Hospitalized once again !

Hello all readers,

Anne was hospitalized this morning.

This all started at 1am Tuesday (yesterday) morning. That's when she awoke with breathing difficulties at home. After a couple hours with no improvement we called the 'rescue' and I followed Anne into the ER. After ER found nothing they sent us home around 10am and we needed to try to catch up on our sleep.

We followed up with Dr. MacGillivray's office in the afternoon and he ordered a CT Scan. With that, we headed into Brighton Medical for the CT scan at approx 3pm. We understood that the CT would help rule out any blood clot problems in the chest area. Dr. MacGillivary left word that we were to stay at Brighton until he had a chance to call and speak with Anne directly, however he was still in surgery. At about 7pm he was still busy in surgery, so his office sent us a message saying that he wanted Anne to go to the ER. We headed to the ER and then Anne was admitted to the hospital from there by 1am.

The word on the CT scan is that there are problems in Annes chest. There are questions about a potential for pnemonia in her lungs, also fluid around her lungs, and also for fluid around her heart. It's now about 1pm and we don't have a plan of attack yet.

Dr. MacGillivray was here this morning and told Anne this was unusual for this recovery. He referred us to a cardiologist due to his concern about the fluid around the heart. The cardiologist was here and ordered an EKO Cardiogram, to get more information about the fluid around Anne's heart. We do not still have any results from that or a plan of attack as of yet.

Anne is resting, I would say less than comfortably, because she can only get small breaths. She isn't visibly complaining or visibly in trouble, but I know she would be much happier if she could take a deep breath. She's also be happier if we had a diagnosis and a plan. Before much longer we should know what might happen from here on.

The cardiologist just told me that if there is much fluid around the heart that they can go in with a needle to drain that. I asked him about the pneumonia and fluid around the lung linings. He said that there was nothing crucial regarding those concerns. He said his team of residents will be making their rounds shortly, and thay they hoped to have the results of the EKO cardiogram by then.

CANCER FREE !!!

Good morning friends,

We saw the surgeon (Dougald MacGillivray) and the oncologist (Kurt Ebrahim) late this week and we're so happy to let you all know, Anne is cancer free !!

Dr. Ebrahim gave us the news as he helped us interpret the pathology reports that came out following surgery. He explained that the tumor (removed) had been reduced by the treatments to 1.5cm.. He said there were 15 lymphnodes in the region near the tumor, only one of those contained cancer, and that six of those were surgically removed.

We're so grateful we were able to seek and find these specific doctors early on. Dr. Ebrahim gave us undivided attention all along and because of his manner we just had faith in him because we were so comfortable in his care. If you remember, he told us he would go after this cancer with 'curative intent', and that it would be painful and sickening. He sure was right about that. And the surgeon (man of few words) was as metticulous and thourough as advertised.

It's just amazing to think that the tumor was found on Dec. 22, and here we are six months later, cancer free, this considering the ordeals that so many folks go thru with cancer treatment. We feel so blessed. This was no walk in the park, but comparitively speaking, we are just soooo fortunate.

Anne is doing better all the time now, however she is having troubles eating and digesting many foods. She wakes up coughing and choking many nights. She has stopped doing the tube feedings overnight, and she eats pretty much as she pleases, just smaller portions. She is trying to build up some endurance and is tired most of the day.

She has a real hard time breathing when she wakes up in the morning. Dr. Ebrahim explained this. She has alot more anatomy in her chest cavity now, because her stomach is taking up some of the space in there along side her lungs, sharing that space. It's important for her to continue to do the breathing exercises to help with lung capacity, etc..

It's going to be a long slow recovery, up to six months before she is anywhere near back to normal. She gets tired easily, needs alot of rest, and she needs to do alot of walking exercise now.

I know you will all be happy to read this news, and we thank all of you for reading and praying as you have done. Anne really appreciates all of your support, and again, can't tell you how helpful for her to know there was an army of you friends out there thinking of her during the past 6 months. Thank you so very much.

Ninth Day at Home, cont'd

OK

The Dr. MacGillivary's resident doctors have been here, and they were pleased with the blood work, and therefore don't think Anne was dehydrated or under nourished. Even so, we'll stay here until the fluid bag is empty.

They don't know why Anne's blood pressure was low this morning however. They guess it was due to doing too much in the hot sun. Anne was only outside for 5-10 minutes tho, so I think Anne's sickness this morning is mysterious, and I do think she was dehydrated to some extent. Maybe not under nourished tho, because the blood tests would have indicated that.

