ICU update, Weds 2pm

Hi friends,

Anne survived the surgery last evening that would remove her medi-port.  They took her in at about 7pm for that, and I figured it was a good time to go since she'd be groggy following the procedure.  Dr. MacGillivary called me after he finished and said it went well, and that he removed the fluid from her abdomen.  He said they will certainly test the fluid, but that it appeared perfectly normal to his naked eye.  Nothing concerning about it.

Today she was sitting up when I got here, and it was a sight for sore eyes.  My Dana came in with me today, she called and said "I'm going in", and she'd stay for a couple hours with me and Anne.  Anne's not flying around the room, don't get me wrong, just sitting up for the first time in a long time.  Her eyes are still half closed, she appears exhausted, she's in and out of contiousness, and her body is fighting the infection as best it can.  Her white blood count is elevated, not super elevated, but enough so that they know her body is fighting hard.

They say her kidneys are slightly better as evidenced by her increased ability to produce urine.  She had produced none overnight at home Christmas eve, and none for a couple days in here thereafter.  Yeah.

Here they've accomplished one goal of taking her off of the meds that were managing (maintaining/increasing) her BP.  Now it is a little elevated, running between 140 and 175 (on the higher end of that), but it's not driven by drugs.  A good thing. 

I reminded the nurse and doctor that her BP meds were discontinued when she was admitted, due to a low BP.  Now they have ordered a beta blocker, something that should help to bring her BP down some.

Yesterday I learned that they were treating with Heparin (blood thinner) to take care of a blood clot discovered in the inferior vinicava (sp??).  That's a vein near the kidney.

I asked when they'd be able to check the status of the clot, to see if it was shrinking, moving, or desolved, since it was found Monday night (they had forgotten to tell me).  They said the best way to check it is by a CT Scan.  They cannot do one of those tests at this time however, because her kidneys are not functioning well enough.  Reason being a CT Scan uses a strong dye, and the only way for the body to get rid of that is thru a healthy kidney.

Anne is 'afibrile' (sp??), which means she has no elevated temperature.

She is basically sleeping, resting, making a few comments to the peanut gallery when she awakens, dozing off again, snoring, resting, and fighting the fight of her life. 

I'm encouraged that they have been at liberty to say they think she is a little bit better, also that her BP is getting back to normal, and that her kidneys are functioning better.

I thank all readers for being there, interested and keeping up on how Anne is doing.  Thank you for your continued prayers.  It helps so much.

ICU Update, 4pm

Hi Readers,

Anne is doing better.  She is in and out tho, confused sometimes, etc..  The infection is being treated, and her BP is good.  She has good color in her face.

An unfortunate thing is that she's going to have her medi-port removed tonight.  It will be done in Surgery so she can be sedated.  It could be done bedside, but that would be with more of a local anesthetic, and more painful for her.

Aside from that they have found some fluid around her abdomen from the Hernia repair surgery.  It is normal to have this, but they want to extract some and test it for infection.  In fact, they will try to remove most of it while they are at it, using a needle.  This will also be done tonight while she's in Surgery having the port removed.  It's a "relatively small thing" to remove the medi-port, but I don't feel good describing it as such, what with all that Anne has gone thru already.

Pray for Anne tonight friends.  Of course we aren't thrilled about another surgery at this time, but there's really no choice, it has to be done.  I have talked with the surgeon and put him on alert, so he knows all of our concerns.  The rest is in God's hands.

ICU Update, 1pm

Dr. Tracy Mae came to talk with me.

First of all, she confirmed that they do have good luck in solving blood infection problems all the time.

The central line they put in Anne's chest last night is like a temporary medi-port.  They do not want to use Anne's real medi-port for fear that it might be the cause for infection.  The central line will only be used for a couple days, but they can check volumes and metrics they need to monitor thru it, and they can administer meds thru it.

They are consulting with Dr. Ebrahim today to consider removing the medi-port Anne had installed earlier this month.  Reason being it is plastic and infection can 'stick' to it.  Sounds like a 'no brainer' to me, unfortunately for Anne she likes having the medi-port, something to do with hating IV's, and they are no fun to have installed. 

