Nan Mustard's Recovery

This blog is a record of Erin (Nan) Mustard's recovery.

Friday, June 30, 2006

Friday evening - gradually better

Dear Friends and Family,
Nan is waiting patiently for some Zophram and perhaps something to settle her burning stomach. The liquid food that is being fed through the nose tube has been increased from 10 to 20 per hour and her body is beginning to notice it. She walked a short distance today after coming back from the visit to the ultra sound where the small clot was discovered. Her knees hurt a lot and she had to turn back on her walk. She sat in the chair for 30 minutes and then headed back to bed and was very tired. Later PT came and put her through an extensive set of exercises, a real workout. Then she went to sleep for awhile. Later she asked if we would help her sit up on the side of the bed which she did for awhile. Then she went back to bed and has slept pretty well or watched Law and Order on TV. She wakes and we talk or Dana and her talk for a bit and then she gets tired. She has had some pain today and was given a tiny bit of pain control which this time did not knock her out for the rest of the day, that is progress.
The nurse just came in with her Nexium since her tummy was sort of acid feeling. She also told Nan that a culture that was taken in ICU has turned out to be positive for something that grows in the nose. They are moving out her roomate now and will be wearing gowns from now on when they work on Nan. We asked if there is a solution or antibiotic and were told there is none. They say Nan could have come into the hospital with the bug or could have gotten it here. Anyway the bug does not represent itself in any manner and heals itself without meds of any kind. But it means Nan will have a private room the rest of the time she is here in the hospital and since its their problem I don't think we will have to pay the extra money per day. Since there are no private rooms right now we get this whole room for the time being. Nan is so tired that she is not elated or sad, just tired through and through. So far the Nexium has not touched her tummy ache, perhaps soon. Dana has left to head to bed early but I can't leave this early when Nan is still awake. We have been very impressed with the level of care here today, gentle, professional and compassionate.
Has Nan made progress today? Not sure, I think so due to all the muscle exercises PT put her through and based on her sore muscles as well.

We had a nice touch this afternoon. Jason and Jo called from South Africa. How wonderful to hear their musical voices over the distance. Nan talked to both of them for quite a bit. So we have had some real highs today. I got to talk to Nikki this morning and a couple days ago Nan got to talk to Keanna and Nikki both. That was a great conversation.

So another week draws to a close and as last week so this week, Nan is much improved, stronger, healthier, more herself and a week closer to her own home, her own bed and her own doggie Starr. God has blessed us this week in so many ways, kidneys are working better now, GI bleed has ceased, blood clot has been found and factored in, Nan has started walking, sitting up and gaining ground. Nan and I have been blessed with visits from Marilyn, Roxanna and Dana. Each of them means so much to us and helps us as we pass through this unusual experience. Thanks to Roxanna and Marilyn I have fresh laundry and even some new clothes, thanks to Julie, Jo's mom, I have lots of snacks and good food to eat, thanks to Sharon I still have spending money for meals. And thanks to all of you for praying for Nan's recovery. Your prayers have fueled a miracle for Nan and she is tired tonight but much better than a week ago. I'll get back here in the morning between 6:30 and 7:30 depending on how well I can sleep tonight. I have a lot more confidence in the nurses of this wing than I did last night and I think Nan is in great hands. She just got her Zophran and it will help her nearly immediatelly.

So for this friday, good night and God bless you.

love

tim and nan

Friday morning brings new realities

Dear Friends,
Another busy morning for Nan. After a night with some more sleep she awoke to continued pain in her left knee. So it was off to the ultrasound where they discovered a small blood clot, once again Nan's awareness of her body paid off. However there are no treatment plans to be implimented. Usually they increase the blood thinner but in this case no one wants to increase the chances of restarting the GI bleed when it has just stopped over the last 4 days. She got a Greenfield Filter about 2 years ago when we were at City of Hope on the Sugen trial. It is an amazing titanium device that fits in the main artery about tummy level in the body, has little arms that reach out and catch blood clots. It can be 80% full of clots and yet allow 100% of the blood to pass. Since she has that device on board already there is less concern about clots getting to the heart and lung.

