When the Miracles Run Out

        Our family has been blessed with miracles for many years.

        Just looking at Robert’s run, he had a seizure while swimming when he was 16 years old and somehow survived after being in a coma for three days. He survived terrible falls (including one onto a lamp which burned his arm while he seized for god knows how long), concussions, an infection in the Deep Brain Stimulator when he was in a trial for it at UCSF, countless seizures and seizure clusters, two rounds of COVID pneumonia, a ridiculous amount of aspiration pneumonia, and, as recently as June, a severe case of pancreatitis brought on by gallstones.

Along with being the Bingo King he was the Comeback Kid.

Always pulling out a miracle.

When Richard had his own miracle of surviving a “widow maker” cardiac arrest, I started to feel a little guilty about our abundance of miracles. (Of course, if you know me, this comes as a surprise to absolutely no one.) I definitely got the guilt gene.

I loved the miracles though and was so grateful for each and every one. Logically, I knew that one day the miracles would run out. Robert has been so sick that doctors would pull me aside and solemnly tell me “I’m a little worried about him.” I told them that he always pulls through. I would worry too but would also allow myself to remember the miracles.

Robert always had one up his sleeve!

This last week, Robert seemed like himself. We went to his neurology appointment and his doctor and I talked about how amazing it was that the facility only reported one seizure last month! Yes, they could have missed some but they certainly weren’t missing 40+ a month like he was having when he lived with us just two years ago. Dr. Kennedy has worked with Robert for years, carefully adjusting his medications to see what might help without causing terrible side effects. He and I talked about how the Deep Brain Stimulator was helping along with the new medication Robert was on. Dr. Kennedy was even able to successfully slightly reduce some of the medications over the last several months, especially the ones that caused Robert’s ammonia level to skyrocket and make him sleepy.

Dr. Kennedy said eventually Robert could be moved from appointments every three months to six months! It was a great visit and it was not lost on me that this was Robert, again, being granted a miracle. The goal of zero seizures was no longer an impossible dream! It was within sight!

On Thursday, Robert enjoyed playing the card game of Kings in the Corner (his favorite). Pattae, his wonderful caregiver, shared that he won multiple times which was actually pretty typical.

Friday morning, though, I got a call that he was being sent to the Emergency Room. I was completely confused because I had seen him a couple times already that week and he was fine. Didn’t seem to be sick at all. I can usually tell when something is working on him but there was nothing.

    He was sent to the hospital unresponsive and by the time I got to the hospital, he was intubated and they were working to stabilize his blood pressure. They checked for a stroke, they checked to see if he was in status epilepticus, they ran so much bloodwork they ran out of good veins in his arms and had to use his leg.

    Robert quickly landed in the ICU, ended up with four “pressors” to get his blood pressure up and started with one broad spectrum antibiotic but ended up with four!

    He got so sick so quick. He was in septic shock.

    They finally figured out he again had pancreatitis. This time, it was “necrotizing pancreatitis” which in normal person’s lingo is “no bueno.”

    I followed along in his chart with the lab results and consulted Dr. Google or Chat GTP when I had a question. I looked up one of his liver enzymes which was in the thousands and was met with “you must have a typo.”

    Family and friends came up to see him, pray with him and say their goodbyes, just in case.

    Both nights he was in the ICU I was called to come to the hospital since things were not looking good. The second night, the doctor told me that he was not responding to the medications and his belly was swelling (surgery had been consulted and that was not an option because of how sick he was) and his organs were failing.

    Robert had remained mostly unresponsive the entire time and this was without sedatives. His body was just too tired to engage. I got one or two hand squeezes but not much more than that.

    We had to make the awful decision to remove his breathing tube.

    There was not going to be a miracle this time. Robert was not going to recover.

    I asked for the hospital pastor to pray with him before we did anything. I’m not really religious but Robert is and I wanted him to know he was going to heaven to see our parents and step-dad and Richard’s mom.

    Robert died quickly and peacefully with Richard and I by his side, holding his hands.

    I have spent today notifying service coordinators, his Day Program, the transportation company we use and others and gathering his belongings from his facility and seeing Pattae. With every phone call and text and every visit with the staff at the facility, we were met with tears and the same comments: We are heartbroken. Robert was special. Robert won over cranky residents. Robert will be deeply missed. Everyone loved Robert. Robert spread joy wherever he was.

    After hearing the same comments over and over, I realized Robert had one more miracle after all and that is all the hearts and souls he touched while he was here.

    Miss you, little brother.

 

Ask and You Shall Receive!

When New Home told me they no longer had television I wondered how Robert was going to fulfill his spiritual needs. Robert is in the habit of watching sermons on television and will actually watch a couple of hours’ worth on Sunday morning if he has the opportunity. He always wears a white dress shirt on Sunday, keeps his Bible close to him along with a pad of paper and pen so he can write down each verse referenced in the sermon. Robert does this whether he is watching a sermon on television, in person or at a funeral. He has several pads of paper filled with Bible verse references.

