Saturday, October 15, 2011 – This is a long one and a timeline of how the day has gone.

This morning, according to Mom (who saw a bug crawling up the chair while she was reporting this info), Dr. Sokol was concerned about the functioning of her kidneys and increased a medication to aid the kidneys.  Dr. Ward seemed less concerned about the kidneys.  Both listened to the noises in her stomach and said they are normal.  They took a stool sample (still mostly bloody) and blood sample and are awaiting those results.  

Mom’s white blood cell count was very high today and the percentage of new white blood cells has also gone up again.

Dr. Campbell (covering for Brennan) came in this morning and mentioned that Mom is not looking so good. She spoke with Brennan and said she would be back in a few hours
 
The nurse gave her a spirometer (one of those things to inhale to improve/measure lung functioning).  The nurse said that the reason is in case she has to have surgery, she will need to do this after the surgery.

The infectious disease (ID) doc came in again and after conferring with the other docs, they are thinking that Mom was in fact infected with some strain of e-coli (because of the kidney issue), even though the first test was negative.  They are going to run a different type of test for e-coli, but in the mean time, they are taking her off of the antibiotics since that is not the way to treat e-coli.

He also decided to move Mom to ICU so she could be attended to and monitored more closely.  He did not seem too concerned about her current condition in terms of anything being critical, but he does want her watched more closely.  We all agreed that this would be a good thing.

Dr. Campbell came back in and was surprised to see how well Mom looked just a few hours later.  She was glad to hear Mom was moving to ICU and said no surgery for today.

A kidney doc came at the request of the ID doc.  He was very informative.  Mom’s kidney function had deteriorated the last few days, but appears to be a little better today. He mentioned that with Mom’s dehydration, the contrast used in the CT scan could have been the cause of the kidney issue (which could change the e-coli diagnosis).  He has increased the flow of her IVs to hopefully resolve the dehydration issue.

All the docs continue to say that they expect Mom to recover without surgery, but they are keeping a very close eye on her.

Sunday October 16  - A crazy day in the hospital

The most recent X-ray showed that there were no air pockets in the intestines, which is a good thing.  There was also no blood in a bowel movement today and Mom has not had any morphine since yesterday morning, which is good for her but bad for comic relief.

Part of my post from yesterday must have accidentally been deleted.   The Nephrologist wanted to start an apheresis exchange which is where they insert another port in to Mom, and like when you are donating plasma, this machine takes out some of the plasma with the e-coli toxin and replaces it with “clean” plasma.  The thought is that by removing the toxin, she should get better.  The ID doc had also mentioned yesterday that surgery is not the best course for this type of colitis.

This morning, that had still not been done but it was scheduled to be done soon. Several doctors were in to see her this morning and after reviewing the x-ray, another CT scan was ordered.  The results of that showed that part of her intestines were looking better, but her colon was still very inflamed.  There was also fluid build-up in the lungs and abdomen.  This is where the frustration really started.

After seeing the CT results, the surgeons decided it was time to operate and started the ball rolling for that to happen.  Luckily (I hope), the nephrologist and ID doc must have overruled the surgeons because after about 45 minutes of waiting to go to surgery, Dr. Campbell came back in and told us there would be no surgery, but instead they were moving ahead with the apheresis exchange procedure.

The docs mentioned they believe Mom has hemolytic-uremic syndrome.  You can read about it here http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001539/.  As I had mention a few days ago, this is most often found in children so we have determined that although Mom is 78 on the outside, she is an adolescent on the inside.  That would of course explain her insatiable desire for dessert.

The docs said that if the plasma exchange works, there should be a noticeable change by tomorrow.  If there is no change, then the docs will confer again and determine a course of action.  Should Mom have to have surgery, I won’t send out an email until the operation is underway…

Monday October 17 – Today was a much better day.

Mom’s hemoglobin and platelet count was very low so one of the docs ordered blood. We are waiting for some tests to come back, but she will probably receive some more. Dr. Brannan came in early and he was glad to see things looked better, but commented this is still a "very serious condition."  He gave credit to Martinez for making the diagnosis, though noted that it is a clinical diagnosis, not based on the lab work.  Brennan said no surgery unless they see any perforation of the colon.

Mom’s white blood cell count is at 30 down from 40 yesterday.  Normal is 5-10.  The bands which are premature white blood cells, yesterday were 20, today are 0, which is good.  Normal is 0.
 
She was given a steroid at night because of trouble breathing.  She is also getting a nebulizer treatment every 3-4 hours.  Yesterday was a tough day and Mom did have some morphine at night. She slept very well, a little past 7:00am and looked very good today.
 