Dr Greenberg, attending surgeon, was here, examined the incision wound and pronounced it better and told us that Nan was now in pretty good condition, that the main hurtle to overcome was getting her strength back. On that front Nan has already sat up in a chair for 35 minutes, brushed her hair, brushed her teeth, had a sponge bath, changed her Jonny, thats what they call a hospital gown here in the east and finally got to go back to bed. Then PT came and put her through the paces with arm and leg exercises to do several times a day. Later she will walk after she recovers her energy. Still no food or water through the mouth but a tube is carrying food through her nose to her tummy and that is doing well so far. By the first of next week I think her throat will be recovered enough to be allowed water and food. I think that will be a big spirit boost for her. I have rarely seen Nan as subdued as she is right now and she needs to find the fight to recover spirit again. That is my prayer today, will you join me?

I keep getting chastised for not listing the address of the Tracy SDA Church for tax deductible donations more often. I forget that only a few of the latest blogs show when someone logs in which prevents them from seeing the address of the church. Here goes: Tracy SDA Church, 2025 Holly Drive, Tracy, CA 95376 or the treasurer, Bob Miller, 161 Ramona Way, Tracy, CA 95376. Checks should have just the church name with a sticky note mentioning Nan's Recovery Fun. Also our new address here at the hospital is: Brigham and Womens Hospital, 75 Francis Drive, Boston, MA 02115 7-B Room 38

We ended up with the nicest roomate, she is from Maine and has a new hip going for her. We loved her almost immediatelly. The care level today is very good, our nurse is Dawn and she is kind and careful. Nan will sit up again at 1 pm and finally they came for their $5 and the TV now has more than 1 channel. Nan is pleased.

We hope you have a nice weekend and a good 4th of July. We intend to hold down the fireworks here in the room, just sit and walk which is plenty of excitement for us.

We are very thankful today for the blessings God has showered on us. It is the most wonderful feeling to hold Nan's hands in mine, look into her beautiful blue eyes, see the soft edges of a smile cross her face and realize that we have another chance of life. It is almost impossible for Nan to understand all that she has been through in the last month, she knows the basic facts but is still wondering why it is taking so long to recover, why she has so little strength, why everything hurts to move. She longs to board a plane for home, for the short trip to Roxanna and Ricks house, for escape from this place. It will come, it is on the way but it will take a while.

I want to get this blog out, sorry it is so late but we've been doing quite a bit of things this morning. Please pray that Nan will have the courage to keep trying, to keep exercising, to keep walking, sitting and trying.

Thank you for being so faithful to Nan in your prayers.

love

tim and nan

Thursday, June 29, 2006

She is on the move

Dear Friends and Family,

We are now moved to 7-B room 38 at least for now. It is a step out of the ICU and while we hated to leave those precious nurses and doctors behind this is an important step. Jenn is our new nurse here and she is already proving her self to be kind and wonderful big time. Nan is getting used to the small tube which is down through her nose and into her stomach so they can begin to introduce food into her GI system, one more tube and perhaps food and drink by monday, that is what they are saying now.

I wrote a blog but it got lost when the network system stopped for a minute. Anyway thats why I am writing this one. Nan has settled into her new room and is looking forward to walking, recovering and leaving SOON.

It was nice to be back in a hotel room with showers, frig and cool breezes. Our room has a lovely view of the hallway, that may have something to do with the lower price but since the only view I want to see is Nan getting better in the bed the room is perfect.

They are going to start feeding Nan a more direct food through the little tub at 10 CCs an hour at first and then see how she responds. The last time they tried this the stomach refused to accept any food and backed up so this will be interesting to observe. Of course we've moved ahead at least a week since the last attempt so things will probably be much better now. One tiny thing, Nan now has a much newer flat screen TV and since she is beginning to be more interested in watching some programs this is a big improvement over her ICU tv which had mostly pink and blue pictures.
We certainly hope and we pray that Nan can sleep tonight. For her recovery to work she needs sleep and its been scarce. Everyone says that she will sleep better off ICU so we will see. Nan's hematocrit continues to hold at 33 which amazing, it means no blood loss for the past 4 days, her creatin level is sort of holding and renal docs think she might only need a couple more times or less of dialysis. This afternoon she got a new pck line for TBN (liquid food) and they removed a central line. They also are concerned regarding her leg hurting a bit so will have ultra sound in the morning to make sure there is no blood clot there. Right now she is sleeping well after seeing the occupational therapist and being put through some paces. She will walk again this evening and sit in the chair for awhile then hopefully sleep well tonight. She is sure sleeping well right now. Dana has gone to the room to relax, Roxanna has driven back home and it is very quiet here in Nan's room. Her nurse Jenn is really great and is much the same kind of nurse as Amy but without all the years of professional experience. We will never forget the nurses of the ICU, they gave Nan great great care.
Prayer concerns this evening are the possible blood clot, being able to sleep and get some much needed rest tonight, kidneys learning to work better and throat healing so Nan can begin to drink and eat on her own.
Thank you for your prayers, for your emails, for your love and we promise to pass it on when we are back on our feet, God will lead us to a ministry of helping people somehow. This has been too many miracles to ignore in the future.
It is my plan now to travel to CA next Wed, work thurs and friday and fly back friday night. There are things I need to care for there that cannot be ignored and our clients have been very kind and understanding but there are legal issues that must be addressed by my presence in peoples properties.
So as things keep getting better for Nan and Dana and Roxanna both keeping watch over her I think I can slip away for a bit. It all depends on her progress and God's will.