Sometimes I can get too caught up in the antics of New Home and end up being a little down in the dumps or extremely frustrated with them. New Home promised weeks ago to reinstate television and I keep hearing “it’ll be any day now” but nothing seems to be happening. The residents are still watching the same movies over and over again (luckily, the DVD player works). Robert had a few movies of his own that he shared with the others. Still, how many times can you watch Annie?

This latest problem of not having television is less of a problem now thanks to the generosity of a few churches.

At a recent meeting with New Home, it was suggested that churches might be willing to donate a DVD of their sermons to Robert. Excellent idea! I researched several of the big name churches who broadcast on Sunday to see if they had an avenue to request a donation of a DVD or just had an email address listed on their website. A few churches didn’t have a person to email directly but had a form to complete in order to ask a question or make a request. Many of these links didn’t work which was a little startling. (Hopefully, someone who is in dire straights doesn’t decide to email these particular churches. “I’m so sorry but God’s internet isn’t working right now!”).

To those I could get through to, I requested a DVD of a sermon and promised a mention on my blog if they were willing to donate the DVD to Robert. I explained his situation and asked for whatever they could send. One church turned me down and instead asked me for a donation.

Not letting this discourage me, I sent off a few more emails. Two churches responded positively and have already sent a few gifts to Robert! The Joel Osteen Ministries of Lakewood Church in Texas, sent Robert a DVD entitled, “You are an Overcomer.” Boy, isn’t that the truth! I told Robert he was sent a DVD but haven’t given it to him yet. He gave his standard understated response of “That’s nice” when I told him about it. He may not be able to ooze enthusiasm but he will watch it intently (and probably several times), Bible beside him with notepad in hand.

InTouch Ministries also generously sent Robert two CDs with sermons by Dr. Charles Stanley. When Robert visits us, he watches Dr. Stanley’s program so will really appreciate having these CDs to listen to.

New Home may be on week 4 and counting of trying to get their television back on but while they move at a snail’s pace to get the necessary approvals and wait for the cable guy, a few churches have come to Robert’s rescue and made him very happy. For that, I am extremely grateful!

Seeing the Miracles

Friday started off with one of my cats jumping on my bed to wake me up and then proceeding to pee on my foot. Thanks, Milky Way, I’m awake now.

One could reasonably assume this was the worst part of my day. Don’t be so hasty, it was not. Expensive car problems, slipping and falling flat on my face at work and handling more complaints than normal at work vied for the top spot. Goodbye money, hello bruised knee (and ego). TGIF, indeed.

Saturday was completely different (thank goodness!). I was able to spend time catching up with a few blogs that I love (http://www.atticusuncensored.com/, for one) and a website that I could spend all day on (http://www.caregiving.com/). Both have discussed miracles in recent posts (http://www.caregiving.com/ even has a “miracle meter” to keep track of miracles people experience).

Miracles come in both big and small packages. Sometimes they sneak in between some crappy days and could be easy to overlook if you’re not paying attention.

Saturday morning continued with me catching up on tweeting. Tweeting? Really? I know – who knew this person who can barely turn the television on (and will just about give up if there’s the added component of figuring out how to remove an x-box from it), would love to tweet! (A miracle in itself).

After reading and tweeting and passing out +Ks to people (to help with their Klout score, of course!), Hubby and I picked up Hubby’s Mom and Robert and spent the day going to lunch and the movies.

The day flowed perfectly. Robert’s bathroom breaks fit into the lunch and movie schedule better than if they had been planned. We were not late for lunch (we were meeting Hubby’s brother) and had plenty of time to visit before leaving to make it to the movie and get settled in before previews. We brought both the walker (to be used at lunch) and the transport chair (to be used at the movie) which helped tremendously. Robert didn’t mind being pushed around at the movie and he maintained his independence by walking with the assistance of the walker the rest of the day. Hubby’s back was bothering him (the change in weather doesn’t help his pain at all) but he didn’t let that get in the way of a good time. Hubby’s mom enjoyed a day spent with us that didn’t involve hospitals or doctors (she’s had more than her share this year).

After lunch and the movie, we picked up new reading glasses, other personal supplies and pens for Robert at a nearby drug store and went home to eat dinner. The day ended watching a come-from-behind victory from my favorite football team, the Nebraska Cornhuskers. Hubby, Robert and I whooped and hollered as they exploded in the 2nd half of the game, clearly leaving Ohio State to ask, “what the heck just happened?” Woohoo! Go Big Red!

It was a pretty awesome day full of little miracles. Although, not getting peed on counts as a pretty big miracle if you ask me.

I hope your day is full of miracles both big and small!