“Blessed be God in all His Designs.” – Fr. Solanus

(Thanks everyone for taking the time to visit this site.  It’s here you’ll find updated information on my Dan’s battle with T-cell Chronic Lymphocytic Leukemia.)

Early on Friday, May 15th, Dan’s condition quickly began to deteriorate. His organs were failing while his spirit still fought on.  No one saw it coming. His condition at 11 p.m. Thursday was stable and alert with the ICU planning for him to be removed from the ventilator on Friday. But it wasn’t meant to be – so horribly sad for our family and all of you beautiful friends.

It was with great heaviness that the doctor held my hands and gently told me that the time had come when they were prolonging Dan’s death rather than supporting his life. Nothing more could be done for him to recover from what was happening inside of him. I was faced with fulfilling his wish to never be sustained on life support.

Later that evening, Dan passed from this life to the next, joining our daughter Hanna in Heaven. Our family was at his bedside all afternoon to love him and say goodbye – for now.

The Christian philosophy of suffering in this life is that it actually brings you closer to God. I believe then that Dan is healed and whole and basking in God’s eternal love and glory. For a man who loved others so unconditionally and suffered so much, he is certainly worthy of  it. Yet at the same time, I cannot phathom my life now without my soulmate. Somehow I also know God will gently show me how.  I must put my faith, my grief and my pain into God’s hands. Please pray for me, Nick, Dave and our family. This will not be easy.

Patience is a Waiting Game (have I said this before?)

It’s Thursday and Dan is still in ICU and on the ventilator – I’m lead to believe that it’s a good thing for him, allowing him to rest another day. I don’t know what to think any more. The plan was to try to take him off the vent again today but a another test was ordered to scan his gallbladder and they thought it best to keep him on it. If the gallbladder scan sounds familiar to you long-time blog trotters, that’s because it is the same test he had a little over a month ago. They are checking for changes there that might shed some light on some of Dan’s challenges.

He’s got a lot going on but remaining stable. All that is going on within him is being treated so that is reassuring to me.  Everyone agrees Dan is due to turn the corner to Strong and Healthy streets.

Back in ICU

I haven’t had a chance to post because everything has been crazier since I decided to move home and go back to work (of course.) It was sweet for Nick and me for a few days, but getting word over the phone that your husband is getting sent back to ICU when you’re 300 miles away is a hell I don’t want to go through again.

Dan has been in ICU since this past Saturday, the 9th. (Guess where I spent Mother’s Day…) He has yet another blood bacteria that he is getting antibiotics to keep in control. Unfortunately this one has really affected his breathing and he is on a ventilator. Today they tried to take him off of it but after a few hours it was apparent that he wasn’t breathing as deeply as they had hoped. He was put back on around 4 and is resting comfortably – all vitals stable. It was disappointing and gut wrenching to realize what was happening, but like the nurse said, “…at least this is not a critical situation…” Tell that to the nuerons in my brain.

This is quite hard to take as you can imagine. I can’t imagine how Dan feels because I can’t talk to him. I’m holding on to what the various teams of doctors told me by day’s end, and that was despite this episode, Dan’s labs look stable, his vitals are stable and he just needs to rest and beat these bacterias and infections.  He is on the right drugs to do this.

Nutrition is a back and forth battle. While the ICU docs want to try tube feeding Dan, the BMT team advises IV method. They feel his gut is not healed enough to absorb the nutrition and it may only make matters worse. The IV method risks infection and is not as effecient as direct-to-the-gut method. So I asked the BMT team to go with the IV for a few days and then could we please try tube feeding…because we’ve been this path before and frankly it didn’t do him a whole lot of good…

Please pray for Dan and his healing. He needs a steady amount of good nutrition in order to get stronger and heal. We have to start with the safe approach and the IV. Hopefully this time it will lead to that loaded pizza he’s been craving since January.

Calling All Visitors…

Yesterday I received word that I will be returning back to work part time starting  Tuesday May 5th! THANK YOU SPRING MEADOW!!!! (You guys are awesome!)