Thanks for everything you have done,
love
tim and nan

Power walker hits the halls

Good morning
Nan Mustard, noted power walked, hit the halls of floor 7 this morning. She walked all the way out to the ICU waiting room before turning back. She walked strong and fast and impressed everyone along the way. When she got back to good old 59 she sat in a chair for another 30 minutes before taking a break in the moon bed.

Right now she is getting a small tube down her nose into her tummy to be able to introduce food to get her GI to start working before she can eat. After todays throat test they said probably by next week she will be able to eat and drink. To see her have to endure yet another insult, ramming the tube through the nose down her throat and into her tummy, not fun at all but she endured it with a firm determination like everything else. This is an amazing woman for sure.

Amy is going to be the one to take us over to the new room and it with mixed feelings we go. Nan has been treated with incredible compassion and professionalism here and has some wonderful memories of these very special nurses and doctors. They have taken her from the night she arrived with her life hanging by a thread to placing her on her feet out of critical condition to stable. This has been a lesson to the family is great caring, great care.

Well we are moving now so I will sign in later. If I have one prayer request it is that she continue to heal and that she can sleep tonight.

with love

tim and nan

They have found a bed for her on 7C, same floor but regular floor not ICU

Wednesday, June 28, 2006

A Sterling Proformance

Dear Friends
Nan has just made us proud tonight once again. When Dana and I came back from a bite of soup downstairs we found Nan ready to walk. She stood on her own, grabbed the walker and walked about 50 feet, turned and headed back to her room, sat in the chair the remainder of the 30 minutes and then stood and with the walkers help turned and sat down on the bed. Now she is about to sleep we hope all night. Her nurse is taking care of all the little items before going to bed.

Just wanted you to know Nan rallied and had a nice evening of conversation, walking, sitting and now relaxing.

Thanks for your prayers. Rick came through his day in good shape.

love

tim and nan

100 foot walk today

Dear Friends,
Dana and Marilyn Titherington arrived today about 11 am to see Nan. They got to be with her for awhile and then the PT lady came. She put Nan through her paces, lifting legs, lifting arms, moving about and then she walked in her special walking device. They thought half the way around the circle but instead Nan kept going and went out the doors to the unit into the hall and then through a back hallway to her room. It was incredible to witness. Then when she got back she sat in the chair for 30 minutes before heading back to bed. She has been pretty well in a very restless sleep ever since. In typical hospital fashion the barium swallow test which was to happen yesterday afternoon did not happen then and has not happened yet today either. Dr. Greenberg thought she might be able to drink or eat jello by the end of the week. Today Nan was allowed to swish warm water around in her mouth but had to spit it out, was not allowed to swallow it afterwards. Nan is very low emotionally right now, hardly speaks, hardly smiles and appears to be very tired. She had dialysis today but the tubes in her neck are not working correctly so it took a very long time to finish. She seems most contented to just be asleep and of course since she is sleeping during the day she won't be sleepy tonight again. It is frustrating to see time pass with no visible evidence of progress. However when she moves and walks or sits she is obviously stronger. Once again we need to turn a corner and I am praying for the next turn toward more strength and wakefullness. Nan seems depressed and I have rarely seen this in her before and it concerns me. Someone from pych came by today but I don't know what happened in that visit. I am hoping that when Nan can begin to eat and drink that she will be more happy and hopeful. This process of sitting by the side of someone who wants to be well so much but is too weak to do much toward getting stronger is very hard. I do not want to say anything that will hurt her precious feelings yet I sense she needs to take the next step mentally and move forward. I don't have a clue as to how to help that happen but I now God knows exactly what needs to happen next. Will you pray that God will move her forward with his infinite wisdom and compassion?

