What a 100th day!

Let's just start with it was a great day!

I got a good night of sleep albeit a late night or early morning to sleep and got a few things done here in the room before getting to Tracy's room.

When I got to her room I read the following devotion that was given to us by the DeFluri's.

Here it is.

Open Your Heart



When I am afraid, I put my trust in you. 
Psalm 56:3 ESV



         How did Jesus endure the terror of the crucifixion?  He went first to the Father with his fears.  He modeled the words of Psalm 56:3: " When I am afraid, I put my trust in you."



         Do the same with yours.  Don't avoid life’s Garden of Gethsemane.  Enter them.  Just don't enter them alone.  And while there, be honest.  Pounding the ground is permitted.  Tears are allowed.  And if you sweat blood, you won't be the first.  Do what Jesus did; open your heart.



And be specific. Jesus was.  "Take this cup," he prayed.  Give the number of the flight.  Tell him the length of the speech.  Share the details of the job transfer.  He has plenty of time.  He also has plenty of compassion. 



He doesn't think your fears are foolish or silly.  He won't tell you to "buck up" or "get tough."  He's been where you are. He knows how you feel.



And He knows what you need.



From Max Lucado's "Grace for the Moment"

Needless to say that was something I needed to hear.

I had contacted the National Institute of Health (NIH) on Monday to see if Tracy would be a candidate for their Undiagnosed Disease Program.  Tuesday I heard from Patti Crowe who had provided me with the NIH lead from Dr. Petrozzi, a family friend of hers.  I am so thankful for her efforts as this lead has also lead to a direct contact at NIH, that may be of help getting Tracy there if needed.

  

Then there was more good news.  Dr. Paretti was back on our case!  Sorry Dr. Kim, but it is great to have the doctor that started the whole Mayo thing back with us.

He basically said that he agreed with Mayo's request for more testing and not transferring her.  He also agreed that we should probably start with treatment for paraneoplastic syndrome which was what the test they requested were for.  He had already written and ordered for the treatment, intravenous immune globulin (IVIG).  He said that we could wait until the results came in or we could start it today.  He felt that we had nothing to loose, as the side effects would be minimal. 

They would do a test dose of the IVIG and if there were no reactions they would follow up with a full dose later in the evening.

There were no reactions and Tracy actually seem more at ease to me.  She was still agitated when turned but otherwise seemed much more relaxed .  So about 7PM they started the actual dose and all went well as she was just finishing up the first dose when I head back to my room.

I did some Googling and found many similarities to Trace's symptoms, time for the disclaimer, I am not a doctor but the similarities were striking. 

As you know we have Great Faith in God and I truly am feeling great comfort as I head to sleep to night. 

So, God has given us "Grace for the Moment", Grace for a lifetime!

God Bless and "Never Give Up... Never Ever Give Up!"

Rob

Day 100!!!

Today is day 100 of hospitals.  I know it probably sounds odd, but I am so thankful to God for those 100 days!  I know He is in control and will see us through. 

Well I got a little vacation from blogging, thank you Drew.

I was very frustrated with the Mayo Clinic situation.  I was hoping they would be the answer for us.  As I have calmed down I now realize they could still be our answer, as Mayo requested that U of M do some tests that hadn’t been done and that the testing will be done at Mayo.  I know that God is in control and I think this was His answer, as I was worried about being so far away from Drew and now we won’t be any further apart.

Sunday was a good day for Tracy too.  I have met a family from another unit and the son (Cory) came down to visit on Sunday afternoon.  As Cory came in he said hello to Tracy and she said hello back to him and asked him how he was.  Then Cory said that he was fine and asked how she was?  Tracy responded with “I’m so, so”.  And Cory said that she looked really good, which she did.  Tracy then said thank you to him.  Drew and I were astonished with what had just happened. 

It had been a difficult day for me up to that point.  I hadn’t slept well Saturday night, which always leads to rough and emotional day the next day and combine that with Drew leaving too.   But that short little conversation with Cory cured a lot of my emotions but not my sleeplessness.

Drew left around 4:00PM to head home for the week and I headed back to the hotel to rest for a while.  I returned to Tracy’s room around 6PM and stayed and read to her until around 9:30 that night.

Sunday night was another sleepless night for me as I couldn’t get to sleep and when I did, it was short lived as I woke up around 4:45AM and didn’t go back to sleep until 6:30, then slept until 9AM.  I ate some breakfast, paid some bills and got some work done before heading over to Tracy’s room around 11:30. 

