Share. Connect. Love.

Posted 2020-04-23T19:16:18Z

It Is Well

Hi Dear Friends,

I wanted to thank you for your patience as I have let some time pass since our last medical update. We have had a lot going on with appointments, and especially trying to manage those around the COVID19 pandemic. Steve has had an exceptionally high work load as you can probably imagine as he and his team are coordinating best ways to care for our firefighters as well as be accessible to the community members in need of Fire/EMS services. I am Coordinator of the Fire District’s Family Support Program and that has had its own set of challenges. Our last post was to celebrate our 25th Wedding Anniversary and it was super nice to do a post about love, joy, and hope. The paradox is that even a medical update post still has this same love, joy, and hope. These emotions aren’t based on circumstances but rather a deep abiding relationship with God. The difficult road we have been on is certainly trying and can be emotionally overwhelming at times. The comfort comes in knowing that Jesus will not bring more into my life than what he also prepares me with to battle the storm. Our last posts in January were evident of our difficult journey and seeking God’s guidance and comfort as so many things were all happening at once. So ... lets catch up ...[...]

Posted 2020-01-31T03:41:00Z

Still Whispering; Can you hear us?

First, I want to thank so many of you who reached out and heard my “whisper” to pray for Steve and me. Thank you for the messages, cards, meals, and comments here on Post Hope. I wish I could say that my weariness has improved and I am no longer whispering to my God to lift my soul. The past days have been rough. I had a procedure Tuesday to place a feeding tube into my intestines and by-passing my stomach. So many medical supplies, routines, timed feedings - just a little overwhelming right now. I still go to the hospital infusion center twice a week for 7 hours each day to get hydration infusions. My new peripheral line that comes out of my arm is being difficult and it looks like today’s infusion is a bit more complicated and will require extra hours here at the hospital. We hope the new feeding tube routine might reduce that time some as I get nutrition and hydration lower in the GI tract for better absorption. I got into see the cardiologist at the UW Heart Institute. I am currently wearing a 7 day heart monitor to determine if I need a pacemaker implanted. I was cleared to have my thumb reconstructed (too many dislocations) and that will happen on Friday, February 28th.  I continue to be faithful in doing my home PT/OT exercises for my joints. So.... that’s pretty much the new medical facts. Pretty straight forward.[...]

Posted 2020-01-17T03:02:00Z

Whispers

Finally home .... it was a rough hospital stay. I posted last on Day 3 and just now in the last day feeling well enough to share my thoughts. Days 4, 5, & 6 were pretty tough. I developed secondary issues that almost landed me in the ICU. I had trouble maintaining my blood pressure and the docs feared sepsis had settled in. My fever shot to over 103 degrees and I had severe muscle rigors that required IV meds to calm. They started a 4 hour sepsis protocol and by the end of the 4 hours I had come around some and my vital signs were slowly improving. I developed high levels of a protein that measures heart damage. Ran some immediate tests that helped ease our minds of the stability of my aortic aneurysm. I will be following up with my cardiologists at Mayo and at the UW. There were other issues addressed including blood count issues and out of range electrolytes. It is felt that we need to spend some more time addressing my GI issues and see if we can find a plan easier on my system. Currently my gastrostomy tube drains everything leaving me dehydrated and lacking important enzymes and minerals. Right now we stay ahead by having 2 days at week at the Infusion Center at the hospital. I am there over 7 hours each day.  Not the part time job I had planned on. God must not have gotten the daily calendar I sent up that had my plans for myself laid out. Oh, now I remember God’s words to the prophet Isaiah “For as heaven is higher than earth, so my ways are higher than your ways, and my thoughts than your thoughts.” Isaiah 55:9[...]

Posted 2020-01-08T17:30:07Z

Hospital Day 3

I rested fairly well last night. The port surgery site is very painful this morning but pain meds and ice packs are helping. My fever has broken and I continue on IV meds. They put a triple “lumen” (IV ports) in my neck (picture above) so I have good peripheral access for my meds and fluids to run through since the port is gone. The docs haven’t been in yet today so I don’t know how long I’ll be here. Take note of the above picture with Shared Army Man keeping guard over the IV pumps. (If you don’t know the story of Shared Army Man see the earlier journal entry about him! He has been to every hospital stay since 2000 and is shared with my high school volleyball coach and dear friend!) Thank you for your notes of encouragement and continued prayers.[...]

Posted 2019-12-30T17:20:01Z

Surgery Change

Hello! Praying this note finds you having a blessed Merry Christmas and looking forward to the New Year with anticipation of great things to come. Just wanted to drop a short note to let you know that my thumb reconstruction surgery scheduled for tomorrow (the 31st) has been postponed. It was scheduled for the Orthopedic Outpatient Surgery Center. After a review of my surgery history, the team there and the doctor decided we should do the surgery at the actual hospital in case there are complications with anesthesia or other things. I will find out Friday the new surgery date. I’ll post here when I know more details.[...]

Posted 2019-12-10T03:06:51Z

2019 Christmas Letter

Merry Christmas and thank you for coming to our blog site. When I did the first draft of this Christmas letter it printed out to over 20 pages!!! I realized I had summarized all of our blog entries for the 2019 year plus adding in items that weren’t in the blog. Oh my! It occurred to me that if you were interested in the details that you could simply go back and look at the blog entries for yourself. I hope you will take the time to grab a warm cup of cocoa and spend a little while in our story and also see how God has been with us through it all. So then my dilemma became what should be included in this year’s Christmas Letter? I hope you will enjoy a peek into the less well - known. For an update and details on my health battles, I will give you a summary but really hope you will go back and read some of the entries from the last year.[...]

Posted 2019-08-30T01:20:01Z

Gastrostomy Tube and other Updates

Hello to all of our dear friends and family,

Today seemed like a good day to bring you an update. We had a semi-crisis when my gastrostomy tube dislodged and fell out of my stomach during the night. With a direct opening from the skin into the stomach we were concerned about the risk for infection. Additionally, the doctors had said if it came out completely and I couldn’t slide the tube back down the tract, we should go to the ER. The problem is that the tract begins closing internally within hours. So, 4am saw us departing for the hospital. We were quickly triaged and put in a room. The doctor said the procedure was too complicated for the ER and that it needed to be done by the Intervention Radiologist Team. The procedure was scheduled for 11am. Oh my goodness! Because of the “rush” to preserve the tract, it was decided to get immediately underway without the use of sleep or pain meds. In all honesty, it was excruciatingly painful as parts of the tract had already made a soft closure and the doctor had to push through them to open the way. Examination of the old tube showed that the internal balloon that holds the tube in place had burst. Ugh! After 30 minutes of pushing, pulling, sweating, and biting my tongue, we were finally done with the procedure. The doctor at one point when the pain was  so bad suggested we let the current tract close naturally over a few weeks and then re-do the complete new surgery as if it was the first time. He saw the tears well up in my eyes with the thought of starting from scratch again. He said he would try one more time and that now would be a good time to pray. The tube, with a firm push, popped through the closed part of the tract and the x-ray machine showed it was in the proper place. More tears from me - tears of thankfulness. [...]