Marilyn is driving back home later this afternoon and Dana is staying. I am back in a room, 532 and it has a frig and microwave oven. I look forward to a shower and a bed tonight. I hope Nan wakes up this evening like she sometimes does and we can communicate some. Last night we began to listen to a book on tape together and then watched some TV later, we talked about things so I have hopes for this evening as well. She has had no pain meds to make her sleepy, nothing can explain this other than just fatigue.

I sure want to thank the team back home who are working so hard to hold things together. Each of them is having to do things that Nan and I usually do and its hard to do that on an extended basis in addition to the normal job description each has to do. We could not get through this experience without the help of every person on the team. WE THANK YOU.

It is now later in the day. Marilyn and Dana came back over from the hotel room to sit and chat for awhile. Nan woke up and was a part of the conversation for about the last hour. It was nice. Now she is dreading her next walking appointment at 8 pm. While she hates it she knows it needs to happen so she can get stronger and out of here. The shift just changed and Loren is on her way home now. Nan hates to see the nurses she knows head home. She misses them. Tomorrow Amy comes back and I know Nan will like that. Of course tomorrow Nan may finally get moved out to the main floor. She is ready for that I think as a big step toward home.

We are going to let Nan rest for a few minutes before she has to walk again at 8 pm. Dana and I are going to go grab a bite before the big event. Nan does not want to walk. This will be interesting.

Please keep Nan in your prayers as you have been. At this point I think we pray for general healing, for healing of the incision and for the kidneys to do a better job. Thank you so much for your prayers and kind emails. We read every one of them and treasure them.

with love

tim and nan

Wednesday morning report

Dear Friends,
Nan and I made it through the night. Nan did not sleep well last night and ended up watching TV for part of the night. I slept on the cot in the ICU waiting room and did fine, wasn't the Hilton but the room was dark, the bed was warm and the first time I woke was 4:30, then 5:30 and finally around 6 I got up. People were starting to be noisy in the hall and the room was needed for regular people who were visiting ICU patients. So up and in to see how Nan did. Dr. Greenberg, the covering surgeon was here and when she told Nan that probably by the end of the week she could drink and begin eating I thought Nan's heart would break. Her face was a mask of discouragement and defeat. Nan knows inside that she needs to avoid pnemonia which could happen if her throat is not ready yet to swallow properly but knowing it intellectually is one thing but accepting it after 3 weeks of nothing is totally different. Nan is a tough cookie but even people with extremely strong willpower can have moments of doubt and some down time.
If she could sleep well at night this process of recovery would be enhanced. It is true that she had several segments of sleep time yesterday sometimes sleeping for up to a couple hours at a time. So she is getting some rest.
Loren is our nurse today and she takes such good care of Nan. She is gentle, kind, professional and like Amy can insist that Nan stay up longer in the chair or get up to walk and Nan will do it. At this moment Mary is giving Nan a 3 and 1/2 hour dialysis treatment. The hope is that this may be one of the last needed as the kidneys seem to be doing a bit better. It now appears that Nan may be transferred to the main floor if they can find a bed in the area where Dr. Greenberg thinks is right for her. She will also have the barium throat study to see how her throat is swallowing at some point. It was supposed to be yesterday but things don't always happen on time here. Nan has a pain going on in her left leg, something that has been there but is worse today so Loren will let the doctors know. We need to be especially careful right now since she had a couple days without heprin and she could be getting a blood clot. Oh boy the challenges facing this dear woman.
She is now well into her dialysis and the machine is now behaving. At first the lines were not working well and so it was start and stop. The lady today is not impressive for her personality like all the other dialysis people have been. She is competent just not very social. To get things working she took away Nan's pillow but after awhile I noticed that Nan had moved the pillow back into place. Dialysis makes a person cold since it has a unit of blood out of the body at room temperature at all times during the 3 and 1/2 hours so we need to keep Nan's blankets around her to keep her warm. Thats my job.
I think we need prayers today for us to stay the course. It has been a long time and Nan and I are not patient people at all. We are used to doing things, not thinking about them and just lying here for days is really hard to take.
Dana and Marilyn will arrive between 9:30 and 10 this morning and that should give Nan a boost. We appreciate how supportive our families have been to us and some of you have been so wonderful in your daily emails of encouragement and hope. The cards are carefully read and set up in the room and phone calls are nice too.
We ask that you remember Rick today as he faces his medical day in Houston and also our friend Judy.

Thanks for your prayers and concern,

lov
tim and nan
PS no new room number yet but the mail room will find her where ever she is moved.

Tuesday, June 27, 2006

A very good day!