She was sound asleep as she had just finished an hour of physical therapy.  I relieved the sitter for lunch and then waited for another hour for Dr. Kim who wanted to meet with me to go over Tracy’s history and possible treatments for her.  She was late in showing up so I went to lunch only to get called back up to meet with her.  I have been very impressed with our past two doctors and Dr. Kim now makes it three in a row!

She is a very considerate and wants very badly to help Tracy.  As we finished talking Kristen our Occupational Therapist showed up around 3PM.  She worked with Tracy until around 4PM. 

Our sitter left right before Kristen showed up, so I became the sitter with Tracy until 7:45PM, when I was relieved by one of the nurse’s assistants for dinner.  I read some to Tracy but she mainly slept.  I can’t really blame her after all the workouts she had today.

I returned around 10:00PM and stayed with Tracy until 11:15.

Thanks again for everything that all of you are doing for us!

God Bless and “Never Give Up… Never Ever Give Up!”

Rob

Drew's Blog

           Hello everyone.  It’s Drew with the blog tonight, and I know its been a while since I’ve done one, so I have a lot of thanks to give.  So many people have done so much for my dad, and me and we really appreciate it so much.  I know now that I have many friends that are there for me, and lots of people that are willing to help me out.  I’ve had too many meals to count and occasionally I’ve had to have friends over to help me eat all of my leftovers.  They clean the fridge, and I make them help me clean the house before they leave, so we both win.  So I’ve literally had enough generosity given to me, that I have to share it.  I’ve had so many people give me gifts of money and invitations, that I’d love to name them all, but I’m not sure that I could even remember them all.  So thank you to all that have provided your help and prayers.

            Well my dad left off on Wednesday and I’ll take it from there.  Thursday was a very slow day for Mom; she slept through most of it.  My dad said that there was a nursing situation, and it caused him to be a little late getting back out to Troy that afternoon.  Mrs. Rohloff stayed in Ann Arbor for the night so that Dad could come to my National Honor Society induction.  Before the ceremony, we went out to dinner with the Harfields, the Harrisons, and the Paquets.  After the ceremony, we went next door from Athens to St. Anastasia for a Novena, hosted by the Pales, in order to pray for Mom, as Dad mentioned in the previous blog.  These will be held nightly through next Friday, from 9:00 to 9:30PM. Dad and I were very excited to see some of our friends there that night, including some of my close friends Ian, Patrick, and Stephen, and my girlfriend Taylor and some of her family came along with us.  I know that since then, many others have gone every night, and we all really appreciate it and we definitely feel the prayers.

            Friday, I arrived in Ann Arbor at 7:00PM, and my dad got there earlier that afternoon.  Mrs. Collins also visited mom earlier in the day too.  When I got to my mom’s room, she smiled at me, said hi, and responded to me in a way that I haven’t seen in 15 weeks.  There’s no doubt that there’s been immense improvement since even Monday, and she reminds me a lot of the very first day at Beaumont when she got her very first dose of Ativan.  I almost feel like Ativan is the only thing still separating us from our mother and wife.  We also were told on Friday that the UofM doctors and the Mayo doctors were going to have a conference call to determine what was the plan of action. 

            Saturday morning we woke up (slowly) and went to see Mom, who was just as responsive as the night before.  She still isn’t making all that much sense, but we know that Ativan has that effect on her, and it’s still a great improvement from just a few days ago.  We received news from the doctors that Mayo says that UofM has done everything they would do with the exception of three tests.  We’ll be running these tests in the coming days, but it’s safe to say that we will probably not be going to Mayo.  I think my dad is more comfortable about this, because that means they can stay closer to home and the support. 

            Please continue to pray for us, we appreciate everything you’ve all done.  Sorry that this was such a short blog, but it is very late and Dad and me are almost dead tired.  Thanks once again to everyone and all you’ve done for us.

Drew

Hold the Mayo? Not anymore!

Well the paperwork is in to the Mayo Clinic in Rochester Minnesota and the insurance company has approved us to go!  Now we wait. I know, all in God’s timing.  I just wish he wore a watch and it was on the same time zone as mine!

I forgot to mention in the last blog that we had a visit from our non-legally adopted daughter Kaity Marko on her way to Chicago.  It was nice to see her and have her spend the afternoon with us.  She is headed to Africa this summer for six months as missionary.