So if you’ve been waiting for the chance to visit Dan, here’s your opportunity. I would like to try to set up a schedule of visitors for Dan while I’m spending more time away. It would do his spirit wonders and keep him from getting too lonely. If anyone out there can afford to visit during the week, let me know the date(s). If it is best for you to come on weekends, let me know the date(s). I am working with Amy the social worker here to reserve a room in Guest Housing for visitors but I need definite dates first. Guest Housing is just a short walk away and has secure parking. The room reminds me of an old HOJOs but it works in a pinch. I will even include directions to Greek Town, Hockeytown Cafe, Cheli’s, Pewabic Pottery and other points of interest to make your visit to Downtown Detroit even more enjoyable than visiting the Penthouse at Karmanos. Oh yeah, there are casinos nearby too.    

If you would like to help us in this way, please email me at djlimbaugh@chartermi.net and let me know your availability, whether it’s one day or a few.  Please include a phone number too.  Just so you know what you might be getting into, Dan doesn’t need a lot of entertaining, just conversation with short naps in between. (Feel free to join in on the naps) So if you have a laptop or a good book, bring it along.  

My intention is to work Tuesday through Thursday and visiting Dan on weekends as much as possible. With Nick’s involvement in Tulip Time and his busy Lacrosse schedule, me getting down here will be difficult. Visitors would be welcomed – just not all at once! So please let me know when you might be thinking of coming down. Thanks!

And what about Dan…By now you all know this is the roller coaster ride from hell. So it should really be no surprise to anyone that we continue to go from one medical challenge to another.  This week his blood cultures have been negative for 5 days (GOOD!) which means they think they have the infections under control but not without suspecting that the mersa is hiding someplace in the body (SCARY!) so they are waiting and watching. Meanwhile…Dan’s THREE colonoscopy attempts from last week have enlightened the docs that his graph versus host disease is back in his gut (DAMNIT!) which means that he is not eating again until his gut settles and the medicine starts working. He’ll probably start back on clear fluids by tomorrow morning.  Because he continues to be on nutrition through his IV, his liver levels and sugar levels are whacked out. And guess what? I learned that bacteria feeds on sugar so thanks to the nutrition sustaining his body, the mersa has something to feed on too.

(Imagine the famous artwork THE SCREAM here…that’s me.)

So that’s what is going on with Dan under the surface that I know of. He is working as hard as he can to do the physical and occupational therapy but he is still extremely weak – much stronger than two weeks ago but yet so frail. Once the medical stuff backs off and stabilizes, he can focus on just the physical – but it will take awhile. And as we know already, timing is everything. He’s got to get the higher hand on that damn mersa and slap it out of his system sooner rather than later.

We continue to be grateful for all of your support and comments. Dan loves it when I read him your notes! It’s the little things that make our day! Thanks!

To Go Fast, Row Slowly

These were positive words to live by earlier this week when I needed to realize that Dan is not jumping out of bed and running to the exit door any time soon. Today new blood cultures show another bout of infection – perhaps something similar to what he had in March. It wasn’t the news I expected to hear today. This is the second positive culture to show up since Tuesday although the first one seems to have disappeared (dare I say?) Now this new one is yet to be determined exactly what it is and how it will be treated. Dan says they are wrong. He has no infection in his blood. He feels fine. Then he went to sleep.

So the good news is that he isn’t showing any symptoms of infection – all his vitals are great. The infectious disease doctor who busted in the room this morning to deliver the incomplete report had horrible bedside manners and was adamant about how horrible this bug is…whatever it is. She told me to look it up on line to find out more. I told her, No I will not. We’ve been through hell and I’m don’t need to freak out sooner than I have to…

After succumbing to a weeping jag while talking to the social worker about it, our doctor came in and apologized for her behavior. He said let’s just wait and see about it – it’s obviously not bothering him (Dan) in any way right now.

So again we wait and pray and hope for the very best.  I can’t imagine going through anything like the month of March again. I declare Dan won’t have to!