Hi Friends,
Nan is heading to lala land now. She has had a very big day today. On this day she walked 3 times, sat in the chair 4 times for a total of about 2 hours up and made her first phone call reaching Nikki just after she left work this afternoon. Her fingers are gradually growing stronger so she can push the buttons. This afternoon Dr. Greenberg came by while Nan was sleeping to tell me several rather important things. 1) She considers the bleeding GI to have a scab at this point since Nan has not had to have blood for 3 days and has held her hematocrit at 33. She said if Nan was losing blood she would not have held her hematocrit. 2) Nan will be leaving ICU tomorrow morning for a regular room of the dr's choosing. She does not want to her to go just to any ward, she has one in mind that she things will be most helpful in meeting Nan's special needs. 3) Nan is to receive a special barium throat examine which will determine whether she is swallowing correctly or not. If she is then Nan can begin on liquids but very carefully at first since the Dr. does not want anything to dislodge the scab in her GI. 4) She says Nan has made remarkable progress and will rest better in a regular room without the constant 24 hour bustle of the ICU.
We will miss the ICU and its wonderful nurses. This place is manned by angels in scrubs. We have been in a place where caring people saved Nan's life again and again. We will never forget and we thank them from the bottom of our hearts.
So tomorrow we move forward, forward toward the door of the plane coming home. Forward to more healing.
Dana, Nan's sister, has arrived in Rhode Island and Marilyn will drive her up in the morning. I will move back into a hotel room tomorrow. I found out why no rooms tonight, the Mets are in town and no one has any rooms available. Loren, Nan's nurse today, started the process of finding me a cot this morning knowing that it might take a while. About noon a cot showed up and now I'm going to take that wonderful precious cot and roll it to the waiting room here near ICU and settle in for the night. ICU will supply a pillow and blankets and I'm set. God does provide. Several people have responded that they knew of places I could stay tonight here in Boston and I appreciate that very much but without a car and not knowing the city it is better for me to stick close to Nan. Thanks for your kindness friends.
I have been told that people need the address of the hospital. It is Brigham and Womans Hospital, 75 Francis Street, Boston, MA o2115. I have also been asked to supply the address of the church in Tracy where donations can be made. So here goes: Tracy SDA Church, 2025 Holly Drive, Tracy, CA 95376 or Bob Miller, Treasurer of the Tracy SDA Church, 161 Ramona Way, Tracy, CA 95376.
Nan and I want to thank you so much for your specific praying for Nan's bleeding GI. At this point it appears that God has once again helped Nan stop bleeding. Thank you so much Lord and thank you friends and family for being prayer warriors.

Good night and God bless
tim and nan

ps Rick has extensive surgery in the morning and needs our prayers, also our friend Judy in Tracy needs our prayers.

Tuesday morning

Good morning friends and family,
Nan was sitting upright and strong in her chair this morning at 6:30. She stayed in her chair for 30 minutes, brushed her hair, brushed her teeth, got to rinse her mouth out but had to spit it out, bummer. After awhile she started to attempt to rise from the chair and head for bed. It was all I could do by putting my head forward to hers for some quiet moments to persuade her that she needed to wait awhile yet and then wait for the nurse to guide her. She certainly has the will just not enough strength yet to do all she wants to do. Her nurse reports she slept very poorly last night and we hope she can get some sleep today in between walking and chair stops. Nan is not very happy right now. She is very impatient with the length of time it is taking to get better. She is very frustrated that she cannot eat or drink yet. One cannot understand how important little things like being able to have hot tea is until its been 3 weeks and you have not been able to have anything to eat or drink. This is a very big deal to her and I know she will feel much better when she passes that test and can feel more normal again. Loren is her nurse today and she just suggested to Nan that perhaps she could have someone from the pych staff come and talk with her. I'm not sure how Nan responded to that suggestion. I think it may be helpful since I don't have a clue as to what to do to help her. I just constantly express my pride in what she has accomplished, give her lots of positive comments about how good she is looking, comments about how nice it will be to walk out of here and head home. She talks of home constantly and getting on a plane. Can you pray that God will continue to guide in all things for us and for Nan's state of mind.

