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..."
Thank you for reading our last prayer update. I wanted to just post this quick but important praise report and prayer request.
After 3 ½ years, the RT's will most likely be removing Pastor Esposito's trach completely this weekend. Two test results are pending. We are excited, but I must admit it's a bit scary (I've seen complications of other patients while being there so long). What I really wanted was to see the ENT (pending appointment) and pass the swallow test at the hospital; then remove it. But Friday the pulmonologist said let's take these two tests; then if they go well—let's do it! I've said that when the pulmonologist said it's time that we would do it. I mentioned my concerns, and they thought that he was ready and those wouldn't be determining factors. The speech therapist assured me she thinks he'll eat better without it (last time I mentioned to her she's asked me "why would you take it out when he could easily aspirate and get pneumonia". But she sees how much progress he's made.)
Please pray the Great Physician has His hand on Pastor Esposito, and that all goes well.
Thank you for your faithful prayer.
I'd like to ask forgiveness for the lateness of this update. I appreciate that so many folks read and depend upon these updates to pray for Pastor Esposito, and I feel bad that I've taken so long to write another. I have been eager to share some blessings! Pastor Esposito seems to all of us to have begun improving at a faster pace than over the last few years. (Of course, he still has so very far to go and from an outside perspective I'm sure doctors would say it's slow and holds no promises.)
Let me share some examples of alertness and progress:
These are just some of the little but big ways that we've been excited to see God working. I often say, "Joe do you realize what a really big miracle little things like this are?" Then I tell him about how absolutely nothing outwardly worked and how far he's come.
God really has done so much and brought so many miracles! There was a session at Faith Baptist's ladies conference by a missionary of 10 years. She gave her life testimony of a very bad childhood. She became a bus kid and got saved, eventually going to Christian school. She felt unworthy but grateful and continually said that she was going to be a missionary like her bus captains. Then the day came when Satan sat on her shoulder showing her all that she didn't have in comparison to the "Christian family kids". He showed her how hard she'd had it. She struggled until once again she was able to see how good God had been to her. She was blessed to marry a third generation missionary. She gave the illustration of the black dot on the white piece of paper. Everyone says they see a black dot, and she reminded us that we really see a big piece of white paper. Her testimony was powerful, and God used it to work in me. Her testimony reminded me in some ways of me. I didn't grow up in church, but God led me to a neighborhood church where I picked up a tract and was saved at home that night. I eventually ended up in Christian school–a bus kid of sorts. I always felt that unworthy gratefulness to God, especially when I got to marry Joe Esposito. I felt I was the most unworthy candidate! And to go on and share all of God's goodness in my life since will have to wait for the writing of a book. But how easy it is to listen to Satan on your shoulder causing you to look at the black dot and forget the white piece of paper! God really is very good if we open our eyes and look at the blessings all around us.
A few other updates:
• Trach removal: Pastor is back to being capped around the clock with no oxygen. His lungs seem clear. An ENT appointment to verify there's no build up scar tissue, etc. is in process of approval. Today the tube is being downsized again–one more step forward. They will observe a month and see how that goes.
• Today we are having an evaluation for eating again. We haven't tried since the pneumonia. Speech therapy also is going to do an evaluation for a report necessary for the eye tracking device free trial the company evaluator recommended we do.
Someone asked me recently, "When are you going to take Pastor home?" Another asked, "What's keeping you from taking your husband home" The short answer is when God gives me peace that it's what is best for him and what will help him progress. I'd also want some professional advice that he's medically ready and that I can safely take over the care that presently is done by RT's, CNA's, RNA's, the doctors, and nurses here. As of yet he's still in sub acute level care. (A majority of skilled nursing centers don't even accept patients at that care level.) I'd love to have him home a long time ago; and I never stop thinking about, struggling back and forth, crying, and praying about it. Please pray for God's guidance that when it's time He will make it very clear. My husband used to say, "Don't make a move unless it's very clearly God moving you." That sense hasn't come yet and is probably why I do struggle so much. In the meantime, we will keep on praying and doing what we are doing and praise God for the increased level of progress we have seen lately.
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.