Also this week, in the spirit of believing in forward progress AND LIVING IT, I decided to move back to Holland and go back to work part time by the first week of May.  (Details are still being worked out and as we’ve learned so far, anything can change.) It has become obvious that Nick really needs his mom back. Dan knows what he has to do on this side of the state. I’ve got a job that I cannot ignore much longer. It is taking every ounce of courage to do this but after talking with some of the staff here, it is certainly not an unreasonable move. They understand how hard this circumstance is and are offering to do what they can to support Dan while in their care. They just can’t promise me a date he’ll be released to rehab. So I have to move on with life for our family’s sake - earn money, be a mom and come back here on weekends to be with Dan. It’s not what we wanted or ever expected would happen but something’s got to give. Perhaps if I move forward, Dan will follow – with no infections, bacteria or cancers attached!

Waiting…

“The waiting is the hardest part. – Tom Petty

While Dad continues to improve a little bit every day, now comes our test in patience.  It’s a long recovery process when it comes to Dad having to slowly get his strength back, all while trying to get his stomach used to regular food again and begin his physical therapy.  He should be sitting up on the side of his bed (with assistance) about 4 times a day, but some days he just doesn’t have the strength.  We were told by his therapists to be sure to support him, but don’t push him.  While we can’t force Dad to do his exercises, we also made it clear to him that, while what happened to him before was out of his hands, it is now back in them.  We want him to show us just how sick he is of being in the hospital (because we know damn well he is!).

The best news is that the kidney biopsy he had last week came back negative for any kind of abnormalities.  Basically, he’s just backed-up, for lack of a better term.  He’s got some sludge in him that will hopefully clean itself out naturally once he starts eating regularly.   He remains in quiet, decent spirits and converses with us when we are with him, but he looks quite frail and old.  He has a long road ahead of him, but everyone is confidant he can do it once again.

Dave A. Limbaugh

Small Improvements Add UP

While we are still waiting to find out what the doctors want to do about Dan’s liver and gallbladder, he is making physical progress on his own! He is more alert than a week ago and doing more with his body. It’s been wonderful to see him improve little by little, day by day. Today the OT had him sitting on the edge of the bed for 25 minutes – I missed it, but she was quite impressed!

I spend a good part of my day helping Dan with  exercise every other hour, depending on what’s going on. Hospitals are notorious for interruptions and often what we plan on accomplishing is overridden by hospital karma. Every time Dan tries to take a nap someone pops in for one reason or another. Just now the dietician came in with a special treat for Dan – her own homemade no sugar, low carb chocolate chip peanut butter cookies! She’s a sweetheart for finding a quick solution to one of Dan’s biggest cravings – chocolate! He can’t have milk chocolate but a little dark chocolate is okay with the doc. So he’ll be scarfing this down with some soy milk later! Oddly enough, he’s been hooked on watching the Food Network almost daily. When I ask him if he’s learning how to cook for me he says, “No, I just like looking at the food!”

His diet was bumped up a level again today – allowing him more of a selection of foods to eat. I think it’s the food that’s been making the biggest difference with his recovery. Every since he’s been able to start eating, he’s been gaining awareness and stamina. Today was the first time I was able to explain to him what he’s been through the last several weeks and he was able to comprehend. It was overwhelming for him to realize March is gone and he has no recollection of  the time. He was shocked to hear he was in ICU for two weeks on a ventilator and on continuous dialysis. It was emotional for both of us. Yet at the same time, I told him we can’t dwell on what was; we have to move forward with care and determination. If I know Dan, he’ll be more motivated to get the hell out of here sooner.

Until then it looks like he’ll be getting a liver biopsy tomorrow to rule out graph vs host there. It’s a painless procedure that only requires a local antesthetic. Thank goodness!

Meanwhile the gallbladder is huge and they may decide to either drain it or take it out

It is filled with sludge from him not eating and laying around for a month. I sure hope they don’t have to operate – enough is enough and we’ve had enough!

(By the way, this entry was by Janice Limbaugh – I don’t know how to edit the author.)

It’s Always Something

While Dan continues taking daily baby steps to being rehabilitated, a few other challenges loom in the shadows. We’re waiting (naturally) for complete CAT scan reports on his lungs and his liver that were done in the last 24 hours.