They are going to send us home with a new script, for Reglan. It is something that will move matter thru Anne's intestines faster. This may alleviate the belly pain Anne has been feeling this past week.

The doctors have set our expectations a little lower going forward too. Here we were expecting Anne to be a bit better every day, and to start flying around soon. They told us that isn't completely out of line, but that Anne may take a couple of months to get better, and to fully expect a lousy day occasionally.

So,,, shortly we'll be out of here, and back on the way home once again. When Anne is allowed soft foods again they said we should avoid fruit for awhile. No more single servings of applesauce or pears. They also want us to increase the amount of tube feeding again, and we'll get specific directions on how much how fast. She was also advised to try increasing the angle of her sleeping incline, and to do more walking than she has been doing.

Thanks for reading all, and thank you for your prayers and well wishes for Anne.

PS The residents said that in six months Anne will be eating and drinking just about anything she wants, just like before. We weren't too sure what to expect with that, what with no esophagus and all. They said in six months Anne won't even know she had surgery. I hope they are right !!
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Ninth Day at Home, back to the ER, Fri 6/18, 3pm

Hello everybody,

It has been a tough week at home for Anne. She has had several things go wrong, and just hasn't been able to bounce back as she would have liked. Here's an abreviated list of things that have happened to Anne since she got home.

As it turned out, she wasn't able to tolerate any soft foods, so on Tuesday (or was it Weds?) she was put back on clear liquids only, and the rate on her tube feeding was reduced from 60 to 30. So, instead of having 3 cans of food via tube (in 12 hours overnight) she has only been getting 1 1/2 cans.

Anne had some periods of belly pain this week. She has had to grin and bear it, or sit on the toilet for some time to get rid of it.

She sleeps on the incline pretty well, but wakes up to a cough, which develops into vomitting which empties her stomach every morning (except for Weds and Fri). She has vomitted once, sometimes twice daily since coming home.

Anne's stomach incision developed and ooozed puss from a small hole between where 2 of the staples were removed(she may have pulled it apart when vomitting. That is now being dressed and watched daily. The 'wound lady' says it shouldn't develop into a problem (knock on wood). It's a very small hole, not deep, and looks good now.

Her neck incision, healing from the inside out, is dressed by a visiting nurse everyday, and looks good. With this tho, the skin on her neck around the incision is irritated and sore due to the tape being applied and removed every day. We opted to use 'montgomery straps' to hold the dressing in place the past 2 days which has been a blessing. With these, tape stays on, and doesn't have to be put on and pulled off each day. That was a great suggestion from a friend, and very helpful.

Anne's bowell movements have been soft or liquid since coming home.

Since coming home Anne has not been able to take a good deep breath due to what we think is a pulled muscle in her back, probably due to the vomitting. That is why we spent last Saturday night in the ER. We wonder if there isn't a broken rib in her back, but it didn't show on the chest xray done in the ER. She winces in pain when she tried a deep breath.

Her shoulder, which was sore from manuvering around in the hospital bed, is feeling better now.

She has had a sore throat from vomitting.

Did I mention that we are back in the ER right now????

Anne had 3 nurses scheduled to come to the house today, one for the neck dressing, one for PT, and one for O(occupational)T. When the 'wound lady' came at 8:45 Anne was doing well. Then, as Anne walked around in the yard (10am) with Amber (PT) Anne began feeling weak and sick. Anne's BP was 88 over 60, and her oxygen level was down to 89. We called Dr. MacGillivrays nurse Jenn on the phone (as we have each day this week) and we determined that Anne was probably dehydrated and possibly undernourished. Keep in mind, she has had reduced tube feeding overnight for the past 2-3 nights, and been reduced again to clear liquids only (popsicles, chicken stock, jello, and water) during the day for the past 2-3 days. She was initially told to sip the clears slowly so as not to cough/vommit, and today they said she should have been told to 'push' them so as to drink a gallon a day. Those specific orders weren't clearly given the other day.

So now we're in the ER being hydrated. Anne is sleeping with the IV running, and I look forward to her waking and feeling alot better shortly.

The concern is that she cannot seem to keep any nutrition down, and that she could not tollerate soft food. We need to get past that. The art of eating without an esophagus is something Anne hasn't mastered yet, but she will. We don't know whether she'll be released from here today, or possibly be admitted again. Anne will be disappointed if she is admitted again and I don't look forward to that news, however, we need to do the right thing to get this situation turned around so Anne can recover. She is in good hands. More later...thanks for reading and thanks for your prayers.

Fifth Day at Home, 6/14, 11:30am, (trip to ER on Sat.)

