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.

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.

Day 17 in ICU begins

Mom is still in ICU. She is doing better. Vitals are better, they've reduced her Oxygen level as she's able to do better now on her own. They removed the respirator and she's doing well with that. She still can't talk beyond a whisper. I don't know how long it will take to get her voice back since the respirator was in that length of time. But...the exciting thing is, she's doing far better than she was when they removed it the first time and had to put it back in.

She still has 2 chest tubes, but they are now draining on their own via gravity rather than being hooked up to suction which is another mini step forward.

She's still being fed by way of a feeding tube, though she has been allowed a few ice chips and a pop sicle or two which has been a real treat for her. She's more alert and though still in need of pain meds, it seems she needs them a little less.

We're very grateful to have her still with us and for all the wonderful support and prayers you've all offered.

She might....still a little iffy get moved from ICU today to what they call a step down unit. She still has much ahead of her and will still need lots of support and prayers in the days and months ahead; but for the first time I feel like she's truly turned the corner and is out of the woods.

HUGS and blessings to you all

2 Chest Tubes, ICU...Day 15

We got another surprise yesterday in ICU. Got there wanting a report on the callopsed lung and expected to hear update regarded the possible removal of the respirator. Instead we got news they wanted to insert a second chest tube for the other side of the lung. Apparently, even though puncturing her lung was a mistake and not what anyone wants the upside is that things were draining well. They felt draining the other side with chest tube rather than another needle extraction was needed to remove as much fluid as possible to increase her ability to breath when respirator was removed and to improve her vitals. So, another painful day for Mom. They pulled off quite a bit of fluid during the procedure and even more after by way of the tube. The got her situated, medicated again after the procedure and I think thats the most restfull I've seen her in this long 2 weeks. We all left, as visiting hours were over. Hubby and I headed back when visiting began again at 9 pm to tuck her in. I like to stay until I know she's sleeping and as comfortable as possible. Last night is the first time she was asleep when we got there and remained so. We checked on her 3 times before heading back home.

With any luck at all the next post will be that she's improving, and things are looking up. I thank you again for your support and prayers.

Knitted 2 pair of booties yesterday during our waiting time. Will toss some more yarn in my bag today as I prepare to head back to the hospital.

**Favor to ask
I posted a mini new post on my travel blog (it's nice to post something unrelated to the hospital, something I already have pictures edited for etc.), please stop in look around, post a comment or two. I'd really like to improve traffic on that page. Thanks!