort late into the night, The faith that I give when you walk without sight. The depth that's beyond getting just what you ask From an infinite God who makes what you have last.
"You'd never know, should your pain quickly flee, What it means that My grace is sufficient for thee. Yes, your dearest dreams overnight could come true, But, oh, the loss, if you missed what I'm doing in you.
"So, be silent, my child, and in time you will see That the greatest of gifts is to truly know me. And though oft My answers seem terribly late, My most precious answer of all is still . . . Wait."
God has been so good to continue to give Pastor progress. As in life, it's so easy to focus on the moment or be discouraged with the struggles and difficulties along the way and not look at the big picture of all that God has done and is doing. It really is miraculous how far Pastor has come. It's amazing how much he can move now, and that it's more and more as months go by. It's amazing how much more he communicates and tries to speak. His capabilities of remembering and thinking amaze me. (His short term memory is definitely improving since the last update—thank you for praying.) For all of this and so much more, we praise the LORD!
Last week, Pastor saw the physiatrist. Praise the Lord she was very excited and surprised at his progress. She kept using the word "promising." She also wrote an order for two things: to evaluate and work on capping (more officially) and to begin electronic stimulation on the muscles. The facility said they are not able to do this due to time limitations, and that only way it might be done is if I had the device and was trained to do it. "Coincidentally" one of our assistant pastor's wives had just given me one. I had NOT mentioned this to the physiatrist, so it seems to be from the Lord. Today, they did a basic evaluation and gave me general instructions. Next session we are supposed to try it. I had the thought this evening to call his neurologist just to be sure it's safe. Please pray that if this is God's will that He will use it to improve Pastor's movement.
This week we've had Karrina, the neuro-muscular therapist, come daily. She is the lady we've mentioned whom we pay to come as God provides. She too was very surprised at the progress. (She said had I not told her about the December setbacks, she never would have known since he'd progressed so much from when she'd last seen him.) Every time she's come in the past, we've seen specific improvement.
A few weeks ago I visited a nonprofit (though not free) outpatient brain injury rehab not too far away. I had toured it before, but wanted to ask two questions: Would they accept a patient with the limitations my husband has and whether they believed it would be profitable? I appreciated the gentleman who started it and has done this for so many years taking the time to sit and talk with me. He was very positive and said that he was certain my husband would improve if he attended. That was quite encouraging. So the next step would be to get a doctor's order that I could take my husband out weekly, which is being requested. For this to happen, I will also need to be trained in his respiratory care. Next, I need to send in an application. I have completed all of the very extensive application except his doctor's portion. I wasn't sure that it could be done or approved on this end, but it seems to be going well. Please pray that if God's will, He will make the way. I also ran the thoughts of moving facilities or going home by him. He said keep him where he is—good facilities are hard to find. On going home, he said, "He's not ready and you're not ready." He basically said to be patient. He gave me a lecture as well. "Do what you can, get help with what you can't do, and what you can't get help with let it fall by the wayside." I'll translate the latter to be leave it in God's hands. That was good for me because there is so much that I want to do for Pastor… more that realistically I can do. On the other hand, It's God who has brought us this far, He gets all the glory. We're only instruments, so we'll trust His guidance going forward as in the past.
A few "little blessings":
Praise God for all—and thank you for your prayer!
It's time for an update. I was thinking since it's just about Valentine's Day that I'd share related blessings. This May we will have been married for 30 years. That's a lot of Valentines. When I was 12 or 13, my pastor's wife told me that God already knew who I'd marry one day and was preparing us (and created me to be HIS helpmeet, though to most of the world and even many Christians that's a forgotten concept) for each other and that I should begin praying for him. At the time, I lived (as my husband would say it) next to the river and in the corn fields in Illinois. He lived far away in Long Beach, CA. God would take us to the same Bible college (though I was heading to another college before God redirected me), where we'd meet and marry. It's amazing to think that just as when I was a young girl and God knew and planned our lives together God knew also we'd be where we are today. I often try to speak to Pastor about what God's plan and purpose might be for the future. Of course we don't know, only God knows; and so we trust Him. I thank God for the privilege it's been to be Mrs. Joe Esposito.
Recently, I put on the speaking valve as I do each morning when I arrive. He always replies with "Good Morning" even before I put on the valve. But often I say we need to practice talking and I tell him to repeat vowel sounds or words or ask him questions, like what's your favorite food to which he replies, "lasagna" or your favorite restaurant which fluctuates between Sophy's (Thai) and Pho (Vietnamese). That particular day I said, "We need to talk." Then in a sort of silly way I said, "So what do you want to say to me?" And I just waited. He replied, "I love you." He made my day!