Sokol also came in.  Apparently he will continue to follow mom.  He agreed with Brennan & Martinez to continue with plasma apheresis which is the treatment for this condition and seems to have made a big difference.

Mom is pretty swollen from fluid retention so she was given a diuretic which was working great and her urine output increased quite a bit.  Her kidney function had dropped to about 50% of normal but it is looking much better now.

Mom has a nephew in California who is a nephrologist and he spoke with the local nephrologist today.  When I spoke with him, he told me that mom seems to be on the best course of treatment for this condition and stated Mom had some good docs looking over her.  He also mentioned that Mom has a very intriguing case and that “boring” is much better.
 
Mom actually looks better now than at any time since her admission (to the hospital, not to her new liking of morphine) and was joking with the nurse and us.

Tuesday October 18 – A rough day.

Mom is much more swollen today.  Dr. Edgerton (partner of Ward) was here about 6:30am.  Sokol came in around 9 and kind of scared Mom as he is very to the point.  He did say he was cautiously optomistic, but she has a lot going on right now.  Big issue right now is fluid build-up, especially around her lungs. Sokol called the nephrologist to discuss starting short term dialysis to rid the body of the excess fluid. What he said to Mom scared her because he was telling her about what may a long term treatment, and she was thinking that if something didn't get better soon that she would not make it.

I explained to her that was not what he said and kept explaining that he was referring to long term vs. short term dialysis and other treatment.

Dr. George came in a little while later and that made her very happy as she really likes him.  He explained the blood issues again to her and ordered some more blood tests.  Her white blood count was lower, but unfortunately, so was her platelet count.

Dr. Sierra was also in and basically gave her the same info Sokol did but with a smile on his face.  I discussed this with Mom and she calmed down much more understanding that what she was really upset about was Sokol's presentation, not the information.

The nephrologist decided to try and treat the edema without the dialysis for another day.  The diuretic seems to be working and avoiding dialysis would be a good thing.

Mom was very tired today as it is very difficult to sleep in ICU.  It’s like 24 hour daytime with a lot of activity.  Also, Mom can readily see what is going on outside her room, and we all know how much she likes to know what is going on, so any sound wakes her up.

Later in the day Mom had been given a fair amount of morphene as that would help her sleep and she really needs to rest.  We were told that even though she has fluid around her lungs, her breathing is pretty good while she is sleeping.

Wednesday October 19 –  Started off good, but…

This morning, Mom looked better than yesterday but not as good as Monday. Dr. Brennan authorized her to have clear liquids again which was great.  She ate a bite or two of jello and drank a fair amount of water.  Her kidney function was a little worse and her lungs were filling with fluid and inflammatory cells.  The hemolytic-uremic syndrome (HUS) markers had improved some and so did most of her other “numbers”.  All docs agreed that Mom was trending in the right direction.  They are still holding off on the dialysis.

The plasma apheresis was started around 10:00am and completed in a few hours.  Dr. Wong said the numbers are better than a few days ago.  Wong increased the diuretic mildly, to not stress the kidneys.  Mom is now going to receive a constant drip of the diuretic instead of 3x/day.  He also thought her swollen right arm was due to fluid build-up and not a clot as was the concern of Sokol.  The ultrasound should happen this afternoon.
 
He agreed with George about giving mom 2 units of blood, and she started to receive it shortly after the apheresis exchange.

We did have a scary issue for a while that is now stable (relatively).  Her breathing got much worse.  They tried a different breathing tube in her nose that was high flow for a few minutes, but then Dr. Sierra (the ICU doc) came in and said to put her on a mask that pumps oxygen in (like a CPAP for sleep apnea patients).  The numbers were okay, but she did not sound good.  The concern was that although she was getting oxygen (as reflected by the numbers on the computer screen), the red blood cells may not be distributing the oxygen.  He also ordered the blood she was receiving be stopped temporarily b/c it was too much fluid.  The constant diuretic was started.  They did a blood test and said they would be back in 10 minutes.  If not good, they may put a tube in her and put her on a ventilator.  The blood test came back as "okay, not excellent."  Sierra said to continue her on the mask.  Will do another blood test in the morning.  The blood test is from an artery so they had to poke her again, b/c the PICC line goes to a vein.  The blood was restarted, but she is only going to get 1 unit instead of 2.  She has been sleeping all afternoon which is good, but they did give her morphine and ativan earlier which knocked her out.\

Ultrasound came back negative for a clot.  

