HOME SWEET HOME

Hi faithful friends and family,

 

Last Saturday (4/21) I was discharged from Johns Hopkins (after a 13 day stay).  As Jack wheeled me out of my hospital room and towards the car he asked me, "Don't you feel like the hall should be lined with patients and nurses cheering and applauding?"  I think we have been watching too many movies :0)  However, in my mind leaving the hospital was just as exciting as if there had been a pep ralley.

 

I was so excited to leave Hopkins that I fell asleep during the ride home.  We had a nurse come to the house Saturday evening to show Jack and I how to use my PICC line to get nutrition in me.  Jack was amazing and is taking care of hooking me up every evening and disconecting me every morning.  It is painless, just tastes bad.  The benefit of this process is it will help me gain weight and strength while allowing my GI track to rest.  Of course, I'd rather put on weight by eating cheeseburgers and milkshakes :0)

 

I slept most of the weekend and Monday.  My highlights were taking a bath at my parents with the help of my mom and sister.  I cannot get my right arm wet because of the PICC line.  My mom and sister also washed my hair.  Wow, did that feel great!

 

Tuesday through Thursday I rested at my parents home.  If I get up too quickly, I get lightheaded and everything goes black.  Thus, I mainly stay in the recliner.  My goal for right now is to listen to the Bible on my ipod from Genesis to Revelation.  My mom and I are listening together and writing down verses that speak to us in some new way.

 

Some praises: being home, kind nurses that come to our home, my blood work (taken twice this week) has been great, my bladder has been strong with getting lots of fluids at night, being able to sleep, watching a nine-month old giggle and army crawl on the floor, cards and emails of encouragement, amazing caretakers (primarily Jack and my mom), receiving a prayer shawl, and being blanketed in prayers.

 

I return to Hopkins this coming Tuesday (May 1) for a follow up and to find out the next step.  I am the weakest I have ever been which has been very challenging.  I am learning to rest often.  The phrase I am currently holding onto is "God's strength can be seen clearer in our weakness."  Thank you for your continued prayers!  My specific requests are for continued healing, wisdom for my family and the doctors, and blessings for my caretakers.

 

As always, I am delighted to hold up your prayer requests and/or praises in my daily chats with God.

 

Blessings and deep gratitude,

Becky

UPDATES FROM HOPKINS

Hello faithful friends and family,

I just reread Jack’s update from last Friday (4/13/12) and was blown away by his ability to capture the sequence of events.  I will do my best to provide a chronological account for the past week.

First, a huge thank you for prayers and love.  We needed prayers 24/7 literally because I had attacks of pain and anxiety at all hours.  I had wonderful caretakers.  Of course my parents and Jack have been and continue to be wonderful advocates and stay by my side.  The unexpected prayers that blew our socks off were the nurses on my floor (this was Osler floor).  They had compassion gushing out of their pores and bright, calming smiles.  Another answer to prayer was feeling wrapped in God’s family – 2 different friends from our church in Lancaster, PA had family in Baltimore, MD who came to our room.  These three beautiful ladies brought sunshine and warmth to an exhausted and squashed family.

Probably my biggest celebration came Tuesday when the tubes were removed from my nose.  After two full days of having tubes that went from my nose down my throat and into my stomach – it felt like heaven to swallow without plastic in the back of my throat!

Thursday, was another day of good cheer!  I went from a shared hospital room to my own spacious single.  Once I had a single, Jack could spend the night with me :0)  Thank you, Jesus!

Sunday, my spirits plummeted.  I was ready to be discharged and the doctors were talking about another WEEK in the hospital.  I had two IVs (one in each arm), my blood sugar checked every 4 hours, blood work daily in any spare area on my hand or arm, and 2 shots daily in my thighs to prevent blood clots.  I had literally felt like a pin cushion with welts all over.  In my opinion, a healthy person would be in pain with this kind of treatment.  Not to mention my pancreas was expelling attack after attack of pain.  I should also mention this entire time, I am only allowed a liquid diet, so I am hungry!  On Sunday, I got some new medicine that caused me to vomit.  This was the last straw.

I was transferred to a new private room where I could be more closely monitored and receive stronger medicine.  Now heart monitors were on me 24/7.  Thankfully, I was only in this room for one day and I slept Monday away and was transferred once again.

Monday evening I was transferred to Nelson.  This hall is for more independent patients.  I miss my Osler nurses, but am getting stronger and healthier every day.  On Wednesday, I  got a PICC line put in.  Guess what that means?  No more pricking!  No more IVs!  No more needles for blood work!   I am also walking, so no more jabs to my thighs.

