Thank you again for your prayer! It's been just a month since the last update, but it seems like so much has happened since then.
Praise the Lord! Pastor Esposito was at church the last three weeks in a row. I will play it by ear, but I hope he will be able to go weekly. The first week he attended my son's adult class, then stayed on the patio overflow for the main service. He was greeted by many people, waved a lot, and was very attentive. The minute I got him in the van he fell sound asleep and didn't wake up before I left for night service several hours later. The next two weeks, he made it through Sunday school. Then he was ready to go back and go to bed. I was so excited to have him there. It's been a long road and from the start no one, humanly speaking, would ever have thought that day would ever come! Thank you to all our people who greeted Pastor. He had enough energy to acknowledge the first several people with a wave or facial expression; and then he ran out of energy. He does recognize people, and I feel certain he is encouraged if you greet him. He just can't always respond back. Please do keep greeting him.
Returning to church was encouraging, while at the same time, personally I struggled with the fact it wasn't the way I'd always hoped or dreamed-coming back strong with some standing ovation for God's great miracle of great healing. I'm just being very transparent. I had to ask God to forgive me that first day, for wishing it had been different, the way I wanted it to be rather than the way He'd chosen…for a lack of gratitude for all God's done. I have to choose to trust my loving Heavenly Father who only knows and does what's best-His will, His way, His timing.
Over the last about four weeks, there has been something dramatically different at times for which we don't yet have an explanation. It sometimes starts with Pastor holding his head, then tremors, and then an extremely high level of frustration or anxiety. During those times he often seems like he's backtracked a couple years as he'll stare to the side unresponsively or sometimes speak random things not being his self in spirit. Yesterday, he was staring deep into my eyes and blinking his with very hard intentional blinks as in the past when he couldn't communicate at all. It comes on unexpectedly, and lasts various amounts of time. One moment he will be talking to my son about China, and the next in that state and a while later back to "himself." It's so hard to see him in that state, and I don't know what to do. One day I was crying, and he snapped out of it enough to say, "Don't cry." I told him I'm sorry I don't know what's wrong, so I can't help you. I tell the staff, but it's been slow getting any action. I have been pushing for a neurologist for weeks. Sometimes I'd call nurses in and say to look at him tremor. Should I not be worried? I'd tell them this was totally out of the ordinary and something is definitely wrong. Then he went in for a CT scan to check the shunt. Praise God it is working fine. Monday God worked it out for him to see a neurologist at the facility (the appointment out was going to be two more months out). This week X-rays were done of the neck to see if there's something causing pressure to the spine or head. Someone with a son with head injury told me it sounds like a type of seizure her son was having. A nurse from the place where he goes for therapy encouraged me by telling me that her husband went through that and it seems things waking up and part of the brain healing and a real frustration at a new level of awareness. I don't necessarily know how to ask for prayer. Maybe it's good, and I shouldn't pray for it to stop-maybe not? Please just pray for God's continued healing.
One thing that I definitely sense, a good thing, for sure though I feel sad at the moment, is an awareness of not being home or a discontent of being there. He's said, "Get me out of this bed" to his brother, "Let's get going," to me and then I asked where and he said, "Home." Often under various circumstances he just says "Hurry." Then I tell him we once lived a life of "Hurry," but now God has us in a place where He wants us to slow down and be patient and trust what He's doing in our lives.
We have begun drawing out how we will move the laundry area to outside and create a shower room by taking that half of the kitchen and how we can widen some doorways to make a way to get my husband into a downstairs room that hopefully will become ours. Yesterday my son completed the connections for moving the laundry out back. (It's funny how God uses trials to change our perspective as in the beginning I didn't even want to talk about the downstairs room. I sentimentally wanted him to come home to the room upstairs just as it was. Now I just want him to come home!) The shower room will be a pretty big project to tear out the floor and put a sloped floor with drain and so forth. Everything will get tiled and there's a window to take out. I've heard you can once in a lifetime get a ramp through insurance, but haven't checked on that yet for coming in the front door. Anyway, PRAISE THE LORD WE'RE TAKING STEPS!