Mom did not wake up until about 6:30pm, so there may have been too much meds in her. When she woke up she was very startled because the mask had been put on while she was asleep.  The nurse took the mask off so we could explain what was going on.  Mom knew where she was, commented on the color of shirt someone in the hall was wearing, drank some water and went back to sleep.  She kept trying to talk with the mask on but that is a near impossibility.

Sierra reduced Ativan to .5 mg instead of 1mg so she should sleep well again tonight but not be so knocked out.  We’re hoping after a good night’s sleep and some reduction in fluid retention that Mom will look and feel a lot better tomorrow.

Thursday October 20 – A good day

This morning, all of Mom’s numbers looked better including hemoglobin, platelets, LDH, WBC and more.  Her kidney function was about the same as yesterday, but her urine output was very good overnight. The docs added an additional diuretic to help remove some sodium that is building up.

The breathing mask was removed from Mom around 9:00am this morning.  The docs believe that the breathing issues yesterday were in part caused by too much meds, in particular the Adavan and morphine.  It just knocked her out...

Since the mask has been removed, Mom has drank 4 oz of orange juice, a little coffee and ate about an ounce of grits. All numbers look better and so does the most recent x-ray. The edema has diminished quite a bit and she looks good.

Mom did receive the additional unit of blood that was canceled yesterday and she appeared to tolerate the apheresis exchange much better. She ate some pudding at lunch and drank a good amount of iced tea and water throughout the day.  I think other than eating a regular meal, a hot shower is on the top of the list.

Friday October 21 – The Good, The Bad, and the Ugly

The Good is, Mom is really doing much better clinically.  ALL of her numbers are moving in the right direction and her kidney function has improved. She is in fairly good spirits, cognitively alert and is talking well.  She is very thirsty and is drinking a lot of water.  Although she is on a liquid diet, she ate a few spoonfuls of oatmeal this morning and some orange juice but not much else.

The bad is, and it’s not so bad, is that another ultrasound late yesterday did reveal that she has a clot in her right arm which is why it is so swollen.  She also has some pain in her right leg, so another ultrasound was done but there was no clot (so this part really belongs in the good section). She was put on an anticoagulant and will remain on that until the PICC line is removed.

The ugly is the hospital food, or at least Mom’s taste buds and how they react to the hospital food.  She really has very little appetite and says everything tastes bad.  We are going to bring in some oatmeal and real maple syrup tomorrow to see if she’ll eat that.  She is also concerned about eating too much sugar and real food and getting fat… go figure.  That’s probably a good sign that she’s getting better.

Anyway, she is definitely improving and the docs are very positive.  The colitis seems to be much better as her WBC was only in the low 20s today.  I’m hoping that she will agree to some visitors soon as I think a few short visits would do her some good.  If she says yes, I’ll let everyone know.

Stay tuned for more tomorrow.

Saturday October 22 – Short is better

Mom has definitely turned the corner now.  Her WBC was down to around 14,000 (down from about 40K at the peak) and all other numbers continue to improve.  The anti-coagulant seems to be doing its thing as her right arm was much less swollen today.  The docs are putting her on a soft food diet which means now instead of not eating the liquid diet, she still won’t eat this new diet either.

We brought her some oatmeal with real maple syrup for breakfast and she ate a few bites of that. She also had some apple sauce and this afternoon I brought her a pancake of which she ate about half.  Her left arm, although shaky, is regaining some strength and she is able to hold some small items, but more importantly, she can scratch her nose by herself now.

Mom had a bit of a headache today, probably from the removal of fluids from her body. She took some Tylenol (a think it was two pills so probably about $100 worth) and it knocked her out for several hours.  She seems pretty alert, is talking much better and actually getting bored now.  I’ll be pushing for visitors tomorrow.  I read all of the emails from those of you who respond and she really likes hearing them.

Monday October 24 – Not much change today.  The good news is Mom’s WBC is now within the normal range and her platelets, hemoglobin and just about everything else is pretty normal.  Kidneys are still a little behind the times, but they’re improving too.

She sat in a chair for lunch and dinner which of course she did not eat and her appetite remains the big issue right now.  The ICU doc prescribed an anti-nausea/appetite stimulant but so far it does not seem to have had any effect.

When I left the hospital this evening, the plan was to move Mom out of ICU and in to a regular room.  I suspect that will happen sometime tonight or early tomorrow morning, so we’re open for visits.  If you do come, please plan on spending no more than 15 minutes or so as conversation still really wipes her out.  Also, please still no phone calls to the room.  Thanks and we hope to see some of you tomorrow.