Hi Friends,

Anne was released on Thursday. It was a very long day with many many hospital associates needing to see Anne before she left. It seems like they came out of the woodwork, and that it would never end. Very tiring. Finally we got home late afternoon. By the time they let her go she was ready to 'climb the walls'.

It has been challenging and tiring at home, but we are starting to feel better in terms of having energy. For the first 2 days we were both glad to be here, but completely exhausted it seemed. Some sort of 'crash' from an adrenaline rush of the past 2 1/2 weeks I suppose.

Anne has had some difficulty eating etc.. She's using the feeding tube overnight along with eating regular soft foods during the day. The first 3 mornings Anne woke up coughing and vomitting so we thought we'd have to contact the surgeon today, however, this morning she was fine. Progress is being made.

We had to make a trip to the emergency room at 6pm Saturday. She was having stabbing back pains and back spasms. We thought she may have pulled a muscle while coughing in bed, and we told them so. They checked her for everything under the sun however, and then sent us home after mid-night thinking Anne had a pulled muscle. They needed to rule out numbers of other things. Many tests, including EKG, Chest xray, and Catscan were done. There was no fluid around Anne's lungs, and no blood clot (which was their primary concern). It was exhausting, and as a result we were both pretty much 'junk' all day Sunday. We were unable to attend church, and it was good that no one came by on Sunday. I'm not sure Anne would have attended church anyhow, she still has an awful lot going on in terms of recovery.

Nurses come to the house frequently. The first one (Laurel) got us going with using the feeding tube Thurdsday evening.

Anne's dressing on her neck wound is changed daily by one of a number of visiting nurses that have come here since Thursday. The wound looks good as it heals from the inside out.

A physical therapist (Amber) comes twice a week, and yesterday was very helpful in terms of Annes back spasms. She returns on Friday.

Anne isn't walking as much as she did in the hospital with the back spasms quite troublesome and painful. With these, she moves around slowly, but she is getting better day by day. She is keeping up with various exercises given to her by Amber.

Anne loves her new mattress and adjustable bed. It was fit right into our regular King bed, next to my mattress. It's working out well for her.

Anne wants to let you know she is getting better, however healing much more slowly than she expected.

Sixteenth Day after Surgery, 7pm

Hello everybody,

Anne is being released tomorrow.

The first result for the c.diff infection came back negative today.

Her feeding tube was removed in the morning, and Anne ate small amounts of soft solid food all day. The tube is hooked up again for this overnight. Evening use of the feeding tube may continue at home. If she tollerates enough calories with the solid food while she's here, the tube may not be needed at home. This is to be determined before we leave tomorrow.

The dressing on her neck incision was changed by the wound specialist here this morning to determine the level of nursing care she will need for that when she is at home. They are using a dressing that will last 24 hours, twice as long as what has been used to date.

A mixup in meds this morning left her in bed for alot of today. It was a double dose of pain meds when she asked for anxiety meds, at least she thinks she asked for anxiety meds. Whatever,,,,, no worries on Anne's part.

Anne has some stomach pain from diarreah. The doctors aren't overly concerned with this, in hopes that the solid foods will resolve this shortly.

Anne continues to take laps around the floor on foot, but this is the first day with no tubes attached, none !!!!!!!!!

Nurse Nancy taught Anne to make a sundae with vanilla ice cream, peanut butter, and graham crackers stirred up together. I guess that was pretty good, but Anne couldn't finish all of it.

She is now having an egg salad sandwich, at least half of one.

Let's hope for the best for this overnight and tomorrow.

Thank you so much everyone for bein there.

Fifteen Days after Surgery, 3pm

Hey you guys,

Anne is doing real well again today, but as you might expect, when she feels well she raises heck, so right now she is snoring away after a morning full of having too much fun. She's usually a very light sleeper, but right now she is sleeping soundly and noises aren't waking her up. She must've gotten overtired from talking too much this am..

Today regarding her eating/drinking, she has graduated from small amounts of water to unlimited amounts of clear liquids.

Since Anne had some diarrhea last night her room now is under quarantine. The nurses have to gown up, and I'm not allowed to use the kitchen at this time. You might remember this happening when she was in the Gibson wing in January. You don't want to have diarrhea in this hospital and be using an abundance of antibiotics. If so, they immediately take precautions against the infection known as C.diff. If Anne is here for three more days, they'll test her each day for C.diff until there are 3 negative tests. She isn't allowed to have a roomate till then either, so maybe it has it's benefits. They have told Anne that the tests alone are not cause for keeping her in the hospital longer than she needs to be here. If you remember back in January, Anne had gone thru this regiment of testing and there was no infection.