I don't know how practical I am being in this decision, but I definitely believe at this point it would benefit him to be more a part of real life. Though I know the care will be around the clock will be hard work, it's not a level of care that requires so much skill now that he's out of subacute department- just strength. For medical issues I will just take him to the doctor, and for emergency - we are near the hospital where I took him in the beginning. I also believe as a family we are in a place where I think it is important for me to be around home more often with our teenage boys. It will also alleviate much travel time for the adult children that go weekly or twice a week spending evenings there. I'm not blind to all the benefits and hard work of the staff where Pastor Esposito is and owe them a great debt. I just feel a peace that it's time to go home - well as soon as practically possible. Pray in the mean time for increased strength on my husband's part in little ways in which he can participate and make care easier - like sitting forward, bending up his knees, etc.. If this isn't of the Lord - pray He closes the door.
I forgot to mention in the last update a praise to the Lord for allowing me to win a lady across the hall to the Lord. With tears she prayed and was so grateful. Those moments make it all worthwhile!!! Please pray that she will come to church.
Thank you again for so many ways many of you have encouraged us and been a blessing! We surely appreciate you more than we could ever express.
My husband had quite an infection in his lungs for about a week and a half. (Praise God it was not pneumonia, one of the greatest concerns.) He was back on oxygen and had to be suctioned for a few days using a tube through the nose. I was thankful to still be at a facility with respiratory therapists. I am thankful he is doing so much better.
We asked for prayer for switching from the special air mattress to a normal hospital mattress. The doctor was concerned about pressure sores, etc. Praise God his skin has been fine other than a very bad allergic reaction to medication for the infection.
One of my saddest truths is that I don't have the physical capability to do more to help my husband regain strength. We've been so thankful for High Hopes, and the amazing help they've been. He has come far. At the same time, I always have this desire that I could help get him up at other times or get him sitting or on his feet more. I really believe that he has capability and simply lacks strength. I was discussing this with a therapist in our church. Just a couple days later upon arriving at High Hopes, Mark the director told me we were going to try something new. He told me, "I was thinking about this when I woke up in the middle of the night." So that day they began having a man on each side doing sit/stand/sit/stand to help him start being able to get himself standing. I told my children that's God giving me the desire of my heart by waking Mark up thinking about it in the night! God's so good to show Himself strong. A week later my son was there with him and Mark said, "I want to get him walking, but we need to get rid of this oxygen again."
"Cause me to hear thy lovingkindness in the morning; for in thee do I trust: cause me to know the way wherein I should walk; for I lift up my soul unto thee. Deliver me, O Lord, from mine enemies: I flee unto thee to hide me. Teach me to do thy will; for thou art my God: thy spirit is good; lead me into the land of uprightness."
I want to begin taking Pastor Esposito to at least Sunday morning services. Pray for his energy level to be good and that he'll be encouraged. I don't want to overwhelm him, but I feel comfortable with transporting him alone in the medical van Sunday mornings when there's no traffic (as long as the infection has healed properly).
My heart's desire would be to get him home in this next year. He's gaining strength, and I'm hoping he'll progress to a point where he can participate enough that I can care for him 24 hours a day on my own. I have family of course; but family with families and jobs, so they are limited. I haven't gotten any counsel yet to do so, but the director at the therapy place says to begin working toward it (getting ready at home, etc.).
Thank you for your love, encouragement, and for continuing to pray through the last few years. We were in two churches this summer and saw my husband's name yet in the prayer bulletins, and often we hear of folks praying still. Thank you for reading the updates. It surely blesses our hearts.
On June 26, I wrote the following and neglected to post it. I am writing this short update to request prayer. This Friday, June 30th, Pastor Esposito will go to the hospital to take the swallow test again. Please pray he passes and that this is a step toward one day being able to remove the feeding tube. He's been doing very well with speech therapy which helps with swallowing/eating.
