Hospice

Ash Wednesday is the night Mom went into the hospital and had emergency surgery, a few days ago Good Friday the doctor told us she would not heal. I asked if hospice was appropiate and his answer-- we've crossed the line where we're preventing her death instead of prolonging her life. We consulted Hospice and today Easter Sunday will be her first day under full Hospice Care. Once papers were signed yesterday it took til 8:30 last night to physically get the move done. She is very much at peace with this decision; though it was a difficult one for the family to come together on. I take comfort in knowing her decision is the right decision; though I say it with a heavy heart.

I hope each and everyone of you spend this special day with loved ones.

Comfort Care, Do Not Resuscitate

After my last post, thngs continued downward. Her breathing was labored, shallow, vitals all over the place in both directions high and low. Blood sugars irratic, pain level increasing, flow from the chest tube very minimal to where they decided to remove it. Feeling that it might help her be more comfortable. The decision made that she was very depressed and in lots of pain and the talk of taking back to ICU only highten that depression. So, family discussion and DNR order written. The doctor felt if the tube went in, it would never come out and thats not what anyone wants. Once the decision was made and she was able to discuss her wishes, see family members she became more calm and that seemed to help her breathing. Changes in her meds with the inclusion of a mood elevator also helped; not only her-- but family as she looked better. The tough part is is it an elusion? Her vitals are better, her breathing was better, they took out the G tube also. Her hemaglobin continued to drop farther and got down to 8 again; 2 more units of packed cells were given. This now makes 12 or 14 units of packed cells she's been given; so clearly the bleeding is still an issue. After the cells are given she has a little more color, a little more energy and her level actually got to 12 one day, the next day it dropped to 11.5, wonder what it will be today. If the count levels out or maintains, they may feel the bleeding is coming under control; but we've been many times before. Confusion and pain increase when hemaglobin drops.

Yesterday, they decided to see if she could tolerate any food. This is the 3rd attempt since surgery 7 wks ago. She had small amounts of hot tea at all 3 meals yesterday with some very thin diluted brooth, a little Italian Icy. She didn't throw up, or have more pain as she has in the past; but it's too soon to tell if her stomach is going to process it this time.

Her partially calapsed lung has worsened in the past 2 days, and yesterday 2 Interns/Residents were talking about chest tubes again. I told them she's already had 3, and I didn't think she'd let them put another one in. They wrote orders for an occlusion dressing at the site of the last chest tube to hopefully prevent air from the outside from entering, feeling that might help the situation. They'll do another chest x-ray today. The other possible reason for the calapsed lung would be a hold in the lung; but that isn't showing up on x-ray.

She's so very tired of this all, depressed. I don't think I can count the number tests, tubes, holes etc. her poor body's been through.

Thanks again to all for your continued support both here via comments, emails etc. I truly appreciate each and every hug, good vib, and prayer.

Sunday....I just don't what to think, Day #40

Not much new from Mom's bedside there at the hospital. Hemaglobin still being watched carefully to assertain how much bleeding is going on, and whether or not things are recovering in that area. She was 11 something after the last 2 packed cells given about 5 days ago, she dropped to 10, which while to low seems to be leveling out. She's coughing up less blood. The chest tube drained quite a bit out of her lungs for the first day and has slowed down since then. The color is less bloody, so that would appear to be a good sign.........on the other hand, they say her lungs aren't clear and were hoping to get more fluid out. Respiratory therapy treatments continue around the clock every 4 hours. Her vitals.......well, we wish we knew. One minute they're bad, then they get a little better for a few minutes, then go bad again. Initially yesterday am, she looked very bad and was in lots of pain. Later in the day, her pain level seemed better and she was more responsive and better color.

Each day as we walk down the hall to enter her room, we wonder how that day will go. It's sure been a long hard hospital stay. I've been pretty impressed with the level of caring nurses she's had over this long haul. Some better than others, human nature; but many who truly care and help not only her, but us family members as well.

Continued thanks for your prayers and support.

Today, Day 36! Better or Worse?

The last 4 days have been hectic, emotionally up and down; though mostly down. Mom continued to bleed, continued to throw up blood and became increasingly more uncomfortable. Her breathing became more labored, hemaglobin was up and down though more down than up. She received more packed cells.

Once again the surgeons thought about doing an endoscopy to try and determine the source of the bleeding. Once again they scheduled and cancelled it. This now makes the 4th one scheduled, and 2nd one cancelled. This wasn't communicated very well, and there seemed to be confusion to do it or not.

Enter, Dr. Iscabar!!! A wonderful doctor and communicator. FINALLY! She's a Pulmonary and Intensivist. She explains she's got too much fluid in her lungs to do endoscopy and that would heighten the risk, she ups her Lasix's, ulters the IV's, and indicates she needs closer watching. Transfers her to A step down unit (where she went right after being ICU), a much lower nurse to patient ratio, more equipment etc. Further she indcates the primary difficulty needing immediate attention is her lungs, full of liquid, the need to stop the throwing up, emphysema being a major problem. Cardiologist get involved and the decision is made for added suction to get some of the junk out of her stomach, insert a chest tube (now her 3rd one) to drain off this liquid (which appears to have lots of blood in it) from her lungs. They did all this yesterday. She's in pain, but actually is breathing and resting better. Her hemaglobin is starting to recover.

For the time being, status quo. Everything seems to be monitored more closely and she makes rounds more often and communicates and toes and fingers crossed; we might be seeing some minimal improvement. She's far from out of the woods; but...maybe a light at the tunnel can be observed.

Thanks to all for your continued support and prayer, all is much appreciated. Managed a few updates here on the blog with my charity numbers. My yarn bag stays with me at the hospital. Most recently, I've made 6 pair of booties and 5 infant hats.

I hope to get some pictures proceesed to update the bridge, so please check in later there. Would love you all to pop over to my SIL, Jan's site (some of you have before), to see her really awesome new blog banner. We're both pretty excited about it. Badges for both in the right side bar.

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.