An abundance of antibiotics can actually be the cause of c.diff because that will not only kill off the bad germs but it kills off the good germs too.

So we wait for the doctors orders to come in this evening to see where Anne stands. Her Physical Therapist person here said she is ok to go home, but the doctors have the final say.

Fourteen Days after Surgery, 4:00pm

Hello Fans,

Well, we don't expect that Anne will be flying out of here today or tomorrow. Don't be alarmed, she is doing super good, and without any complications.

One of Dr. McGillivray's team came in an hour or so ago. He said orders will be placed soon requesting that Anne begin the process of drinking something light, followed by something heavier, then eat something light, followed by something heavier like ice cream, then eat something even heavier. Any one of these he warned may bother Anne's stomach, i.e. cause nausea, so they've already given some meds in anticipation of that. Her body will have to process that which she eats and drinks. Then home.

We don't know how long this process is going to take, and tho we tried we can't pin the doctors down to any timeline. We'll just do what we gotta do to get thru it, and do our best to enjoy the ride.

Fourteen Days after Surgery, 9:30am

Good morning friends,

Spoke with Anne earlier and she is doing great.

Her Barium swallow test, scheduled for 9am, should be happening right now.

She is encouraged that she'll be coming home soon, however we don't have any of those details yet. She must pass the test, and then we'll surely see the discharge nurse. Training will have to take place before she is discharged too, at least we expect so, i.e. how to mangage the feeding tube, and how to take care of the dressing on her neck incision. Visiting nurses will be coming to the house as needed too.

If (and when) she passes the swallow test we aren't sure whether she will then be asked to eat anything while in the hospital. Of course if she eats, then the food will need to pass by all 4 cheeks before they discharge her. I kinda think they will want to make sure all of that works before she comes home, but we'll see. They know best.

I am leaving for town again now, so thanks so much for all your prayers, cards, visits, flowers, gifts, etc. etc. etc.... Wish good things for Anne this day, thanks.......

Thirteen Days after Surgery, 8:45am

Mornin everyone,

Anne called me first thing this morning, she's doing really well today and sounds wonderful. She has already had the chest tube removed from her left side this morning, and she's 100% better again. She is looking forward to seeing any visitors today.

She likes having the plan in place in front of her which Nurse Brenda wrote on her daily log board yesterday. It has encouraged her so much !!

She can hardly wait for the 'barium swallow' test tomorrow.

She has been listening to some talking books which she's found to be very enjoyable. Thanks to all of you for your cards, flowers, visits, well wishes, and prayers.

We expect some discharge planning to be happening tomorrow, and not sure what after that.

Twelve Days after Surgery, 5:35pm

Hello all,

Today Anne is resting comfortably. She had her right chest (drainage) tube removed this morning (after being told it wouldn't happen) and she immediately felt much better, maybe 50% better.

She took a one lap walk around the 3rd floor today too.

Anne's breathing is better now with the tube 'gone' from the right side. Breathing is still restricted on her left side of her chest. She will be having a chest xray tonight, and with a good result the left chest tube will be removed tomorrow. The thought of that brings on a big smiley face.

If the other tube is removed tomorrow there will be another chest xray tomorrow night. Nurse Brenda just told me the chest xray is done at least 6 hours after removing a chest tube to check and make sure that lung is fully expanded as it should be. They can look at the other lung as well to determine if there is any more fluid in it.

The Barium Swallow test should happen on Monday morning. I'm thinking if Anne passes that test there will be some discharge planning and home training going on on Monday.

So we have a good plan for tonight, tomorrow and Monday and we hope and pray for smooth sailin' till then.

The dressing on Anne's neck incision is still being changed twice per day, and Anne is still using oxygen and pain medications on a schedule. She still does breathing exercises to expand lung capacity.

Anne is much better off now, comfortable, and I have a feeling she won't want to be in here any more that what's necessary from here on out. It's been a long time.

Anne said she wouldn't mind if friends wanted to come in to visit tomorrow.

Twelve Days after Surgery, 7:15am

Good mornin,

Anne had an up and down day yesterday, but she sounds great this morning. For the first time, her voice actually sounded normal again when she called at 7am today. I think there's some real healing going on in her throat now.

I just called Anne and she asks that you refrain from visiting today. She said she may be up for it later on today, but right now she isn't.

Yesterday, noonish, Anne coughed up some red (or pink) flem, and she got worried and decided she didn't want to take the Barium swallow test. She said she knew she would fail the test. She actually got pretty keyed up over it, causing discomfort and some real painful spasms in her back. Her doctors went with her idea to wait until Monday to do the test. This swallow test isn't a very pleasant thing to go thru. Anne said that the material they have you swallow tastes just awful.

