An Update as of 9/30/12

This is the day that the Lord has made. Let us rejoice and be glad in it! Yesterday, Bob was breathing well enough on his own that the were able to put a speaking cap on his trach and he was able to talk with us! Although it was halting and slow, it was wonderful to hear his voice for the first time in nearly a month. Ever a curious fellow, what he mostly had were questions for us. 

The area of Bob's brain that has been most severely impacted has to do with memory. At the current time, he has difficulty encoding new memories, as well as retrieving old memories. For now, he is living very much in the present moment! He has very much enjoyed Skyping with family members, as well as watching  slide shows and videos of recent family events. He did not remember that he has a new grandson, Everest, but was tickled to see pictures and videos of this precious new little person. Michelle reminded Bob of the advice he had given her when she was in the hospital recovering from her C-section, which was to Practice Mindfulness. He grinned when she told him that, so she made him a sign that reminds him of that to post at the end of his bed.

We still have a long way to go. Bob has another round of immune suppression tomorrow, and we continue to have to be on guard against the three enemies of infection, clots, and bed sores. We still do not know precisely what Bob has or what caused it. The leading contender is Autoimmune Encephalitis, but we don't know that for sure. This is a very new branch of science, so not a lot is known. The tests from the Mayo Clinic all came back negative, so he does not have one of the kinds of it that they know a bit more about. We have not yet received the results from the world expert in Spain, who is working on some tests for new variants of this disease and offers these tests free of charge in cases like Bob's when the existing tests have come out negative.

Please continue to keep Bob in your prayers. As fun as it has been to have him awake and aware, he is still in a medically fragile state. We are so grateful for all of the love and care that has come our way.

Megan 

An Update as of 9/28/12

Today was another happy day of really great progress for Bob. As I headed for the hospital this morning, it was my intention to ask at morning rounds how soon Bob might start with physical therapy because it seemed to me that he was ready for more than my little “ICU Pilates” exercises. Well, a few minutes after I arrived in Bob’s room, and before morning rounds even started, in walked two physical therapist and an occupational therapist! Somebody else must have thought he was ready for more too! Those women were wonderful in getting Bob active in washing his own face, and reaching for things. Then the highlight of them all was to get Bob up and sitting on the edge of the bed. It was a huge effort for him after lying in bed for a month, but we all cheered and he smiled.

More physical challenges followed as he was taken off of the ventilator to breathe on his own with just some oxygen support -- first for a two hour stretch of time and then later for four hours. He did great with that. Those great runner’s lungs are serving him well. He also sat up in a chair for three hours, where he was treated to an “ICU Spa Day” with a shampoo and shave. The staff in the ICU are all so pleased with his progress. Nurses who have cared for him previously kept peeking into the room to share in the happiness at seeing him awake and making progress.

Another thing that helped today to be a good day was that Bob was finally able to sleep for about four hours last night. He had hardly slept since he first woke up on and it was beginning to wear him out. He also took a short nap after his morning exercises and another in the early afternoon. The doctor explained that while Bob was in the coma he lost any sense of natural day and night rhythms, so it takes some time to reestablish a natural sleep cycle. We are praying for Bob to get a good night’s sleep tonight so he can begin to get those natural rhythms established.

We continue to be so grateful for all of your prayers. They are certainly making a difference!

 

An Update as of 9/26/12

Today was a happy day! Bob was more alert and more responsive than he has been since he was sedated for the second time at Riverside three weeks ago. His eyes were showing recognition of us, and he could communicate by blinking his eyes. By the end of the day, he was able to nod slightly, make facial gestures, and mouth simple questions like “What happened?” and “When?”. He got a case of the giggles this afternoon, and his silent laughter was infectious even though it caused all kinds of alarms to go off on the breathing apparatus, and sent him into coughing spells.

Bob is still extremely weak from laying in bed for four weeks without moving. The muscles they are working most diligently to strengthen are his diaphragm and those related to his breathing. They put him on a two hour trial with only minimal breathing support this morning, and he did so well that they extended it to four hours this afternoon. He has a good strong cough and is often able to clear his passageways himself. Tomorrow they are talking about a trial of taking him off the vent for a period of time with only some oxygen over his trach. Bob can move his fingers and toes now more consistently, and with some assistance was able to move one of his arms up to scratch an itchy nose.

Bob really seemed to remember things that we talked to him about, like running marathons and where he grew up, as well as the family and friends that we talked about. His short term memory is not as good and may take some time to recover. So I answered his questions about what happened, when,  and where we were many times throughout the day. I also told him again and again that thousands of people around the world were praying for him. He often mouthed “Wow” when I told him that. As I was getting ready to leave this evening, Bob kept mouthing something that I didn’t understand. I reassured him the best I could that he shouldn’t try to figure it all out tonight and that he should try to get some rest, but he didn’t seem satisfied. It was breaking my heart to leave him seeming so unsettled, but it was shift change for the nurses and time for me to go. When I turned back at the door, I suddenly understood what he wanted. He was saying “I want to pray.” When I finally understood, his eyes lit up and he nodded. I came back and offered a heartfelt prayer for Bob’s healing.