ICU, and a little better today

Mornin (OK, good afternoon.  Details,details...)

Anne is a little better today, albeit totally wired up in a very technical environment, where she needs to be closely monitored.

Her legs have those pressure stocking mechanisms on them.  They installed what they called a central line in her chest last night right after she got here.  I will find out more about that today.  There's alot of wires connected, but she's resting comfortably at this moment, snorin' away. 

She'll wake up and ask what time it is, or ask for a drink occasionally.  She wasn't doing these things yesterday so I'm encouraged.

Anne  has a staph infection in her blood.  I haven't been updated by a doctor yet, but I asked for that, and the nurse told me they clear up infections like this all the time.

Her BP is getting better.  The nurse said the goals today are to work to get her off the meds that are stabilizing her BP, and to administer antibiotics in order to clear up the infection.  As I said, Anne is a little better.

It's not a comfortable room for visitors, nothing like the Gibson Pavillion, and I don't think that visitors would benefit Anne right now anyway.  I'm pretty sure she just needs to focus on herself now, and on breathing and resting.

Move to ICU

It's been a trying day.  Anne has had good care in Gibson.  When I got in here around 10am she continued to sleep for over an hour.  On waking up I noticed she was dead tired.  Her eyes were not opening all the way, and she seemed confused a couple times.  She wasn't herself. 

She had a couple of spasms of maybe trapped gas pain in her upper abdomen this afternoon, and just about climbed out the side of the bed in pain each time.    

Dr. Evans is the oncologist today in Gibson Unit 3, and it seems Anne has finally convinced some one that her tummy is in some serious distress.  She got thru to him and he began putting the wheels in motion to find out what is going on in there.  One of Dr. MacGillivary's surgeons came in today too, and I was impressed with her.  She seemed eager to get to the root of the problems too.


At one point this afternoon everyone in the area was suddenly in Anne's room.  There was alot of activity and apparent worry.  Doctors came out of the woodwork.  Her heart (remember, strong like bull) was racing, and her blood pressure was undetectable (due to the racing).  An xray was going on, a catheter being put in, and a doctor from ICU was invited up to observe and evaluate the situation.

Dr. Evans ordered more stomach xrays/ultrasounds, since that is what Anne complains about most.  Blood cultures have been taken and are being evaluated.  They're concerned and looking for an infection, which was unexpected to me since she's not had any elevated temperature.  It could be anything, but I am feeling more confident that they'll find what is wrong soon, and of course I pray that she'll respond to any treatment.  There's no doubt, she's fighting... 

Around 4pm up at Gibson it was decided that she belonged in ICU.  It scared me, but now that she is here she is being stablized, and I'm impressed with those taking care of her, and with the condition of the area.  It is on the ground floor of MMC and it's like new.

The people helping her are amazing.  They kept me out for about an hour as they got her settled, then Allie came to see me and took me in.  Anne saw me coming and waved at me when I walked in.  That was HUGE relatively speaking, for this day.  Anne's sense of humor is showing thru too.  She dozes in and out tho. 

They are treating her with antibiotics and I was sure to share her list of alergies with them.  She can only use a few antibiotics and they were on top of that.   Also, she cannot lay flat, which I worry about all the time, even at home (risk of aspiration), and they are aware of that.  One thing we don't need at this time is any self inflicted pain.  I feel she is in good hands, but I'm at the same time very concerned.

I think she is better than she was earlier today.  I think she can rest here in ICU.  The blood culture results take 24 hours.  We'll know more before long.

Merry Christmas to All

Merry Christmas All Readers,

Well, where do I begin?  You probably noticed the tone of last nights post.  I was feeling helpless and worried, and it may have worried you. 

Well, it was a rough night, and during that time I held off on calling the VNA nurse to ask her to come early today.  Then around 5am it hit me, just how poorly Anne was doing, not getting better, and whatever we were trying to do at home wasn't working.