Tuesday October 25 - Well, Mom is not happy not being in ICU anymore.  These nurses don't do as much for her.  When I came in this morning, she was complaining about they don't respond fast enough, her head hurts, etc. I told her to stop complaining and start working so she could go home and not have to deal with these nurses.  The PCT today is Sam(antha) and she is as mean as I am.

Mom ate several bites of French Toast today for breakfast and had about a half a cup of coffee.  I had to leave about 8:30am and when I got back at 10:30, the physical therapist was just finishing up.  Mom took a few steps and did some other exercises and then was pretty wiped out.  She took a little nap and then lunch came.  She had a about a half a sandwich worth of chicken salad dipped in some applesauce and also had a few bites of some fruit cocktail.  Still not enough to live on, but a little more than yesterday.

Early this morning a pharmacist came in and we discussed cutting back on the PCT starting today.  Some docs were in in the morning, but there is really nothing going on.  Her hemoglobin is a little low and her kidneys are a little better so there's no real change in her clinically.  I discussed doing the apheresis exchange as an outpatient with the hospitalist.  He was hoping she would only need a few more sessions and then hopefully be going home.  But…

The blood doc ordered two units of blood as Mom’s hemoglobin is low and she is very sleepy.  She slept most of the afternoon.  Lori and I decided that we would leave before dinner tonight to see if the staff would have any better luck getting her to eat.  Merriam brought some grapes for Mom and she ate one (whooo hooo). I’ll be in early tomorrow to shove some breakfast down her.  I’m going to try some roasted garlic with onions and peppers to get her motivated, followed by a large dose of Maalox.

We’re still open for short visits as Mom really lights up when someone comes in to the room.

Wednesday October 26 – An alleged turning point.

This morning, Mom ate only about 4 bites of scramble eggs for breakfast and didn’t want anything else.  After a little while of letting her rest, I started going through other items of food that she might like.  I asked her if she was in NY City and had a world of food at her finger tips, what would her choice be.  After wavering between bland spaghetti and lasagna, she perked up and said “peanut butter”.

Fortunately, Miriam had brought some organic peanut butter.  It is very oily and gooey, but really very tasty.  Mom ate about 1 and a half teaspoons and was full, but committed to eating some every 30 minutes or so.  Shortly after physical therapy (she took a few steps and sat in a chair for a good while), she was worn out and I offered some more peanut butter, but she said she was full and would eat better when she got home.  I told her if she didn’t eat pretty soon, she would go home, but it would be with a feeding tube.  That and a few other things I said to her seemed to have put a little more motivation in her.  She did eat some more PB later, had some chicken salad that Lori made and requested a few more items.

Thursday October 27 – Ahh, the things we learn hanging around a hospital.

This morning, Mom only ate two bites of a bagel for breakfast and a very small amount of applesauce.  Alice brought in some fresh rice pudding from a local restaurant and Mom also had a few bites of that (and it was really good).  Generally speaking, the food intake today was not so good.  The physical therapist did have Mom walk all the way out to the hall and back again, which of course completely wiped her out.

We learned earlier today that tomorrow should be her last treatment of the apheresis exchange.  We also learned that the TPN (IV nutrition) was going to be stopped tonight.  Larry was with Mom when that happened and they celebrated with some vanilla ice cream and peach cobbler.  We’re all hoping now that Mom is no longer receiving nutrition through an IV (that is not the number 4 for you non-medical types) that her appetite will improve dramatically.

As the suggestions about how to get Mom to eat continued to come in, at least two graduates of the University of Florida (I won’t say what year but the seventies were very influential in their lives) suggested that Mom imbibe in some medical marijuana.  Since I spend a good part of my day in the ‘hood, obtaining this “organic” medicine would not be a problem.  The delivery system however stumped us.  Brownies were too risky as Mom might not eat them, and substituting the “medicine” for oregano in soup might have been met with the same result.  We also noticed multiple smoke alarms in the hospital so the traditional method of self medication was out of the question.

So now, everyone sit back, relax, and try to imagine what Mom would be like stoned, and with the munchies!  A very scary picture.  And this is where the education part of the email comes in.  Larry sent me this link to a description of the anti-nausea / appetite stimulant called Marinol that Mom is taking http://www.justice.gov/dea/ongoing/marinol.html.

Anyway, we’re expecting a big change in her appetite tomorrow since the TPN has been discontinued and she is getting more exercise now.  And if I need bail money, I hope I can count on you all.