One of the miracles that Bob was privileged to be a part of during his years of ministry was when he prayed with a man in the hospital who was discouraged because he had just received his second kidney transplant but his body was in the process of rejecting it as it had rejected the first. It was close to the point where the new kidney would be damaged beyond saving. This was a good man who, like Bob, spent his life helping and serving others. In talking with him, Bob realized that this man thought it would be somehow inappropriate for him to pray for his own healing. Bob assured him that God would be pleased to receive his petitions on his own behalf. From that very night, the man’s body mysteriously stopped the rejection of the kidney, and the transplant was ultimately successful.

I remembered that story this evening, and I reminded Bob that even though he could not speak out loud because of the trach, God would certainly hear his prayers for his own healing.  The anxiety melted away from his face, and I was able to leave him in a much calmer state.

So I am pleased to add one more heart to those thousands lifting prayers for Bob’s healing, that of Bob himself.

An Update as of 9/25/12

Today was a roller coaster day. It was mostly a day of good news and encouraging signs, punctuated by some hard moments. When we arrived at the hospital this morning, Bob’s eyes were wide open and we saw a look of recognition when he saw us. He was able to follow us with his eyes, and seemed to be understanding what we were saying. He was able to answer some yes and no questions by opening and closing his eyes, and turn his head a little.  We even had a Skype session with Bryn.

As the day went on, Bob was able to add a few more competencies. I went out for a walk after lunch, and I got a text from one of the doctors that said “Guess who is obeying some simple requests!!” I hurried right back and found that Bob was able to squeeze his hands a bit, and later he even began to wiggle his toes a tiny bit. These signs were greeted with great joy not only by us but by his nurses and the others who have been contributing to Bob’s care.

In addition to these moments of joy, though, there were some difficult moments when Bob was struggling and uncomfortable, apparently suffering from withdrawal from the pentobarbital and with taking back over more of his breathing on his own.

At the end of the day, we got the best news of all and that is that he’d had no seizures throughout the day!

Tomorrow, we hope and pray that he will remain seizure free as he gets more and more of the pentobarbital out of his system, and that he will gradually get back more and more of his facility to move his limbs and breathe on his own.

Thank you for standing with us in this journey. 

-Megan

An Update as of 9/24/12

We are feeling encouraged this morning. Bob is down at a lower dose of the coma-inducing medication than he has been, and still no seizures. If all continues to go well, they will step him down to the lowest dose at 3:30 this afternoon, and if that too goes well, then he will come off the medication completely at 3:30 am tomorrow morning. Then they’ve told us that it will take two to five days for him to fully wake up. Already this morning, we are beginning to see glimmers of facial movements and even moving his head slightly.

We are praying fervently that we continue through this week with no seizures and also that we keep the three enemies of infection, clots, and bed sores at bay. Also pray for comfort for Bob as it is likely to be quite confusing and frightening for him as he first begins to wake up in a very groggy state. 

-Megan

Update as of 9/23/12

Last evening, after we left the hospital, Grandpa, Laurel, Evan, Michelle, little Everest and I went out to eat at the historic pedestrian mall here in Charlottesville. As we were strolling down the mall after a nice meal, I happened to run into Jay and Susan Perry, the friends who had located the condo we are renting and that has been such a blessing. They, in turn, had just happened to run into Claire and Howard Goodman, the friends of theirs who had offered to let me park Bob’s car in front of their house, which solved another of the small challenges in getting settled in a new place under these difficult circumstances. So, out of the clear blue, the four people who I had wanted to have the opportunity to thank in person for their kindness all converged in the same space and time! Those are the small miracles that keep happening that reassure us that there are larger forces afoot than those we can see and know.

We needed that reassurance this morning at rounds when we learned that Bob had had two seizures around six o’clock this morning. While that was a disappointment, it only meant making some adjustments to his medications and temporarily going back up a step in his coma-inducing medication. By this afternoon, he is back down to the dose that he was at overnight, so we are praying hard that he is able to stay at this level without any further seizures, and then successfully make the next reduction at 3:00 am.

In chatting with family members this morning, it emerged that four of us had had dreams of Bob awake and talking last night. We’re taking encouraging signs anywhere we get them!

Thanks again for all your prayers.

An Update as of 9/21/12

This was a day of collecting more pennies. It was a day when we kept the triple enemies of infection, blood clots, and bed sores at bay, and for those blessings we are thankful. We are grateful especially to the nurses and doctors whose hard work is behind those blessings, as well as to all of you who are praying for Bob’s well being.     

Throughout the day they continued to wean Bob off of one of the two coma-producing medications, and when that went well with no seizures, they began to taper off the second medication. They are taking this second medication down very slowly and cautiously, watching the EEGs to be sure that he is not starting to have seizures. If all goes well, they will finish this tapering by Monday afternoon. Then, because of how this medication gets stored up in his body, it will take another two to five days before Bob begins to wake up.     

At a consultation with the doctor this morning, he said that they do occasionally have people come back out of the coma immediately back to themselves again, but he cautioned that that was much more common of people in their twenties than in their fifties. So for those of you bold enough to pray for miracles, you can visualize an alert and ever-curious Bob, waking up interested to learn all that has transpired while he has slept.    

If instead, our hearts get broken once again by the return of the seizures, Bryn has assured me that while the mystery will perhaps deepen, we will not be out of options for paths to pursue.

-Megan