Pastor continues to eat little bits of pureed food at a time, which I feed him around lunch time every day. Yesterday it was mashed potatoes and pie. He chose the pie first, then the potatoes which must have been very salty to his sensitive taste buds because he whispered, "I need water."
We continue capping a little per day. He has good days and bad days. A staff member in the therapy section here asked me what the plan was with the capping trials. I said, "There's not really a plan…I think it's just me pushing and trying."
We are back off of therapy, but continue our previous plan of working on various areas. The RNA's assist twice per week with standing him up, and I bring the exercise bike for the arms and hands and we do rolling the ball, etc. while standing.
We were supposed to have an appointment with the physiatrist, and I wanted to speak to her about some different ideas and see what areas should be priority. However due to an insurance problem it was canceled. Though I was disappointed initially, I hope to find another soon, and pray it is God's leading to where he wants us to go. I am sure there is a purpose.
As far as strength I believe we've just about gotten back to where we were before the hospitalization. I was really excited last week when for the first time since December I had him pull up a bit in his chair with the PVC pipe, and he can still lean right and lean left when asked. At first when he stood in the standing frame he totally leaned forward onto the table as if he'd lost all upper trunk ability he had gained previously. Thank you for praying for strength and energy, and praise the Lord for renewing strength little by little. Someone sent me a quote that said something to the effect that much more of our Christian life is on the level of walking without fainting than mounting up with eagle's wings.
Here are a few specific prayer requests:
Thank you for praying. This morning my brother in law sent a picture from a Bible of a junior high girl in Cambodia. It's the 4th of July picture of my husband and me in the front inside cover of her Bible with the words written in Cambodian "Please get better Pastor". I wept. Thank you all so much for praying! God does hear, and God is working His will.
Thank you for reading our update once again, and for your faithful prayer. I read recently that the greatest gift that can be given is to pray for someone.
So much has happened since the last update, I am not sure where to start. It's been a bit of a roller coaster ride, but as always God has been very good to us while growing our patience and trust in Himself. The month of December was one of those one steps back my husband used to preach about, "Two steps forward, one step back" but keeping on keeping on… going forward. I told Pastor, we've taken the step back, now let's take the two forward.
We went from all the issues at the hospital described in prior updates, to returning to the sub-acute center, to having pressure sores on both heals (most likely from being more immobile because of the surgery), to being told that there was clotting/blockage that might require a stent in the leg, to having the stomach flu (Pastor and the entire family), and more. It's been a very eventful month. Thank God the pressure sores seem to be healing. A second ultrasound showed everything okay in the legs, so praise the Lord for that!
Pastor has made it back to the uncuffed trach he had before. He now does well again with the PMV (speaking valve) during the day. And we resumed capping trials this past week. Praise God! He did amazingly well with the capping. He breathed easily and even went to sleep for two hours with it on. I'd say he has done better with capping than before he went into the hospital. This is such a blessing to me. Seeing him in ICU on a respirator again (though precautionary and to give his lungs a rest) and returning to see him struggle with the PMV was discouraging. It seemed more like 10 steps backward. I wondered how long it would take to regain what was lost. Praise the Lord! It's been quick.
Pastor has continued with eating trials, so the speech therapist wanted to decide whether to allow him "pudding thick" food for "oral gratification" with the family feeding 5-10 bites a few times per week or discontinue altogether. She was not sure, so she had another therapist come and test him. He DID have blue dye from the lungs when he tested him. (My son said the therapist fed him large bites and quickly. We usually go very slowly and cautiously waiting for a swallow and making sure it's clear before the next bite.) That therapist said that it's a risk. So the therapist here said that basically I needed to decide if I want to continue for "gratification" and "quality of life," at the risk that he might aspirate at some point and may get pneumonia (which in her words is the downfall of many patients – some who never really recover). The alternative is not to take the risk and decide not to feed him. I asked her if I said no, would that mean that I'm resigning to never eating because not using it most likely means losing it. Eventually, I asked her what she'd do if it were her own husband and she weren't the speech therapist. She said she'd probably do it cautiously and stop at any time there's any seeming congestion in the lungs. Then she explained more briefly to Pastor, who had awaken at that point. She asked, "Do you want to not risk it, or do you want to go for it?" He delayed a bit, then whispered, "go for it."