I called MCCM 'hot line' maybe 5:30am and the on-call doctor called me right back.  I told Dr. Hedlund what was happening, and asked her to please 'pave the way' for Anne to be admitted to the Gibson Pavillion (Cancer Unit) at Maine Med.  She was agreeable and said, "Head on into MMC Admitting, and I'll see you at Gibson in a few hours".  Anne and I were so relieved that we would not be taking the ER route. 

It was tough to get Anne ready to go.  She was just unable to do it, being so weak and worn out tired.  Dressing was about all we could handle.  I knew there was no way she'd be able to walk down to the driveway and car.

I called 9-1-1 at maybe 7am and began negotiations with them to just get some help getting Anne situated in our own car.  They have a tendancy to want to 'take over' the situation, call the shots, and take and leave the patient at the ER.  But, I said "No, we only want help to get in the car".  I convinced them that from there I'd provide a smooth ride, safely find Maine Medical's front door, a wheelchair, and that we'd be all set.  They accomodated us, and I'm eternally grateful for their assistance. 

The VNA nurse (by the way) called when we were leaving the house and was ready to come over.  I told her she didn't need to, and I'm glad she caught up with me.
Anne and I have been here at Gibson all day in Room 555.  She is getting excellent care.  It's a huge single room.  You could eat off of the floors here.  What a relief ! 

She was dehydrated when we got here (even with all the extra water weight) so the fluids are running.  I'm impressed with Dr. Hedlund and all of the staff.  They understand because they specialize in taking excellent care of nothing but cancer patients.

They've taken a chest xray and a host of other tests since we arrived, checking Anne all out.  We don't have alot of specific news yet.  Her bladder is basically empty though, hence the fluids.  I'm confident that Anne is clearly better off and resting comfortably, in good hands, right exactly where she needs to be.

It's Christmas eve, after 9pm.  Anne is resting in bed. 

This has been a tough few days since I wrote on Dec 21.  At that time it seemed that Anne was bouncing back ever so slowly.  Since then tho, she hasn't been feeling well, and I have to say I'm worried that she hasn't gotten better for the past day and a half.  She has no energy.  She still has alot of excess fluid weighting on her hips.  The swellling in her ankles has gone down slightly. 

Since starting on the flulid pills late Monday Anne has lost between one and four pounds each day, except for one.  She gained a pound today, so I called to report that to the VNA nurse.  She said I shouldn't be alarmed if Anne doesn't loose weight every day.  She needs to loose about 15 more pounds tho to get back to her normal weight.  I think there must be something else that will help. 

I spoke to the nurse about my fears as far as how Anne's progress has slowed down.  That Anne is exhausted with the slightest activity.  Has alot of belly pain and some nausea, which we continue to try to manage with meds.

I'm concerned with Annes total lack of energy.  Today she came to lay on the bed in the afternoon and did not return to the living room.  Tonight when she got up to get under the covers I helped as usual and asked how she felt, and she said "I feel like that was alot of work". 

Food just isn't appetizing to her anymore.  I'm worried she needs something she's not getting. 

I considered taking Anne into the ER today, and we discussed it, but she didn't want any part of that.  She doesn't think they'll help her.  It's a lousy process anyway, to go in there, spend hours being checked by strange ER doctors, spend hours having to review your life's history with them so that they can take a shot in the dark or admit you into the hospital next business day.  I must say tho that Anne's life history usually scares the crap out of most ER doctors to the point where they don't dare to touch her.

The VNA nurse I spoke with today said the on-call nurse Anne (we know her) will call and come tomorrow.  She'll evaluate Anne and help us to line up any kind of support that Anne is not getting that she needs.  I'm worried that what we're doing for her at home now isn't helping her.  I entertain thoughts that Anne could get better care at the hospital, and that they would be able to help, maybe find something wrong that we don't know about and take care of it. 

Please pray that Anne turns the corner and finds strength tomorrow.  I continue to tell her that this will happen and she will feel better.  She is discouraged today.

Coasting....

Another week has passed us by since updating the blog.  We must be coasting.  Anne is getting better and better, little by little, as far as the surgeries on her tummy. 