That Friday the test was done at the hospital. I watched and recorded the test as I did last time. He had gotten up early for a shower and then left to the hospital. He was very tired. He has been swallowing 10 bites, but he was stuck on the first bite which stayed in a pocket in his throat. The flap that protects the airway apparently didn't move, and he wasn't coughing enough to clear the bite. The therapist at the hospital spent the next while with the suction device trying to provoke his cough to get that up. Then she tried a thinner bite hoping that would work to cause a cough. She stopped at that point, as it was still there. She did not give clearance for ANY food. Last time he was cleared for "pudding thick." Then I made a mistake of asking if she thinks that he can ever progress toward removing the tube and eating. She said at best "Pudding thick for oral gratification" but not now and to continue with small crushed ice chips. It seemed a step backward. I think the therapist back in HB and I both had hopes that he'd pass further levels, so needless to say I was disappointed. To me this was to be our next big step.
My mistake was in the asking. Over the last few years, folks have asked me, "What are the doctors saying" about this or that. I say, "They aren't saying anything." That's the truth for one, because they can't say anything will ever change. It's been that way from the coma stage—"No hope". It was 10% he'd wake up at all, and no promise of anything further. So to ask is to ask for disappointment. I should know the answer already.
Every step accomplished is purely by the grace of God. I asked my husband this morning how it feels to be out of the wheel chair for a bit (since the folks at High Hopes put him on a regular chair for his first exercise). I said, "Pretty nifty?" And he said, "Pretty nifty." I said, "Yes since you are still supposed to be in a coma. And it's pretty nifty that you said, 'pretty nifty' since you shouldn't be talking either!"
Back to the testing. Several days later the speech therapist from HB called me and we talked. Praise the Lord she was VERY positive. She said that last time it was pure aspiration. This time it was labeled "penetration" and that is a GOOD thing. She said even though we expected way better, it's improvement. She also said not to be discouraged that she'd keep seeing him and for me to also do the exercises and crushed ice too. She said that we'd try the test again in a couple months. I am confident they wouldn't change any future predictions, but we'll take progress and Praise God for it. One hard thing is that he's been saying, "I'm starving" or asking for "real food." (Thank God he CAN say that!)
Also, please pray as we do a trial for a week using a regular hospital bed. He's been on a special air mattress to prevent pressure sores (he had gotten them on his heels at one point and elsewhere another time). The purpose of the change would be to see if he can tolerate it and thus be able to try being set up on the bed with his feet on the floor to balance and strengthen his trunk.
Please also pray once again about insurance and God's timing in everything. I was able to get permission to take my husband to our church picnic for a bit on the 4th of July. It was really nice for him to finally get to see some of our folks and their families he hadn't seen in a long time. I hope it was encouraging to him. He seemed to enjoy it, though at times he was very tired. He was exhausted when he returned to HB, but I think it was well worth it.
Thank you for your love and prayers and continued encouragement to our family. It means a lot to us.
Thank you for reading our updates and for your faithful long-time prayer for Pastor Esposito. It's been a month now since the trach removal. Overall, Pastor is doing well. He's been more alert, and his voice seems to be getting stronger. We're very thankful that speech therapy is still working with him on his voice and swallow. He's definitely getting stronger. He's able to use his tongue to press back against the stick, move his tongue side to side, attempt to lick his lips. These are all evidence he's getting stronger in that area. One thing still lacking that's important (and most of the reason he was on the trach so long) is that he still can't seem to figure out how to clear or cough intentionally. His reflexive cough has been there for a while, but it's still really important for him to be able to do this on purpose. I don't know what's working or not in the throat. Please pray it all wakes up! I talked to one family and their loved one has been told that some of the muscles in there are paralyzed. I was worried this past week since he was very congested. They did an X-ray and blood work to make sure it isn't pneumonia. This morning though he still sounds very congested. They said the X-ray revealed no pneumonia. We were praying for that! Thank the Lord. I think it sometimes sits in his throat and he can't process it, but thankfully it's not in his lungs. We pray God gives us the next miracle and Pastor is able to have the feeding tube removed and eat again. As he gets his feeding tube feeding, we thank the Lord that his organs are able to work and digest food at all, but we also pray for the miracle of eating and removing the feeding tube soon.