Saturday was a day of sleep for Tracy.  I felt sorry for Val and Janice who had come in from out of town to visit, as Tracy was so out of it.  I am sure going back to the 4mg a day of Ativan was the reason for her sleepiness.  But we all made the best of it.  We had other visitors Saturday too, Deann Rohloff, and Keith and Cassie Immink came by too.  I think there were 7 of us in Tracy’s room at one time and a nurse or two too!  Janice and Val gave Tracy a manicure and a late night pedicure.  We also sneaked in dinner at The Original Cottage Inn Restaurant.  Boy is that some good pizza!  The company was even better!

I think Janice and Val got maybe two hours of sleep Sunday morning before they left.  Val had a 5:45AM flight, so Janice and her left around 4AM, believe it or not I also was awake.  I thought about getting up to say goodbye to them, but decided I had better just stay in bed and try to get some more sleep myself.  But at 5AM I hadn’t gone back to sleep so I took another sleeping pill and slept until 8:30.  By the time I had eaten and showered they both were home already, Janice in Cincinnati and Val in Houston.

Tracy slept the rest of the morning and I stayed with her and read some.  Dr. Paretti loaned me the book Doctors Mayo, it is about Dr. Mayo, who by the way, graduated from the University of Michigan.  Tracy woke up in the afternoon and was very talkative.  I really enjoyed speaking with her, it was a lot of nonsense, but we were talking.  She is getting her voice back and it is much easier to understand her.  I asked a lot of questions and for the most part she responded to them, sometimes appropriately, sometimes not.  I just wished she had been that way while Janice and Val were here.

I missed having Drew here this last weekend as he was away at our Church’s youth winter retreat.   He had a great time!  It was the first time I had missed the winter retreat in the past six years.  But they brought it to me, as I received a phone call about 1:30PM asking if they could put me on speakerphone and hear a bit of our journey and pray for our family.  It was AWESOME.  Our God is Good!  All the Time!!

Monday morning came and Dr. Paretti sent off the first set of paperwork to start the communication with the Mayo Clinic.  It was also the last day for Dr. Paretti to attend to Trace.  I will miss him. 

It was another good day for Tracy as she was again very talkative and attentive to me.  I began to wonder if Mayo was really necessary or not?  The conversations were much the same as Sunday again.  But I loved hearing her and seeing her facial expressions and listening to her laughter. 

Debbie Barlow came out late in the morning and spent about an hour or so.  Then Drew and his girlfriend Taylor Tralka showed up around noon and we went to lunch at guess where?  Angelo’s!  They spent sometime with Tracy and did some of their homework together in the cafeteria.  I took them to dinner and sent them on their way around 9PM.

I slept so, so on Monday night.  When I called early Tuesday morning the night nurse said that Tracy had slept well and was still asleep.  So I went back to sleep myself until around 8:30AM.

After I got up I did some work, and paid some bills and got over to Tracy’s room around 11AM.  When I got there she smiled at me and kissed me but something wasn’t right.  She seemed really tired and somewhat sad.  I asked her if she felt ok and she said “so, so”.  Impressive with response, but concerning because I could see she wasn’t feeling well.  She was very lethargic and sleepy.  About 4PM a nurse’s aide came to take Trace’s vitals and it was evident that she wasn’t feeling well.  High blood pressure, high heart rate and a high fever were present.

Our new doctor, Dr. Nichani was paged and came immediately and ordered some different antibiotics and increased her fluids and stopped her tube feeding.  It was assumed that the bolus feedings were probably the cause of the increased heart rate and high blood pressure.  But they were not sure what was causing the fever.  There was some concern that it could be an infection from her PICC line, which was pulled and replaced again on Monday.

By the time I headed back to the room everything was good except she was running a low-grade fever.

I slept pretty good Tuesday night just woke up early again, so I called to see how Tracy was and found out that she had slept really well and was still asleep.  So I took some cold medicine and set my alarm for 8:30AM.

After breakfast I made a few phone calls and did some more work and headed over around 11AM to find Tracy in really good spirits and Dr. Nichani in the room.  He had said that he had heard from Priority Health and that we were cleared to go to the Mayo Clinic!  Now we had to wait to hear back from Mayo.

