Six Days Later

Looking back over this blog, I realize this online journal is now mostly about daughter Juliet, not "Arts and Crafts".  And it has been almost a week since it was updated.  (Thank you, Sharon, for your text last evening asking about Julie and prompting me to write an update.)  Here is what has happened since last Tuesday:

Julie was taken by ambulance from Denver on Wednesday, a five hour trek over the Continental Divide, which resulted in more trauma to her pressure wounds.  She was placed back at the manor, sans IV medications, all being replaced by oral meds.  Good news: she was transferred from the hospital back to her "manor home." I returned a few days earlier back to GJ.

Since arriving back in Grand Junction, she has been kept on bed rest and on a special mattress and bed at the manor that shifts her body weight to try to help her heal the back thigh area. We have read half a book aloud since then: Virginia's Diary. And Gene reads his book to her.  We play Word Chums. 

Today she was angry, mad, and frustrated at being kept in bed.  She broke her iPad Saturday (it fell off the bed), so I got it replaced and found some little cord attachers that will keep her phone, her Fire, and her iPad all hooked up and disentangled from one another. Maybe.  And I bought a one year guarantee so that if she breaks it again, the warranty will cover it.  Bad news was that I got a glass cut from the screen; just glad it was not Julie that received the sliver in her hand.

And we have had several talks about hospice being brought in to help her.  These were not easy sessions, but realistic at this time. For now, the APH (atrial pulmonary hypertension) is being managed, but APH is a progressive heart disease under the umbrella of COPD (chronic obstructive pulmonary disease), a diagnosis that results in eventual death.  The good news is that the lasix are keeping fluid from building up around her lungs, and she is breathing easier.  We will not discuss the bad news.

And I finished the Promenade Shawl.  Never will I knit that again as those garter stitches never seemed to end.  But eventually, finished...

Back at the Homestead

On Saturday, it was such a privilege to meet PomPom, whom I have followed on her blog for at least five years.  We have participated in Christmas swaps, and exchanged comments  on our blogs over many past posts.  She is a delightful, warm, sweet, loving person who has prayed me through many a trial (as has Sandra and many another, thank you very much).

Here is a picture of the two of us taken by PomPom on Saturday:

"That is God's call to us--simply to be people who are content to live close to Him and to renew the kind of life in which the closeness is felt and experienced." ~ Thomas Merton ~         (as read on Sandra's blog)

It was so kind of her to give me a fixed hour prayer book, The Paraclete Psalter.  I am reading today Psalm 24.  Thank you again, PomPom...prayers for your husband as he is in Taiwan this week.

Yesterday, I returned back from University Hospital in Aurora, leaving Julie for more medical care.  Over the weekend, she was bombarded with lasix (diuretics) and today is to have a follow-up echo-cardiogram to determine what levels of medications would be in her best interests to hold pulmonary hypertension (PAH) at bay. She might return this afternoon to Grand Junction by ambulance, or she might not.  The roads were to become icy by last evening, and Glenwood Canyon will be closed tomorrow during the daylight hours for repair from a previous rock slide. It is unlikely that Julie will have to be air ambulanced back to Mesa Manor here in Grand Junction.  But she might have to be in hospital until Wednesday when the roads are open and passable.  It appears we are back living in the wild west when wagon trains could not make it over the pass, which is almost the way it is over the Continental Divide in present day.

That reminds me of the book A Lady's Life in the Rocky Mountains, a good read about a single woman in the mid 1800's, Elizabeth Bird.  Amazon says:

"A Lady's Life in the Rocky Mountains" is one of the many accounts of Isabella L. Bird's amazing travels and adventures. At the age of twenty-two in 1854 Isabella left a comfortable life in England for a life of adventurous travel. "A Lady's Life in the Rocky Mountains" is the account of six months of those travels in 1873 through the rugged terrain of the Colorado Rockies. Based upon her letters to her sister this account relates the many hardships of the great western frontier in the pioneer days as well as the awesome beauty of nature she found in the western territories.

But I digress.  Now the day lies ahead.  It is rainy and dark, a good day to finish up that Promenade shawl.  And wait to hear more news from University Hospital on its 254 acre campus, a city within a city.

Pulmonary Hypertension and No Surgery

Julie was flown over to Denver Monday night with a flight nurse, arriving at the Aurora Anschultz Campus, where the University of Colorado Hospital is located, along with Children's Hospital. She flew with Full Armor.  Thank you, friends and family, for holding her up in prayer.

A shunt revision, for Julie, with many complications due to spina bifida, is no longer a viable possibility at her age and stage.  Over the past 48 hours, she has been and is still being evaluated by seven medical specialty teams.  She is on contact precautions this morning, meaning gloves and gowns are required by anyone entering her room, and remains in the ICU.  I will get breakfast in one of the dining areas prior to going into her room.  Then back to gown and gloves and reading to her before leaving her room again for lunch.

But the good news is that her involved problems have led the neurological and cardiac teams to a likely reason for her shunt related pressure problems: atrial pulmonary hypertension.

Mayo Clinic has a video explaining this medical complication, but I cannot seem to find the link on this iPad to make it work on the Blogger platform.  If googled, it is easily found.

Treatment to get this pulmonary hypertension under control will require medications to draw off fluid from around the lungs, decrease of salt intake, weight loss and fluid restrictions, along with a usual cardiac diet.

Julie will remain here at University of Colorado Hospital for a few more days, and more tests.

Word Chum friends, playing words will be one of my activities on schedule today.  It would be for Julie also, but we are having issues with charging her device.  Must charge up her Kindle Fire so she can get back to work with Word Chum power!  In the meantime, we will be reading aloud.

PS:  I drove over Vail Pass yesterday to get here.  The Pass had high winds and blowing snow, and I was driving the seventh car in line behind four snow plows, so I felt led over in a special way on dangerous highways