Nothing much new to report today, except that Daddy did get to spend some time sitting up in the chair. I know he was glad to get out of bed! Sheila took Mama home for awhile, but they are on the way back to the hospital now as Mama wants to be there overnight. Ken and Keith have been with Daddy today. [...]
Jesse - Journal
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I had an opportunity to speak with the GI tonight, and it was pretty much a confirmation of the options presented today. He seemed to feel that Daddy has a good chance of being able to swallow without aspirating again with the stimulation therapy and would like to give that some time. We'll take it day by day and if a surgically implanted feeding tube becomes necessary we'll cross that bridge when we come to it. Even if it does come to that, a surgically implanted feeding tube is not forever - it would, however, allow some oral medications to be used through the tube instead of everything going through the IV. [...]
If there are any healthcare professionals following this site, please chime in if I am incorrect on something.
The Charge Nurse returned my call with some of the information I requested. Apparently, it is not unusual for a patient to go several days without nutrition (including water) by mouth or by IV - she stated that some patients go four to five days. As a 'lay-person' this seems unnecessary to me, particularly when the person is clearly uncomfortable and has been asking for water for days. It's apparently also usual for there to be a long period of time from a test being ordered to actually being completed; for example, the swallow test was ordered on Sunday afternoon for Monday. Someone appeared mid-afternoon on Monday and decided it needed to be a different test which was then ordered for Tuesday. Now that Daddy is back on the bi-pap it has been delayed once again, and will now likely be tomorrow. So, he has been thirsty and without water since Sunday with, in his mind (and in mine, too), no real end in sight. It's extremely discouraging for him and difficult for us as the family to hear him ask for something as simple as a drink of water and not be able to receive it![...]
I contacted Vidant and asked for the Administrator - I was transferred to Administration and advised to first express my concerns to the Charge Nurse on duty. As I am also in management (specifically a Customer Service Manager) and do have respect for the chain of command and process for filing a complaint I agreed to do so. I expect to hear back from her this afternoon after she has had an opportunity to research my concerns. I also expect reasonable answers and improvement in the level of care. If I do not receive both I will continue to move up the chain of command within Vidant, and if necessary take my concerns outside of the organization. [...]
Just spoke to Mama and Daddy rested peacefully last night. She was also able to rest more than usual, probably b/c she is so tired. After all, there's really no comfortable way to sleep in a hospital, even for the patients! [...]
Daddy came off the bi-pap around 8 a.m. this morning; the levels are stabilized for now.
We had a family meeting this morning with Daddy and the doctor. We were basically presented with three options if/when the levels rise again:[...]
Jesse slept a lot after breakfast, and had real food for lunch for the first time in a week. He sat on the side of the bed and ate some baked chicken' mashed potatoes, and green beans - just a little, but at least it was not broth![...]
Daddy rested better last night - less interruptions. He was alert and talkative with the nurses when awake - voice is slowly getting stronger. Doctor was in earlier this morning and mostly discussed blood thinners. They currently have him on Heparin to prevent clots but may change to a new drug after speaking with the cardiologist tomorrow. Daddy ate some breakfast (same liquid diet) but can look forward to a slightly better lunch as he progresses to soft foods. He does NOT like broth - too salty! He wanted to shave this morning but can`t use a razor while on Heparin drip. He is sleeping again now. [...]
Jesse seems to be resting peacefully. He's having a bit of trouble waking enough to take meds - probably exhausted. He has been sleeping or dozing most of the evening. He ate some dinner and worked on a crossword puzzle for awhile. When he is awake he is very lucid. His blood sugar was high due to steroids and he was given an insulin shot. Chest is still congested but they are treating this as aggressively as possible.[...]