And on and on it goes! Mom 32 Days.

Well...as the saga continues, they did not do the 3rd endoscopy. She was prepped, we were told it would be early am so naturally we all planned to be there. Late Tuesday evening the surgeon came in and verbally said no, they weren't going to do the procedure. However, thats apparently all he did. Her tube feeding was stopped at 12 mn which was part of the procedural prep, and in the am, the docs in endoscopy called the unit to say they were ready for her. One of the nurses started to do the last part of the prep, when my younger brother who'd gotten there early said not to, as he had been there when the surgeon said they weren't going to do it. So....back and forth. Communication has not been good. Finally, everyone realized they weren't going to and started her tube feed again etc. Surgeon still thought it was the ulcers. They continued to check her blood, and as it went up and down they would give her more blood. She continued to bleed, though for a day or so it looked like less; then she had 4 bouts of throwing up the bloody drainage junk, count went down etc. The whole week has been this way. They've continued to give her heparin for blood clots since she's not active, insulin due to the tube feed, IV's, meds for the ulcers, meds for nausea, chest x-rays done daily to check on lungs (trying to hold of pneumonia).

We still just don't know how things are going. One day or even part of the day things seem better then she goes back severall more steps. Her frustration and depression are apparent. Today, they got her a special bed. The hospital rented this high tech special bed to try and help her with the back pain she suffers. Fingers crossed that helps her tonight get a decent nights sleep. She's managed to be up in a chair about an hour the last 2 days but is in pain when she does so; and then is totally wiped out afterwards.

Thanks to all for keeping us in your thoughts and prayers. I've continued to knit like a mad woman spending all that time at the hospital.

Bleeding among other things.

Good grief, things just keep happening; and not good things folks. She's had maybe one good day after chest tubes were removed and things started going downhill again. Instead of being able to feel better or do more, much the opposite has taken place. They tried again to introduce food and she's been unable to tolerate it; brings it back up. Each day she has more pain; not less and got weaker not stronger. She was very pale and blood work showed her hemaglobin quite low, only 7.9. 12 is normal. They gave her 2 units of whole blood last Friday to bring up her level and thought it would give her an energy boast. We all thought her discharge in several of her tubes had changed color and looked like blood, but when we questioned it we were told no ...docs don't think there's a problem. The following day her hemaglobin had dropped yet further to 7.3...a whole point lower after getting 2 full units of blood. They continued to monitor her blood counts over the wkend and it dropped a little bit more; but not drastically so. Sunday they decided yes, she was bleeding and they needed to schedule an endoscopy to determine the source of the bleeding. This is a risky procedure for someone who's had stomach surgery; though they said they would be very careful. The concern is pumping air in there to see, and rupturing the stomach due to the stitches etc.

Monday they did the endoscopy but told us they still didn't know the source of the blood. Yes she had blood in her stomach, but there was too much for them to see to know what was causing it, so they wanted to do it again the following day. Today that is, Tuesday. Today, we were told the same thing; it was too bloody to know the source of the blood. They think the source is ulcers, lots of ulcers that they saw on day one of the procedure and again today. Though in both cases they say they are not bleeding ulcers, but they think they might be seeping, oozing. They want to do yet another one tomorrow. Get this! The main reason they want to do another one tomorrow is someone was suppose to prep her for todays test and didn't and thats why they couldn't see!!!!!!!!! This woman hasn't been through enough; now because of yet another medical persons fault she has to endure more?

She was out of it most of the day today, she's still bleeding, she's getting the prep and they will consult ....the surgeons and the GI guys to determine whether or not to do this again tomorrow. They're typing and crossing her again for more blood and checking her hemaglobin again.
***forgot to mention she got 2 more units of blood yesterday.

Tired, frustrated, worred and now we're approaching the 5th day since we first wondered if she was bleeding.

Spent all day at the hospital, came home for a break and will return again a little later this evening.

Good bye ICU, better??

Been a few days since I posted an update. I have mixed and confused feelings about whether or not Mom is doing better. She's left ICU, which means they think she's doing better; but we're up and down with that feeling. She's miserable, she's in pain, they've continued to do lots of test and she is well beyond discouraged. Monday late in the day (dinner time) they moved her from ICU to step down. The move alone caused her both emotional and physicial difficulties. Tubes get jostled during the rolling around process which causes discomfort. They began giving her food, but she didn't tolerate it well. She felt nauseated, full and nothing tasted good. She's not yet gotten her voice back since the respirator was removed. Getting help takes longer, larger unit, more patients per each nurse etc. Plus when they answer her call light over the intercalm she's not able to speak up enough to let them know what her needs are. Occupational and Physical Therapy came in and did a wee bit with her which cause her heart rate to get real high, her oxygen level to drop (thus oxygen put back on), and caused her more pain and tired her out. Medicated and a nap were in order. No sooner did she fall asleep til they came in and removed both chest tubes..............she said the pain was excruciating. She looked very bad after that and had a tough night, followed by a tough day of more nausea, vomitting, x-rays etc.

Obstruction? They're wondering, as she's full even when they aren't feeding her. After another round of x-rays (too many to count at this point), they moved her yet again to another floor. They discussed putting other tubes in last night and she was most upset about that. However, when I left around 10 last night I was told no tubes, and they were through poking and prodding...or at least for the night.

I don't know what to expect for today.

I've spent 3 days making phone calls and visiting rehab centers in and around my work schedule; trying to prepare for when she'll be released (as I think they do things too hurried and beds in good rehab centers aren't that easy to come by. I've toured 4 and talked to about 8, and have her on a list for 2.

I'm very wordy this am, sorry sometimes it's good --sorta of release for me to type about it.

HUGS to one and all for the prayers, please keep'em coming.

Today day 18, in ICU

Well by the title you can tell Mom didn't get moved out of ICU yesterday. It was another tough day with another feeling of going backward. Such a let down after you think it's finally going the direction it needs to. She was pretty uncomfortable yesterday with having several x-rays, a new central line being put in (arterial line); and an old one removed. Problem is Mom is a very very hard person to stick, draw blood, start IV etc. They have to really work, often get multiple people, and she ends up bruised head to toe. This is frustrating to her, painful and makes her anxious which makes her vitals jump and be less stable than they should.

The person who removed the central line didn't come prepared with what she needed to complete the job and left the room part way through to obtain supplies, somehow doing that the water used in conjunction with oxygen started pouring in through the nasal cannula. She thought she was drowning, as did my Dad who ran for help. That incident made both of their blood pressures sky rocket. Emotionally she was on edge all day, as was he. Her bed was soaked, she had to moved alot to get everything cleaned up which caused her to be in more pain and wore her out.

On the positive side, she had several bites of soup, juice, and jello yesterday. Her nutrition is still really coming from the tube feeding; but....they're introducting clear liquids for the first time. I think thats pretty exciting.

It sounds like if they need her bed in ICU today, she may be moved out; as they consider her stable. Being stable is obvioiusly a good thing; though she's apprehensive about going to a different part of the hospital. In step down areas and regular areas of the hospital you obviously have less nurses taking care of patients and thats a bit scarey.

Hoping today is a better day. I'm going to the hospital before heading to work. I do feel I need to try and get back to work again.

Again many thanks to all for the prayers, and well wishes.