Therapy is going well. He was lifting his left leg all the way, moving it forward, and setting his body weight on it in the walking frame. This is an improvement over just moving it forward while someone helps lift it. We've seen a bit more on the right side. Praise God for allowing us the opportunity to attend High Hopes Head Injury. I pray each time as he's in various equipment that God will use it. I realize it's only God's touch that heals.
Pastor has his very alert days, which are much more alert and communicative than ever, and he has his days like yesterday where he is just exhausted. I think he gives all he can until he just can't give any more. He's in very good spirit just about all the time. He smiles and laughs a lot. Yesterday, he couldn't keep his eyes open for speech therapy and wasn't opening his mouth. I whispered, jokingly, "Don't be stubborn" which he found to be very funny and he was laughing out loud. We laugh mostly at the sign language he attempts to use, but which I can't understand! I say all the time, "We can laugh or cry–may as well as laugh." (Not that I never cry ). On the medical side, I do hope to ask the neurologist soon if he thinks it's safe to remove or lighten the Keppra more. Besides that, the only medication is a light "non-drowsy" allergy medication. I did notice a new level of distant awareness recently as he was turning his head toward the hallway on the right (he tends toward the left) and even asked what someone was doing out there.
One of my concerns, at least sometimes what I wonder, is what my husband is thinking Spiritually. So often I ask him little questions to see what his responses are. The other day I played one of our family's favorite songs, "I Have Been Blessed." When it said, "arms that can raise, legs that can walk," I wondered what He was thinking. I asked, "Can we still thank God without the arms that can raise and legs that can walk?" To which he gave a sincere nod of his head.
In another example, I listened to Pastor Fugate's message on moms on Mothers' Day. I told my husband the thing that stood out to me was when he said about praying moms that the most influential prayer that his mom ever prayed was a prayer that wasn't answered. Then he went on to talk about how his mom prayed for his dad's healing and God said no and his dad went to heaven. He talked about how his mom continued to trust God anyway. When I told my husband that lesson I'd taken from the message he raised his left arm as high as he could and with a closed fist did three "fist pumps" as in AMEN.
Those moments are such an encouragement to me knowing my husband praises and thanks God still in spite of his confinement to his body for so long. That's what I want for Him and for our family to know God's in control still and to be able to see all the goodness of God. We were blessed to be moved in a middle bed when we left sub-acute (I'd have wanted a window bed.) between the two most encouraging patients here. One said yesterday, "Have I told you how I know if it's a good day?" "I woke up!" (I did talk to him about the potential of waking up in Heaven one day.) Today I said to him, "It's a beautiful day, isn't it? But every day is a beautiful day, right?" He said, "Yes, every day is a beautiful day if you just open your eyes."
Thank you again for your prayer and encouragement!
Praise the Lord the trach was finally removed Saturday evening May 6th. This is a miracle! Once it was removed, Pastor Esposito seemed very alert and able to communicate easier. He's had a very good week. After a week, he was moved to the SNF. As of today he was very tired and seemed a bit "rumbly" in his chest. We were a bit worried today that maybe through the night he was unable to cough or swallow properly. Please continue to pray for strength in swallow and cough. It was only a couple weeks before removing the trach that he finally seemed to have the ability to cough completely to the mouth. He still needs prayer for that strength to improve to do so regularly. I believe speech therapy will still work with him this week on these.
Thank you for praying, and thank the Lord! Many folks have acknowledged that this is God. Isaiah 41:20, the verse we've had posted from the start, reads, "[Pray for a Miracle] That they may see, and know, and consider, and understand together, that the hand of the LORD hath done this..."
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.