I am in the lovely state of affairs that tonight I have no hotel room. I was warned when the Dana Farber lady allowed me the $30 room that after 11 days I would have to move, I thought she was saying move to another room. She called yesterday to tell me that I would have to move out of 530 and for one night there would be no room. When I checked at the desk to see if I could book another room I was told there arn't any tonight. Well I have a room with lots of things that have been collecting, food in the frig and only two tiny suitcases since I only planned to be here a few days and packed in 5 minutes. So in a few minutes I will begin the scramble to find a room for tonight. Of course I get to move back into the same room 530 tomorrow and have it for several more days. So once more there is a bump in the road. Sure is unnerving to have to think about the room stuff when all I really want to do is care for Nan here in her room. At worst case I will sleep here in Nan's room in a chair and put all my stuff in a storage room at the hotel. Its been done before. Before I could sleep in the rental car but now there is no rental car. Its not fun being away from home and support but every time I start to complain to God about myself I shift to remember that its sure not fun for Nan to have gone through what she has and be stuck to bed for 3 weeks today. I truly have nothing to complain about whatsoever.

We are facing some crucial issues back home and the lack on income on my part is starting to catch up with our ability to pay bills that are due. I thought I might explain how a small business works, at least how our small business works. 18 years ago we started Discovery Appraisal Services. For several years Nan and I as licensed appraisers did all the work, we logged orders, inspected properties, wrote reports, printed them out and shipped them, we did it all just the two of us. Then as more work came in we hired someone to help with the office. At first we had the office in our living room. Gradually we began to hire people to help us appraise who we trained. Nan has turned out to be a tremendous teacher and reviewer and helped several people to become appraisers. When she and I prepared an appraisal all the income came to the company and we paid bills and took profit out to cover our own expenses, house, cars, food etc. Our appraisers are paid a split of the income and the amount we pay depends on years of experience, willingness to take hard distant assignments, ability and whether the appraiser had gotten the order on his or her own or had received the assignment from our clients. About 3 years ago after Nan's last surgery and while she was still in the hospital we decided together than Nan would retire from active appraising. Her strength level was diminished, her ability to drive long distances was compromised and we felt the best thing we could do for her was to let her stay home or travel as she felt not have to struggle with getting inspections and appraisals done. Nan kept on with doing the books and keeping the checkbooks up to date, paid the bills and did a balancing act with the income that was left. Our personal income went down because I was doing the appraisals on my own. Yet we discovered that if I worked smart and about 12 hours a day we could financially survive. That has been our situation for the past couple years. During that time as we battled her GIST cancer we found ourselves more and more either at hospitals, traveling to Boston to Dana Farber Cancer Institute, MD Anderson in Houston and finally dozens of overnight trips to City of Hope in southern california where she was allowed to be in the Sugen trial. So for 18 months we made a trip to City of Hope at least once every two weeks. At first the tickets were only $49 but then the prices rose until it was not uncommon to spend several hundred dollars for the overnight trip. Our people in the office were great about scheduling my appraisal appointments around these trips. In addition we had Dr. appointments for at least one day a week either with the oncologist or her regular doctor. In the fall she became so weak that we could only travel with a wheel chair. Beginning in September she began to receive radiation on one tumor that was causing nerve and blood vessel damage in her right leg. So for 27 days we traveled to Concord, about a hour each way, for radiation treatments. Most of the time she rode in a bed we had created in the back of her Honda Odyssey van. We had help with these trips, Lammerdings came down from Sacramento, Nikki was able to help and Roxanna came out from Conn. to help. I was amazed that the Lord seemed to make the appointments work out for afternoon, after I got back from taking her to radiation. Needless to say our income was effected in a dramatic way. Nate Frank assisted with the writing up of the reports after I had inspected the properties and that helped a great deal. When the Sugen no longer worked for Nan we began to scramble to find the next thing to do to control tumors that were beginning to grow at an alarming rate. One tumor was visible and was the size of an grapefruit. Nan had to get larger pants, 2 sizes larger, just to wear over the tumor. It seemed like the tumor was larger every day and it filled me with dread whenever I saw it. When an opening happened at Dana Farber Cancer Institute in Boston we jumped at it. We flew back to Boston and I stayed with Nan for 10 days in a nearby hotel as she was evaluated and accepted into the IPI504 phase one trial. That meant that Nan had to be in Boston or the area for 2 weeks at a time and then was allowed to fly home for 10 days before returning to Boston again. Our dear friends Roxanna and Rick who lived 2 hours away in East Lyme, Ct were kind enough to allow Nan to live with them during the 2 weeks in Boston portion of the trial and then took her to the airport so she could fly home for the 10 day off time. However Nan only got one home trip because the next off time was spent in having Dr. Steele attempt to internalize her nephrostomy tubes. That attempt did not work out but she lost her 10 day at home time. I was back here in Boston with her during that time for the first week, Nan does not get operated on across the country without me being with her. Once again I was away from work and generating income but it was the right and only thing to do. After I flew home Nan went to see her friends in N. Carolina but soon developed severe bowel blockage on hearly a daily basis. When she was put back into the hospital I flew an expensive red eye and was in her room the next morning at 6 am. I have been here ever since, now nearly a month. Our staff and appraisers have been totally awesome and have worked very hard covering our absence. They have done everything possible to hold the business together. What they cannot do is generate in come in the same manner as I can when I am seeing properties on my own. So that is our problem right now. I've been here a month and generated 0 income. Nan and I have asked God to take control over everything and we sleep at night knowing that He will. Yet I am torn by the need to return for at least a couple days to conduct a little business and the more compelling need to remain at Nan's side. Right now it is becoming clear that Nan will go to the main floor either today or tomorrow. They consider her stable and doing quite well. Dana arrives tomorrow from Texas and Marilyn will bring her up from Providence RI since that is where Southwest flys.