Here is where more prayers are needed.  Thursday night is Drew’s induction into the National Honor Society, something Tracy has pressed him about since I think he was 2 years old!  I am so sad that she cannot be there to see him and I am so concerned that once Mayo says it’s a go, we leave immediately.  And if it is Thursday, what do I do?

I am concerned, as I do not know how we are going to get there.  I do know that Tracy will go by ambulance, not by air.  So do I ride with her, like I did from Beaumont or do I drive myself?  I was told that I would not be able to keep up with ambulance; I guess they would be speeding and I wouldn’t be able too?  I don’t even know if a car would be needed once I am there.  It appears that there are plenty of hospitals around the hospital but only one that would be similar to the Med Inn, where I am staying now.  There are just so many unknowns, huh, Trust and Obey, because there’s really is no other way!

It could also end up that we don’t even go to Mayo and stay here with Mayo consulting the doctors here, or God forbid they don’t accept us.

It was really appropriate that today I read to Tracy about how “God’s Promises are an assurance God gives his people so they can walk by Faith while they wait for him to work.”  Read that again will you?  What comfort.

Tracy and I had a candle light time (dinner for me) with the few good roses left from Valentines Day.  It was nice, just the two of us.

She is resting comfortably and I am thinking of closing and heading to my room.

If anyone know any answers to my concerns or can shed some light on what to expect from our forth-coming Mayo visit, please email me at rbowden@quality-hardware.com .

God Bless and “Never Give Up… Never Ever Give Up!”

Rob

As I went to post this blog I checked my email and was completely overwhelmed.

Dear Friends of Tracy,

Martha and I would like to invite you to join us in a 9 day rosary novena for Tracy Bowden, starting this Thursday, February 23rd and finishing Friday, March 2nd.  We will meet 9:00 - 9:30 PM at the Marian chapel inside St. Anastasia church (4571 John R, Troy).

For our non-Catholic friends, the tradition of praying a novena for a special intention like the recovery of Tracy is modeled after the nine days that the apostles and Mary gathered in the upper room after the ascension of Jesus as they prayerfully waited for the coming of the Holy Spirit. For this novena, we have been inspired by this weekend's Gospel reading of the healing of the paralytic (Mark 2:1-12) where Jesus healed the paralytic because of the faith of his friends. We will start the novena with that reading from Mark, then pray the rosary with appropriate Mystery for that day.

If you are like us and don't have all the special prayers of the rosary memorized - no worries! We will provide handouts with all the prayers. Or, if you like, simply join us in silent prayer for Tracy. If you can't be there in person, please join us in prayer from wherever you are.

Please forward this to anyone else who knows the Bowdens and would want to join us. Feel free to bring your kids (ours will be there). If you have any questions, please call (248-879-2357) or send a note.

Let's storm the gates of Heaven together for Tracy!

John and Martha Pale

God willing I too will be attending as I will be home to celebrate Drew’s induction to the National Honor Society.

John and Martha I can’t thank you enough!

Again, God Bless and “Never Give Up… Never Ever Give Up!”

Rob

The End of Week 11 at U of M

Sorry I haven't updated you in awhile but it has been a bit crazy for me.  

Tuesday treatment, number 23, was good and was Tracy's last.  

They also scheduled Tracy to have surgery to put in a feeding tube.  This would allow her body to have the sensation of actually eating a meal.  It also gets that stinking tube out of her nose, which was driving her crazy.

However anesthesia with the ECT treatment in the morning and again with the feeding tube placement, along with a doctors’ meeting at 4 PM, was too much in one day, for both Tracy and me, so I put a stop to the feeding tube for Tuesday.

My brother Ron was the first to show up for the doctors’ meeting, another five-plus hour trip for him (his second in two days). Next came Dan Longo, who had an hour trip, followed by Lisa Harrison, who brought Drew along with her.  The meeting started with the five of four doctors, two social workers, the nursing manager and us.

The meeting went well.  All of the doctors stated their positions and allowed us to ask questions.  The doctor that had said they were through and didn't know what else they could do changed his tune.  All of us had questions for the doctors and I feel they answered them honestly.  I was just kind of awestruck by the one doctor's change of attitude as he was now suggesting that maybe Mayo Clinic, Cleveland Clinic or John Hopkins could be second opinions (actually third).  However there was a consensus that we would stop the ECT treatments and slowly decrease the Ativan (which at the time was six mg per day).  They called it a watch and wait.  