I am on “moo milk” as my mom calls it.  It is a white liquid that contains my daily fluids, protein, nutrition, etc.  Thus, I am not eating or drinking with the exception of a sip of juice here and there.  This is hard, but the good news is ….drum roll… assuming all goes as planned…this Saturday, 4/21/12 I will be discharged.  I cannot wait to be launched!

Once I arrive home, I will continue on my “moo milk” for 12 hours every night through my PICC line.

As far as “next steps”, I will be meeting with Dr. Singh on Tuesday, May 1^st along with a team of other doctors and surgeons to talk about removing my pancreas.

My main prayer request is that I would embrace each day rather that wish it away.

Below is a prayer I wrote and ask if you are comfortable to pray this for Jack and me –

Precious and merciful Savior, we praise you for your provision of outstanding nurses, friends to love on Becky and Jack from across the room and across the phone, competent doctors, and amazing technology.  Lord, we praise you for the healing that has occurred and pray for continued healing in Becky’s body.  Please surround Becky with grace as she learns to embrace each day without eating and may it help remind her and others of the manna you provided in the wilderness and how you, Lord, sustain us with sources uncommon to our society.  Help Becky and Jack to abound with trust, gratitude, and joy.   In Jesus’ Name. Amen.

I trust this pain has a reason.  I know I want to use my experience with horrific pain to help/comfort others in pain.  I am not sure how, but for now I want to pray for those hurting in some form.  If I can pray for you or a loved one, please know I am truly always delighted and promise to keep it confidential.  Blessings and deep, deep gratitude.

Loads and buckets of love,

Becky

Post ERCP Update

Dearest Friends,

I write to you from the bedside of one of the bravest people I know. My dear wife, Becky, and I traveled to Johns Hopkins Medical Center on Monday, April 9th, to undergo the long anticipated ERCP. Since first being told to pursue this test in October 2011, we have been on a long journey of testing during which time Becky has courageously endured extreme and near constant pain. Needless to say, we were excited and hopeful for Monday's procedure - even while being nervous about the potential for another flare of pancreatitis as a result of the ERCP.

Becky has been a real trooper though this entire ordeal and the promise of a successful and timely end to this pain has kept her going these long months. Becky's doctor told us that if Becky woke up from the procedure pain-free then we would know the ERCP was a success and our journey would be near its end. However, none of us was prepared for the amount of pain she experienced as she woke up after the procedure. When they allowed me to go back to see her at 5:45pm she was in excruciating pain, and nothing seemed to be able to alleviate it.

I asked her nurse in the endoscopy suite if we could get Becky on a morphine pump; we've had success getting Becky comfortable with the patient-controlled pain medication option, and since she was so behind in her pain medication, we knew that this would be far easier than having to request pain medication from the nurses each time Becky had another bout of pain. However, they did not get Becky's pain medication ordered and hooked up until 8:45pm. For three hours, she writhed in the most severe pain she said she had ever had. They performed a CT scan later that night and discovered that her small intestine had been perforated during the procedure, and that the air that they had pumped into her stomach for the procedure had leaked into her abdomen. There was a possibility that they would have to operate to fix the hole in the intestine.

During this entire episode, Becky handled herself with such grace and courage - certainly more than I did. Watching her in so much pain drove me to the brink, but Becky remained gracious and loving, and I admire and love her for it.

Becky continues to remain in pain and is uncomfortable to say the least. They needed to insert a "nasal-gastric tube" through her nose and into her stomach to suction out the bile and acid there, giving the intestine a better chance to heal on its own. And we are thankful and praise God that as a result it does not seem to be getting worse, and Becky probably does not have to have additional surgery to fix the intestine. We are also praising God for the wonderful care she is receiving here from various nurses and doctors. We have been so thankful for the prayers, messages, and visitors - all of which are carrying us through this time and helping us to feel God's presence even in the midst of the pain. We pray that the pain would subside, that she is able to get the tube out of her nose (this is a constant source of irritation for Becky), and that she will be released soon (at this point it looks like she'll be in Hopkins through the weekend).

In terms of the "what's next" question, the ERCP revealed significant shortening of the pancreatic duct; in fact, it was too short for Dr. Singh to insert a stent to keep the duct open and unobstructed. At this point, Dr. Singh believes we need to begin thinking and talking about a total pancreatectomy - removing the pancreas - and "autoislet transplantation". During this procedure, they will isolate the insulin-producing cells in the pancreas and transplant them into Becky's liver. The liver will then take on the function of producing insulin for Becky.

This is not the only "transplant" I am praying about. I also pray that Becky's indelible grace and courage would be transplanted within me, her other caregivers, and in you, the community that continues to surround us in prayer and support. Thank you for remaining by our side.

Blessings and peace to you from Baltimore,

Jack Miller