During the afternoon she got calmed down and resting comfortably again. She then was taken down to Radiology for a chest xray to check on the fluid in her chest. We could see by looking at the drainage repositories that her right lung had not drained any fluid for the past day, however the left lung was still draining. Anne would love to get the tubes pulled. They are very uncomfortable. The doctors actually told us they would probably remove the right side tube today (Sat), but this morning they told Anne they would hold off till Sunday and hopefully remove both then. These tubes run in thru Anne's sides just down from her armpits. They run between the ribs and inside against the diaphram, causing pain.

Anne stated to me that it seems her bladder is finally waking up from the surgery. She is having to get up more frequently to exercise/empty it. She's going to start sitting in a chair again today, and will start moving and walking more. She has not been walking laps since the tubes were installed, but she is perking up to 'get moving' now.

Nurse Jenn explained to me yesterday that the kind of setbacks we've had seem huge to us, after all Anne had done so well for a week or so following the surgery, however for a recovery from a surgery of this magnitude, such 'bumps in the road' are common and to be expected, and we shouldn't be discourged.

The doctors were in changing her neck dressing when I called.

On Monday we expect to be talking with the discharge planning nurse again. She stopped in for a moment yesterday, just to touch base before going home for the weekend.

I hope I'm not repeating too many things in the blog the past few days. It seems like the news is repetitive, and to be honest all of the activities are sort of blending together for me lately. Not only that, but there are many many staff working on Anne's case, walking in and giving their thoughts and opinions all times of the day, and with that nothing seems to happen exactly as you are lead to believe. You know how selective hearing is........I'd also like to apologize if I am not able to keep up with any of your phone calls.

Have a good weekend all, and thanks for being there and for your continued support. Anne looks great, with rosey red cheeks, and is feeling much better minute by minute.

Eleven Days after Surgery, 10:30am

Hello friends,

I spoke with Anne this morning and she is doing ok. She awaits the Barium Swallow test scheduled for today. I hope she was a good girl and studied for it.

Anne's dressing on her neck had been freshened up early this morning. Last night it was changed promptly at 7pm. The wound is looking good, however worrysome as it is open and healing from inside out as you know.

Anne's breathing is improving ever so slowly. She has picked up again with the breathing exercises, and she is weening off of the oxygen now.

She isn't complaining about pain in the abdomen area at all, and that wound is looking especially good where the staples were removed and replaced with the steri-strips.

This morning Anne said she felt wiped out. I think it's related to the day she had on Wednesday. It hit me yesterday, and perhaps is catching up with her today.

Anne asks that you refrain from visiting today because rest is of key importance right now. Thanks for being there, for reading, praying, etc. Anne knows there is an Army of you folks concerned about her and it means the world to her. Thanks again.

Ten Days after Surgery, 8pm

Anne looks great tonight, with red cheeks again. She is getting up and down now when she needs to. It is painful and she's more out of breath, but it's improving steadily. She still has a hard time trying to breath deeply. It will be at least 3-5 days before she will be able to do that.

Anne had a nice day of rest today. She said she may have slept 5 hours today. Not straight thru of course.

Yesterday was such an extraordinary day that just about everyone paid the price being tired today.

Her right lung lining may be all finished draining fluid !! It looks like it hasn't drained any since 2pm. Her right lung liner has drained some since the last reading at 3pm. If one side stops draining, they can remove the tube on that side. Anne says they'll take an xray and make sure before removing any of the tubes.

The incision in Anne's neck is healing. The dressing is changed twice daily on schedule. It's a big gash there now since it had to be opened up because of the infection. Dr. McGillvary came in at 7pm while the dressing was being changed by Nurse Jenn. He put gloves on and stuck his finger right in there, which caused Anne some pain, and he did that to make sure there was nothing pooling or collecting in there. He said it looked very good, and the Nurse said it looked exactly as it should. I may have already mentioned that Anne said it may take a month for this incision to heal from the inside.

The nurses have said that it would be ok for me to bring Dixie in to see Anne. I would if Anne wanted me to, but I just haven't had time to even brush her lately and get her all shined up. Anne said she also needs her nails clipped. Maybe Dixie won't visit the hospital after all. I don't exactly need any extra trips to town and back anyway.

Anne has been coughing alot, like a good girl, to clear stuff from her throat.

Anne is supposed to have another Barrium swallow test tomorrow. I asked her to get studying so she can pass it this time.

Anne wants to thank you all for all of your prayers, positive thoughts, and cards.