I left the meeting feeling better, but somewhat hopeless.  It was really great to have friends and family here supporting me.  Drew once again made me so proud, as he asked some very thought-provoking questions.

Dan and Lisa returned to Troy to celebrate Valentines Day with their families, while Drew, Ron and I headed back to Tracy's room before dinner.  Thanks again to you guys for giving of your time.  FYI - dinner was at The Blue Tractor and their Baked Mac & Cheese is awesome.  But stay clear of the Deep Fried Mac & Cheese.

We then met Dante Burchi about half way between Ann Arbor and Troy so he could get Drew the rest of the way home.  Thanks Dante.  It was so nice to have Drew here, he is such a comfort to me; Tracy and I are so blessed by him.

By the way, Tracy was not forgotten on Valentines Day; I got her a dozen roses, which made her smile.

Tracy's feeding tube surgery was scheduled for 1 PM Wednesday, but Ron and I were awakened at 7:15 that morning by a nurse saying that she thought I wanted to be with Tracy before her surgery and that it had been moved up and they were already there to take her down.  So out of bed, clothes on and I was off to catch up.  I arrived at Trace's room just as they transferred her to the transport gurney.  We arrived at the pre-op room around 7:30 where we waited and waited.  Ron worked on things in the hotel room while I waited alone with Tracy until Sarah Harfield and Debbie Paquet showed up with cookies, candy and lots of love!

They finally took Tracy in for the surgery around 1 PM and told us it would be about an hour or so.  Ron and I headed back to the room, more work for him and finally a shower for me.  Debbie and Sarah went and had lunch.

We rendezvoused back in the waiting room for Tracy around 2 PM only to wait another 45 minutes before they let me in to see Tracy.  She looked GREAT!  No more stinking nose tube.  She had had a great morning responding to the nurses with and us with smiles and short answers.  The best was when one of the nurses asked her name, to which she responded Tracy without any hesitation.  She also sat up in bed on her own and I supported her for probably for a couple of minutes.

Ron decided to stay another night and I was ever so thankful.  He says, "That’s what brothers are for".  His care for our family throughout this journey has been such blessing and a comfort to us.  He says I am sure you would do the same for me, and God willing I will never have to, but I would.

Thursday was also the introduction of Dr. Robert Paretti.  He is Trace's new lead doctor until Tuesday.  I like him, he is a can-do kind of guy, let's try some things, or as he calls it "we are going fishing".

He has re-ordered some tests and tried some different vitamins and steroids too. 

Tracy slept most of the rest of day and had a pretty good night.  Ron got up Thursday morning and left before dawn.  I hated for him to leave, but had Val Sanger and Janice Crago, sorority sisters of Tracy coming later that day.  This would be Val's first visit and Janice's third visit.

They arrived around 5 PM and they looked so thin and beautiful (description provided by them, but true!) I hardly recognized them.  I quickly gave them Tracy's report and headed home to Troy to spend the night with Drew before he went to our church's student winter retreat.  It was great to be home with him and Murphy and sit on our own sofa.  The sleep was not as good.

I got up and did a little work, cleaned, packed my laundry and dropped Murphy off with the Harfield's.  I couldn't go home without stopping by my SoRoSbux, so that was the next stop before heading into the office.  Suffice it to say I finally arrived in Ann Arbor around 1:30 Friday afternoon.  Tracy was having an EEG so I met Janice and Val at Angelo's, my favorite restaurant.  

When I finally got to Tracy's room she seemed somewhat agitated, not real vocal, but alert.  We stayed until around 6:30, when we went to dinner.  

After dinner we returned to Trace's room where I stayed until 11 PM, Val and Janice left around 10 to give Tracy and I some quiet time, as they said.  I was glad I stayed; Tracy had a fever and I also found out they had inadvertently changed her dose of Ativan again.  I forgot to mention that they changed the Ativan from 6 mg to 4 mg on Tuesday evening. They don’t like to decrease a medication by more than 20 percent at a time, which that change did. The nurse was just following orders but contacted the doctor who agreed that it didn't seem right and ordered and extra 0.5mg until the morning when the lead doctor would be in to sort it out.  Before I had left Tracy's fever had subsided almost a full degree and was only slightly elevated.

I returned to the Med Inn met with Janice and Val for a while and then headed to bed with my sleep meds.     

I will close here for now.

God Bless and "Never Give Up... Never Ever Give Up!"

Rob