Back in ICU, the blood infection had infiltrated his lungs and showed up as bacteria nodules. Even though that  now looks improved, there’s something not quite normal about his lungs, and the docs need to review it more closely to see if it was something there before – what exactly, I have no idea.

Meanwhile Dan’s liver is misbehaving by increasing its function putting out higher enzyme levels throughout his system – if that makes any sense. It is causing him to have a yellow-tint in the whites of his eyes and his skin to look a bit jaundis.

Other than that, he’s doing great! He is able to eat banannas, rice, toast, apple sauce, broth and other ‘clear’ liquids.  He is more alert and determined to do the taxing physical therapy excercises. Every day since Monday, I’ve seen him improve over all and it is so encouraging. Yet every time they order a test, my heart goes to my throat and my mind starts reeling. It must be post-traumatic stress disorder because I go into auto-panic!

Then there are moments like the one that just happened: I heard Dan struggling and when I looked over my shoulder, he was putting his knit hat on his head using both arms and hands. It took some finessing but he did it!  It is so wonderful to see him able to move again and do a little more each day. I don’t want anything to take that away. No more setbacks just forward progress. My patience is growing thin; I want us to come home!  I miss my husband, my son, my pets, my friends, my job…it all hits me as being so insane – and it really is. Yet I realize we didn’t get this far overnight and I must find my patience once more. Afterall, baby steps can be extraordinary.

GREAT NEWS DAN FANS!!!

Our patience and prayers have finally paid off because today we were told that since March 21st, Dan’s blood bacteria culture has been NEGATIVE!!!!!!!!

(PAUSE HERE FOR GREAT REJOICING!)

He received his last dose of the antibiotic that suppresses his white cell count this morning! This means his overall blood counts should start to rise and stabilize over the next few days. I hope to see a more alert and mobile Dan.

BUT WAIT!  THERE’S MORE…(And don’t we deserve it?!  Heck yes!!!)

The biopsy of Dan’s colon showed NO signs of the graph versus host disease but the CMV virus which he’s had for some time. This is good news because the CMV will be easier to get under control with the least complications! Because of this development, Dan is allowed to start a liquid diet. This includes Popsicles. So after a month of not eating, Dan ate two Popsicles in an hour, holding them himself! It sounds so simplistic but after the ICU scare and seeing how weak and de-conditioned his is now, this was one of the greatest moments for me since he was taken off the vent!

GO DAN GO! 

I’d also like to send my heartfelt thanks to all the people involved in putting on the most fantastic BIG LIMBAUGHSKI in history! Although I was hesitant to go due to exhaustion, it provided me the best medicine that I could ask for - HUGS and LAUGHS and lots of SMILES from friendly and familiar faces.  The positive energy that filled that hall is still with me today and I’m doing my best to channel it all to Dan. As son David said, saying ‘thank you’ just doesn’t seem to sum it up. To all of you who contributed in any way, shape or form – bless you, bless you, bless you! Your generousity of love will be with us for the rest of our lives. After all, without the support of friends and family we could never make it through this – and we are – we most definitely are!

GIT-R-DONE!!!

All my love,

Janice

The Big Limbaughski

(Brother Dave here…)

Tonight is the Big Limbaughski fundraiser in Grand Rapids. Janice has driven to Holland to pick up master Nick; I’ve headed east and am in Dan’s room. He is indeed back on the 10th floor, out of ICU. Yea! We chatted for a big a bit then he fell back asleep. It was great to hear his voice and see him smile at my lame jokes. (“Doctor, will I be able to yodel again?” “Why, certainly, with time.”  “That’s great, I’ve never been able to yodel before!”)

I’ve got the PC and the Skype cam all set up, waiting for a call back from Kevin at the Polish Hall…

Kevin got us Skyped. Dan watched the swirling mass of people, was impressed. Because there were so many people – and the band – we couldn’t hear more than a big swooshing noise. But it was still impressive! The call dropped four or five times but we were able to reconnect. Dan said he wished he could have been there – don’t we all!

Tomorrow we’ll hear how much moolah was raised.  I have a feeling that with the great turnout it will be a goodly amount, which I’m sure will be a great relief to Dan.