I am about to head to the hotel to beg at the front desk for a room for the night. If not they will bring a cot into the waiting room here at the hospital so I can sleep there. No matter, we will get through all of this in time.

I would like to ask that when you have the time please drop Nan a card. She really enjoys cards and having them around in the room. It reminds her of home and she sure needs that big time.

In a few minutes PT is coming to help her walk again and Nan has good energy today in spite of not sleeping very much last night. She is almost ready to use her cell phone now, was pushing buttons but not quite enough energy to get them fully pushed yet. Same with TV remote, that gives you an idea of how weak she presently is.

Well things are starting to move this morning so I'll write more later. Please keep Nan in the heart of your prayers. Her bleeding appears to be less and there appears to less concern from the GI team. Just not sure yet. Her creatin is going up so slowly now that they have put off the dialysis today, another good sign.

Thanks for your caring and prayers,

tim and nan

Monday, June 26, 2006

Monday evening report - better

Hi Friends,

I am at the hotel, Nan wanted to go to sleep around 9 and I have been waiting to use the lobby computer. What was a very quiet and sleepy day got somewhat better this evening. ENT came and put a nice little probe down Nan's nose. As you can imagine she did not love that moment. Her vocal cords are fine and she is getting better. However her throat and surrounding area are very sore and red. So he prescribed Nexium, double dose to help the problems. She struggled with finding a comfortable position in the bed. They had her on a double dose of beta blocker to slow her heart down and they sure did. Down to 55 to 65 most of the time which of course was setting off the alarms again. I hate the sound of them. Her output from the colostomy is half what it was yesterday which I guess is a good thing. Her hemocratic (sp) number is 33 tonight, up from being 25 or 26 for most of the past 3 weeks.

After the walk and chair sitting this morning Physical Therapy came calling and put her through the paces. They were generally encouraged and suggested she sit more upright in her bed whenever possible. She is doing well on all counts and may go to the main floor tomorrow out of ICU. No one seems to know exactly when at this point.

Right now I am heading to bed and I want to ask that you continue to pray about Nan's overall condition and especially the bleeding as this is not resolved.

We got the nicest packages from Jo's mom Julie today. She sent about everything someone could want in those two boxes. This was very sweet of her.

Thank you for your prayers and please remember Rick as well as he faces his health issues.

with love,

tim

Monday morning blues

Dear Friends,
Nan is more subdued today, she had a restless night but was in the chair this morning from 6:30 to 7. After a host of doctors and soon to be doctors have dropped by every few minutes she requested a chance to walk. So our nurse located the special walking device and unplugged Nan from just about everything and Nan stepped up to the device and walked out of her room into the main room and would have gone further but the nurse reminded her that she had to walk back so she turned around and walked back to the bed. Then she sat down by herself and rolled onto her back, totally exhaused. Since that time more doctors have come to visit, they are all kind and some come by to check in just out of personal concern. They stop and encourage her and then she sleeps some more. She has talked on the phone, checked out a couple emails from family and friends especially enjoying reading the one from Jason and Jo who are in South Africa.

Right now she is trying to sleep but normal business in the main area is fairly noisy and its hard to sleep over that for long. The bleeding output is down again but it has not stopped yet. I think we are in another day of holding to see if the body can heal before the next decision is made. Her hematicrit is now 32 which is her highest in years and that should help her heal, help her heart to be happy and help her have more energy. I tell you she was pretty impressive in the walker device. This lady has come so far, so far indeed.

Her creatin is gradually climbing but at a slow enough rate that they are holding off on dialysis for another day which is nice for her. Hard to rest when you see your blood out in tubes going to and from your body to a huge machine with whirling wheels and motor sounds.

