This Christmas season wed like to thank our Savior for coming to earth to be born to die that we might have life… but not only life, life abundantly, a life of peace on earth. Praise God we can find peace in Him while on this earth! Wed also like to thank you once again for following this site and for your faithful prayer this past year. Please forgive me for having taken way too long to write this update. I have thought much about it, and about all those of you who read to know how to pray and to praise the Lord. Partly, I have procrastinated due to extreme business, partly because I have thought round and round in my mind about how to write this update and what to say. So Ill do my best to be open and give you a better view of what is happening. I may be a little long in order to be thorough. Over six months ago, the neurosurgeon (based upon the response he saw, and the need to do something proactive) wrote an order for Pastor Esposito to see a physiatrist (fĭz′ē-ăt′rĭst or fĭ-zī′ə-trĭst). I suppose we looked forward to that appointment with both anticipation and hope as well as a bit of hesitation not desiring to be disappointed by unfulfilled expectations. Finally, on December 8th, the appointment came. Pastor Esposito, as I said in the brief update that week, was very responsive. It was exciting, while at the same time it broke my heart, to see how very hard he tried to do what he could to show the doctor, Im in here, and I hear and understand! She asked if he could raise his eyebrows, and you wouldnt have known that anyone could raise them that quickly or high up. She asked him to point his toes up, and though he pressed the wrong direction, he quickly pressed both of his feet far forward, including the weak side that has little movement still. He raised his arm at her request, tried as best he could to open his mouth to say hi, and opened his hand all the way up, etc. The physiatrist asked the history, asked many questions, looked at his medications, etc. She then focused on the topic of medications: She said the present brain stimulant needed to be changed to early morning and again at noon rather than at wake and at bed time. This should give more day time alertness while we are trying to work with him in other ways to wake his brain and body up. She then told me that shed like to try one more medication that is not FDA approved for waking up the brain, but rather as an anti-viral, but which has had success as a wake up medication. She would write a one week delay to first change the other medication. She also felt the need for a minimal dose of a muscle relaxant at bed time. This would help two fold. First hed sleep better (she suspected hed been awake at night from the other medication, and possibly pain from being tight) and also that it would help us to get more daytime movement from him since it would relax the muscles enough to be worked more. A patient in this state tends to get what is called contractures (muscle is permanently tightened or (contracted) or shortened, most often caused by spasm or paralysis). As we work with him, his body often wants to work against us. I dont know how to describe what my hope or expectation WAS. Perhaps a test with a grade that placed him on a rising scale? An evaluation that gave me some prediction based on his progress so far? A name for his present state? The physiatrist said that the various coma or brain injury scales, etc. dont really fit his present situation, though she did tell me he is NOT considered in a coma any longer (some have asked). I guess I knew that my expectation of those types of answers was unrealistic, though I still hoped. And I was reminded once again that God remains the only one in control and only He knows our future and what He has planned for us, and what He has planned is what is best. For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end. (Jeremiah 29:11) If I were to recap the appointment, it would be to continue what we are doing, take a few more steps, push just a bit harder… seek progress. She mentioned some ways to do so. For example to have him in the chair twice per day for two hours instead of 3 hours once per day. I asked about the tracheotomy as well. She said it was not her area of expertise, but that I should talk with the pulmonologist at the facility that sees him regularly about potentially trying the pmv valve for longer periods of time. (I did speak with the pulmonologist since and this has begun, So far, he has seemed to do well with it other than a slight decrease in oxygen, according to one RT, but within safe range. Doing this should strengthen his lungs and diaphragm.) The physiatrist then asked me if I had any questions. It was one of those moments that are hard to know what to say. I have a million questions that flood my mind endlessly every day, to which I wish I had answers. I hesitated and asked her, what questions should I ask? I tried to explain to her that I have been hoping and looking for some answers, at least guidance. She helped me to step back and see that #1 the neurosurgeon was proactive in writing the order for me to go there. Then the neurologist was proactive in trying the earlier medication. And now she had laid out a few steps we could take to try to push forward a bit in various areas. She said lets try these steps and then bring him back in two months to evaluate. I tried to smile and I asked, are you telling me to be patient? (It seemed so.) She responded basically that I had been very patient, but that we needed to take the steps we could. Rest in the Lord, and wait patiently for Him! The verse I have quoted to my husband countless times. I also asked her perspective of going home, same answer. Be patient (in different words). Focus on the steps you can take and take them rather than looking at where you want to be. Help him to get strong. (my translation) Seems on the surface the answer is an oxymoron—wait, be patient…take steps, push. God brought to my mind the verses Stand still and see the salvation of the Lord. I looked them up. If you read the places that was written, they werent standing still in the sense of not moving forward, it was a resting, depending trust in the Lord while taking the steps he gave them to take. THE SECOND APPOINTMENT was on December 11th. It was with a practitioner using a different method. I was referred to this method by the author of My Stroke of Insight which I was recommended to read when we were in the ICU initially. Insurance will not cover this method, but having read the related book Children Without Boundaries it seemed very much that it may be something helpful to try giving the brain awareness of parts of the physical body it seems unaware of. (It was mentioned that perhaps he has right neglect though sometimes it seems so but not others.) I plan to have the practitioner see him at least a few times. The first appointment the practitioner seemed to just be trying through movement to get to know him and the movement he does and doest have. Please pray that God will use this method if His will to bring him along as well. Early this morning, surgery was done to replace the feeding tube. The procedure went well, and there are no restrictions. Praise God one of the technicians who traveled in the ambulance to the hospital with Pastor excepted Christ as Savior this mornng! I wont give the details here, but it was Gods perfect timing. I believe even including all the delays to getting the peg replaced… Pastor would have called it the season of the soul. I told Pastor the angels were rejoicing in heaven as he lay on the table. Now a few general updates, which are praises to the LORD. Pastor Espositos right hand and arm movement are more frequent. He shakes and nods his head more frequently. He has seemed to want to move his mouth to talk recently on several occasions. He tried a lot yesterday to do mmmm and ahhhhh, but I only hear air; although, he is definitely trying. Hopefully with more try he can become stronger, and get enough air through the windpipe to make sound. I have him blow the razor each morning for the same purpose. For some time he has been watching GEMIINI a type of speech therapy I found online. His general responsiveness/alertness is growing little by little. His balance seems better when we sit him up. Today we barely held him after we sat him on the side of the bed and put the PBC 25 Year Anniversary video on for him to see. Praise God once again for our little miracles. Praise God for giving us baby steps. Praise God for growing us along the way…teaching us to trust Him more, to depend upon Him more. God is good. Thank you for your prayer, love, encouragement, notes, e-mails. Thank you for allowing God to use you to encourage us. May you have a very MERRY CHRISTMAS & A BLESSED NEW YEAR! The Esposito Family P.S. As I am sending this e-mail Pastor is in the chair waiting to go outside. I placed his hat on his lap. He is trying to lift the hat up and tilt his head down!
Posted on: Mon, 29 Dec 2014 16:28:10 +0000
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