The underlying hesitancy in the area of both the trach being capped and feeding is that though Pastor swallows, he doesn't seem to be able to cough intentionally when asked. That is a marker to them that he's a candidate for capping or food. He also aspirated in the initial test on all levels but thick. Again, by not doing either most likely he'll lose it all. It seems a bit of a vicious cycle. Pray specifically for the strengthening of the muscles and vocal chords, that he will become efficient in coughing and clearing his throat on purpose, and absence of aspiration into the lungs while we cautiously feed him and hope it helps him become stronger.
We are thankful physical and occupational therapy have been working with Pastor the last two weeks since returning from the hospital since he re-qualifies upon re-admittance (as long as he reaches goals set for him and improves functionally). It's been a little sad because he became weak and has been unable to respond to some things that he was very easily doing before the hospital admittance. Some of the things we were working on and becoming efficient at (like sitting forward in the chair) are on hold because of 3 months of limitations in movement placed due to the surgery. He has reached some goals. We're working on his using his left hand to wipe his mouth, pull a brush up to his hair, bring a toothbrush to his mouth. He did it for me to video when the therapist wasn't there. Pray for strength and energy as well as quick healing.
Also, please pray as I am seriously considering testing Pastor for the eye tracking device again. Pray for his ability and that insurance will cover much of the cost. It works in such a way that he types using his eyes, and the machine speaks for him. When we did it in the past, his eyes' ability muscularly to maintain focus on a letter long enough was too weak. You could see his eye go to the letter J for example when asked to spell his name, but it would quickly flutter away before the machine could capture it. I'd been praying about whether God wanted me to revisit some areas like that I have filed away in a folder for a future date. Something I read made me want to retry. It was about a man who was disabled completely but still had a strong mind and would dictate his thoughts. When he could no longer speak, he used a device that captured a slight touch of the fingertips. He spoke of utilizing what is NOT disabled and looking at what you do have rather than what you don't. It was good for my perspective, and I read it to my husband. It also caused me to revisit this idea. (A year ago or so I read of a Jewish rabbi who used blinks of his eyes to communicate his sermons to his wife who wrote them down and they were read aloud.) I don't know what God has in store for us, but please pray about this device.
More than anything, please pray the Great Physician will give us a great miracle that all may see and know and understand that the hand of the Lord hath done this. I walked into one of our nursery classes this morning which doubles as a school classroom. On the wall were the school children's prayer requests. I read, "Pastor come home." It made me weep. (I dreamt last night he was home and well.) I so appreciate that so many folks continue to pray. I've said it before. It means the world to us. Thank you!
Thank you for all of your prayer over the last couple weeks. It has meant so much to us. Here are some updates on various prayer requests:
• Lungs—the lungs are much clearer, thank the Lord. Pastor is having occasional suctioning. I was happy the speech therapist came back in today to work with him today. He definitely needs prayer to get back where he was. He has been in a cuffed trach for over two weeks and hasn't had his speaking valve on or been capped. He struggled some today, and only swallowed two of five bite/drinks of the thickened water. He was having a bit of a hard time with the breathing through the PMV. They say each different way is a totally different sensation, besides he had progressed to one where he would get more air through. Please pray that we can get back to the previous level and progress from there.
• Heart—The cardiologist said he has a murmur (We already knew that.), but that it was insignificant. He said, "He doesn't need me."
• Hives and swelling—Thank the Lord the allergic reaction symptoms are gone. Praise God! (He was very miserable. I had never seen such hives and swelling before.)
• Surgery—Surgery went well. It will take three months to completely heal. He is limited somewhat in movement, but there is still much he can do. Physical Therapy came in today, and Pastor Esposito sat up on the side of the bed and did very well. He just tired very quickly. The therapist was VERY surprised at the strength in his hand. He still is requesting some pain medication but is very obviously experiencing much less pain. Pray he quickly regains strength and, again, gets back where he was and can go forward.
God has been good through two challenging weeks. Upon arriving back to Huntington Beach, I asked Pastor, "I know we don't prefer to be in any hospital at all, but is it sort of good to be back in your spot over here so we can get back to getting well?" He agreed. I prefer not to publically post our thoughts on God leading us in the decision of going back to Huntington Beach, but feel free to ask me in person if you would like. I have been given MANY opinions from far sides of the spectrum. For now, I believe that we are where we should be (not without MUCH struggle and prayer and contemplation).
Thank you again. We pray that you have a VERY MERRY CHRISTMAS.
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.