Friday October 28 – Those darn smoke alarms…

Not really.  Once again Mom did not eat very much today but there was a lot of other progress.  There was no PT today, but Mom did walk to the hallway three times with just holding on to someone.  But the big news is the PICC line has been removed, the catheter has been removed and as long as she does not need another apheresis treatment, that line will be removed tomorrow also.

But the bigger news is Mom will probably be discharged in the next 2 or 3 days.  She has the option of going home with full time care or going to a rehab center for a short while.  She has pretty much decided  that she would rather go to a rehab center as she believes the therapy will be more intense and she will get better sooner, and we’re all for that.

Lori and Suzanne are going to go rehab center shopping tomorrow so I let everyone know what the plan is as soon as we find out.

Saturday October 29 – Urrrrgggghhhhhh

Mom has been disconnected from just about everything now which allows her to move about quite a bit easier.  She actually has enough strength to sit up in bed by herself, which is something she could not do for the past two weeks.  And it is quite remarkable that she has the strength to do that since she is still eating virtually nothing and no longer on the PTN, unless of course she is sneaking out in the middle of the night for some ice cream.

We also found out that Mom still does have a clot in her arm and another one in her neck where the port is, but none of the physicians seemed terribly concerned about them.  They did call in a vascular surgeon, but he had not shown up by the time we left tonight.

She is also going to have one more apheresis treatment and then that port will be removed also.  The rehab center shopping went well and we will be applying to a new facility in North Tampa.  Not much else to report since there is not a lot of medical change and she is still not eating.  I’ll be bringing in more French Toast casserole tomorrow as she did eat a few bites of that today. Stay tuned in for another report tomorrow about the hospital patient with the most unopened food on a window sill.

Sunday October 30 – OMG!

This morning I arrived at the hospital about 8:00am and what should I see when I came around the corner?  Larry and Mom walking down the hallway towards me.  Mom woke up at about midnight last night and for some reason felt as though she had to walk, so she did.  One of the night nurses walked with her and then got her back in bed.  Larry got her out of bed early and walked with her again and Mom did not get back in to bed until almost noon.  What a difference a day makes!

Mom is still somewhat nauseous today so the hospitalist changed took her off of the synthetic marijuana (since it is a narcotic, it can make some people nauseous) and put her on a different appetite stimulant called Megace, which is what Mom’s nephew Stephen also suggested.  The doc said it may take a while to really kick in, but later in the day Mom ate some cottage cheese and peaches.  She also for the first time in about two weeks actually uttered the words “I’m hungry”.

When the doc asked Mom what she had for breakfast, her answer was prunes, which was true, and there was quite a grin on his face.  I can only imagine his thought of a patient with bowel issues choosing to eat prunes.  Oh well, something is better than nothing.

Dr. Ward also came in today and  said a sure sign that a patient is getting better is that they start pacing the halls.

The vascular surgeon came in today and said after the apheresis treatment that the port will need to come out, and so it did.  Mom now only has a Heparin lock in and nothing else is permanently attached to her.  She looks great, is walking, eating somewhat and looking forward to leaving the hospital and going in to more intense rehab.

I’ll be bringing more prunes (I know, but if that’s what she wants to eat, then so be it) for breakfast and hopefully she’ll attack the French Toast that has been ordered for her.  

Monday October 31

The big news of the day is that the hospital and physician bureaucracy finally caught up to us.  There was “poor” communication between some docs and the hospital and Mom was almost discharged prematurely, but Lori got it all taken care of.

The regular news is that Mom continues to improve each day as she is walking further, generally has more strength and ate a little more today than yesterday.  Pending the results of her blood work tomorrow, she may or may not need another apheresis treatment, and if she doesn’t, I suspect she will be discharged late in the day or on Wednesday.  If she does need another treatment, she will have to have another port placed in the left side of her neck and then we will have to wait two more days for blood work results to determine the next course of action.  Dr. George is watching her blood very closely and he is the one delaying the discharge, which may be a good thing but hopefully just over cautious.

Not much else to report, which is good.  We just need to keep working on the food intake and exercise.

Tuesday November 1 – The best day yet.

Dr. George came in this morning and said everything looks good and it’s time to leave.  The smile on Mom’s face was priceless.  We’re moving Mom to Menorah Manor some time on Wednesday for some rehab which will be primarily building endurance and strength.

This will probably be the last daily post, but I’ll give updates every few days going forward.  Thank you all for caring so much about our Mom and she is really looking forward to seeing you all again soon, hopefully not in a hospital (unless you work or volunteer at one).

Friday November 3 – The move

Nothing new other than Mom has requested no visitors until this weekend. Once we learn her therapy schedule, we will let everyone know what good times to visit will be.