We had a couple visiting nurses at our place last week, and on Thursday one of them discovered that Anne had gained 20 pounds of water weight, just since Monday.  Anne knew her clothes were getting tighter.  We knew her ankles were swollen when she came home from the hospital a week ago Monday, and we knew how much difficulty and pain she was having moving around, getting out to the car, etc, but we never realized how much fluid was in her body causing these problems. 

We mentioned the swollen ankles on discharge from the hospital, but no one there thought it was a big deal that day.  We called our PCP last Thursday very concerned about the swelling, but they had no time to see Anne until Tuesday this week. We negotiated for Monday.  Anyway, that's when we finally got scripts for fluid pills and compression socks, collected those things (the compression socks proving to be almost impossible to find) and they are beginning to help Anne with this problem.  She is finally beginning to feel some (not much) relief, eating slightly better, etc..

Anne is still reluctant to embark on more chemo treatments, scheduled for today, it being Dec 21.  She is apprehensive about it.  So, we want to delay this for at least another week.  That'll allow Anne more time to heal, and it will make for a more enjoyable Christmas weekend for her.  As you remember, the last chemo treatment lasted 3 days and made Anne sick for 6+ days.  Hard to look forward to doing that again, that's for sure.

There may not be much news from here for the next few days.  We hope you all are able to read this and keep up with Anne's progress, and we wish all of you a very Merry Christmas.  Our best to you and you're loved ones.  Thank you for your prayers.  It means alot and feels good just to know you're there.

Decompressing ??

Holy Cow, Anne came home from the hospital Monday, and now it's Thursday .  WOW.  Hard to believe.   

On Tuesday evening Anne indicated she was worried about chemo starting on Weds, and rightly so.  Thinking about it, it clearly wasn't time to start chemo, what with her stomach pain from Fridays surgery.  She was still recovering, and it would have been disastrous if she had had any dry heaves from the chemo.  So, we delayed those Dec 14 treatments, and rescheduled for a week later, Dec 21st.

That decision took the pressure off.  I feel as though I'm decompressing.  For 3 days now we haven't had to travel to town, something we've done every day since Nov 28.  It's been a relief for me, and Anne is in the same boat, and able to recover slowly but surely.

She walks using a walker right now, and it's a real challenge to travel out to the car, down the road, and back into the house.

This morning she got Erika's b-day present ready to mail, and the card, and she was worn out from that activity.

Anne still isn't eating very well, she isn't hungry, and she wakes up in the night with acid in her throat, and pain in her stomach.  Maybe she's afraid to eat.  She manages with pain meds, and if we time it right it helps alot.  Last night she moaned about every 4 hours, I woke and I got her a pain pill, and it was a good night.  No upset stomach.

This week off from traveling has been good.  I had arranged to have Weds-Friday off from work and it was a blessing.  Next week we have chemo treatments to look forward to.  Think about it.  It's a heavy load.  I wish it wasn't so tough on Anne.  We'll move ahead tho and continue on down this road, this battle, or what ever you call it.  There's no doubt though, it's worth it.  We're here for each other.

Monday, Discharge Day

Anne called and woke me this morning, all excited to come home.  They had ordered her some breakfast, and told her she'd be discharged.

She looks and is feeling better than she has for some time.  So happy for Fridays surgery, that it has helped her so much.  The other procedures last week didn't afford so much relief, and it was discouraging, but this hernia fix has made all the difference.

Anne called me twice more before I got here.  She's very excited to roll out of here.

I'll be giving Anne an especially smooth ride home.  They have taken good care of her in here, and she'll get more of the same at home.

More later friends !!
Thanks for reading, and for your kind thoughts and prayers.  Know that Anne is so much better today !!

Feeling better without the hernia

It's Sunday.  I got in here to see Anne around 9:45am.  I want to thank Bobby and Deanna for coming in last night between 5 and 7pm.  It helped us out alot, I got home early, and I know Anne was glad to see family.

Anne is definately feeling better, still with pain tho, and not ready to go home.  They haven't given any solid food yet because she hasn't passed gas yet.  Positive or Negative???  HAHA

She isn't using any IV at the moment, rather they've converted her to oral pain meds.  We need to be sure to keep ahead of the pain tho, by getting her the pain pills on a timed schedule.  Also, they aren't concerned about dehydration at the moment, so no fluids are flowing.  I'm concerned tho because her feet and ankles are swollen, but the nurses aren't too worried.

