Since we did not achieve the original goal of getting Lee home for her birthday, we decided to just minimize the focus on tubes, wires, and dressing changes while enjoying the bright spots provided by the colorful cards, encouraging videos and thoughtful gifts several of you sent.  [...]

After our longest time apart since I first moved to Washington over 16 years ago, Lee and I finally got to be in the same space together yesterday!  While the masks, tubes, pumps, and almost constant cycle of staff didn’t necessarily create the best “vibe”, it was a truly precious gift to reunite with my best friend of now over 35 years![...]

I’ve got to be honest and transparent that today’s update is a bit difficult to share.  After apparent stability of her feeding tube for a full week since its placement, the area surrounding Lee’s new J Tube began having leakage late yesterday afternoon.  The nursing staff immediately contacted her surgeon who had them reduce Lee’s tube feeding rate but the leakage did not noticeably change at that time.  Since the surgeon has not actually seen the situation first hand, it’s too early to know what her assessment or response will be when she makes rounds today, but I’m sure you can understand what an emotional hit this was for Lee (and me).  [...]

Tuesday was one of those “two steps forward and one step back” kind of days for Lee.  On the “positive and praises” side, the increased rate of her tube feeding was successful and she’s now up to about half of her pre-surgical rate. There was also progress on Thor’s weight loss plan as two additional medications were transitioned away from IV to either oral or “opposite” (another vague description to avoid ruining breakfast for the squeamish) administration routes.  [...]

Monday brought continued improvements for Lee in her quest to de-tether from Thor and gain her independence.  Two more medication pumps were retired and an additional monitoring probe was removed.  The progressive downsizing coupled with some strategic rearrangement of her room allowed Lee to regain a bit of autonomy so she is able to get up and around again without assistance for every bathroom trip.  She was also excited to rejoin the hall-walker circuit for a few laps with the help of her nurse/Thor caddy.[...]

Lee reached another big milestone yesterday on her journey toward getting to come home.  She had her first successful nutrition through the new feeding tube without any apparent complications.  Her doctor kept the infusion rate very slow for the first trial but plans to incrementally increase the rate and volume over the next day or two until she reaches the normal rate we’ve used in the past.[...]

Hopefully Lee will still feel good about giving me permission to post these photos once she’s on less medication, but I thought they helped provide some context to what has to be accomplished before she gets to come home.[...]

The first half of yesterday was really tough as Lee continued to battle unrelenting nausea and reflexive vomiting.  Thankfully she was blessed with an amazing nurse and some quality time with her surgeon who put their heads together and formulated a plan for some changes to her medication regimen in the hope fo stopping this cycle.  [...]

Good morning all, Steve again.  Yesterday proved to be pretty challenging as Lee had a return of her nausea and vomiting, which is difficult enough without having just had abdominal surgery.  Getting relief and control of this is her top prayer request for today as it makes all the other parts of her recovery much more challenging. Lee says this round of the nausea feels like it could be a reaction between some of the different medications she’s receiving and as you can see from the attached photo there are plenty of things to interact.  [...]

Well, you are stuck with me for at least one more update but I must start by thanking all for stepping up to the request for prayers to get Lee’s pain under control and allow to get some rest last night.  I had not seen or heard her so uncomfortable in over 20 years since right after her first spinal fusion surgery when they had just placed the bolts and screws necessary for securing the cervical halo to her skull.  Thankfully, by this morning she was quick to share that your prayers and her care team had brought her pain down to much more tolerable levels and even allowed her to get some blocks of much needed sleep.  [...]