Anne was able to walk down the hall and 'around the block' today using a walker !!!

She IS getting better.  I can tell she feels better without that hernia, so our prayers were answered.

We're hoping she'll stay on plan with the chemo, scheduled to start-up again on Wednesday.  We may not be looking forward to it, but we know it's best to keep on schedule.

The nurse just came in and told us her potassium level is down, so, the IV will be used once again to administer some of that.

Anne is dozing in and out.  She enjoys watching the Patriots game, as usual for a Sunday.

Day after hernia repair

Happy Saturday everyone,

First of all, I want to mention that Erika called last night.   She survived  thyroid surgery yesterday.  She was in the OR just about the same time Anne was.  She said she couldn't talk long because her voice wouldn't hold out.  Stands to reason, after all I'm sure they 'slit her throat'.  So, I was surprised that she herself called up.  She sounded good, and it was great to hear her voice.

For Anne, she didn't remember anything that happened after surgery yesterday, or anything from last night.  Today I reminded her about Erika's phone call.

Anne looks as though she's doing well.  She has pain from the surgery, but Dr. MacGillivary said to expect it for a couple days.  There are 14 holes in Anne's abdomen.  I'm not sure, but I suppose 4 or 5 are like a 1/2 inch gash.  One of them was used for a camera, and the others are for the tools which move the mesh and position it inside to where it needs to be.  The rest of the holes are smaller, stitch holes from where the mesh is secured to the muscles inside, all around the area.

Anne has a push button she can use to administer pain medicine, as needed, to some limit of course.  She's used it several times since I've been here.  I've been told the holes in her tummy will look like a clock.

Anne told me she has been up and walking in the hall.  Good stuff.

I was thinking at home this morning, I don't ever remember Anne being released on a weekend in the past.  She may have insisted once, but I suppose if you're here on a Friday and don't get out, then chances are you might be stuck for the weekend.  She isn't interested in going home today anyway.  All good.  She isn't getting around that well yet.

They've changed her pain medicine from dilotted (sp?)  to fentanyl.  They did this because Anne was very confused overnight on the dilotted.  They said the fentanyl will be better as far as leaching thru her system faster, and managing the pain too. 

Hernia Repair Day !!

Hi readers,
We were up between 2 and 3am with Anne having pain, but this morning at 8:30 we arrived at MMC for the hernia repair, and Anne had pink cheeks and smiles.  Finally this day has come.  We're hoping she'll feel alot better after she gets past this surgery.  Then, there will be only one thing to think about, chemo-therapy.  As you know, this is the last of several things (procedures and surgeries) that have happened to Anne during the past 2 weeks.  It's been alot.

At 10:45am she was taken into surgery with her Dr., Dougald MacGillivary.  Yes, that should ring a bell, he did the esophagectomy 1 1/2 years ago.  This surgery was expected to take more than 2 hours.  Now it's 1:40pm.

Speaking of the devil, Dr. MacGillivary just came out and said it went very well.  He said Anne might be a very uncomfortable for a couple of days.  He said she should spend the night here at least tonight, and we'll go from there.

She'll be in recovery for at least 1 1/2 hours, then I can see her.

I'll write more later.

Thanks for being there, and for your prayers.

More to come....

Thursday Morning, a good one

Good day,
Anne is home from treatments this morning, she's had lunch, a pain pill, and is off to dreamland for the afternoon while I go to work.

The ride went well, and she's doing better than yesterday.  Real glad there was no snow on the ground this morning around here.  It's a nice day.

Tomorrow mornin we get to Maine Medical Center at 8:30 for her hernia repair surgery at 10am.  They will have fluids connected to her there, so no special hydration appointment needed tomorrow.  If she feels it's needed over the weekend I'll make those appt's tomorrow.

I'm reminding Anne to call Erika later tonight.  Erika is also having a surgery in the morning tomorrow.  Good luck Erika !!, and we'll talk later.  Thinking of you and love you very much !!