I lose my cheap room for one night tomorrow night and have to move to another room for a night and then back again into the cheap room. Sure helps to be able to cut costs like this.

There is one person that I don't think we have mentioned in the blog. He is Travis who is the patient and program coordinator for clinical trials at Dana Farber. He has been so helpful over the past few months and has often gone out of his way to help us as we have dealt with being so far from home. Just wanted to mention him and thank him. Dr. Ng has been so faithful about visiting Nan's room every day since surgery. It is a long walk to reach Nan's room from where Dr. Ng works and yet she comes faithfully and we love to see her. Dr. Morgan has been our hero through our entire time of coming to Dana Farber. His gentle touch and extensive medical knowledge has served us well and we appreciate him very much. Michelle, the physicians assistant to Dr. Bertagnolli, our surgeon, comes every day and we love her visits of hope and interest. The nurses that give personal help and attention to Nan are the best and time and time again have been advocates for Nan's health and recovery.

The reason I like to stay so close by is with Nan's improvement from critical to stable status the nurses do not have to hover over her like they did earlier and are often helping other patients. I can catch little things like her being covered enough to stay warm, or to get her suction device if it slips away from her or hear her when she wants to say something. In fact it is a very good sign that nurses no longer feel they have to hover over her like 3 weeks ago. She is a much improved patient now.

All Nan wants is HOT TEA. She tries it on everyone that comes in, hoping to catch someone who does not know she can't have fluids. When she does get to drink she will be a whole lot happier. At this moment I am seeing a warning flash on the screen that says room 59 has low heart beats so I checked with the nurse next door who also has her stats on that computer monitor and says she is fine. I really don't care if I ever see a monitor readout again warning of heart misdeeds, as I have seen thousands of such messages in the last 4 days about Nan's heart.
Cardiology was here, looked over the stats and basically have said, don't worry. Right!!

Nan is so sleepy today, perhaps it because during the night she was in some lower back pain so she was given a tiny amount of pain control, any pain control meds really send her back into sleepiness.

Well speaking of sleep, I'm going to try some myself. Short nights and long days are getting to me a bit. Today we look forward to a care package from Julie, Jason's wife Jo's mom. She has been so sweet to us with emails, calls and now a care package coming. Thanks!

For now we need to keep praying for the bleeding to slow and then heal to a stop. It has not done so yet.

I just asked Nan if she wanted to convey a message to you all, she took her right hand and did a wave, she wants to tell you Hi!
until later,
thanks for your love, your prayers, your emails and your support,

love

tim and nan

Sunday, June 25, 2006

Its been a good sunday!

Dear Friends,
Its about 6:40 here in Nans room at the Brigham and Womans Luxury Suites. This has been a good day for the first lady of recovery. Amy has been kind enough to help Nan sit up in the chair three times today, each time Nan took several steps to and from the chair, helped by moving her legs over the edge of the bed and held her head up high while in the chair. Her improvement in sitting up today compared with the prior two days is nothing short of remarkable. She is making faces, smiles, uses her eyes and even speaks words using her soft voice. Her skin tone is excellent and she looks great with her newly washed hair and beautiful face. She keeps trying to con one of us into letting her have hot water or hot tea but until she passes the test of swallowing she cannot have any water, ice chips or tea. The reason, something could get into her lungs causing pnemonia. She has used every trick in the book to try to get her way and is not very happy when she does get her tea or hot water. For example, I was praising her for her hard work and strong will. She had me leave down and whispered, if I am doing so great then give me hot water. So Amy relented a bit, poured a cup of hot water and using a green sponge on a stick gave Nan a taste. Yet even with that she coughs so she may not be ready yet for swallowing. Her throat was so damaged by the 15 days of respirator and suction tubes that it may take a few more days to heal up.

Nan did new things today, she read all the cards that have been mailed, read some emails, read a little of the newspaper and watched some TV shows. In between she has slept, talked on the phone and interacted with Amy and me.

I am so proud of her for her accomplishments, her courage, her sense of humor, her willingness to work hard and her demands that we get ready to fly home!! This is no usual lady if there is any such thing. She is a fighter and has extremely strong will power. She expresses great kindness to me and has urged me to sit on the bed, she thought there was enough room in the bed for me!!

Hanging over this happiness and progress is the threat of the bleeding from her GI tract. Amy has charted the colostomy output today and has determined that the amount is less yet the bleeding issue remains a huge concern of everyone involved with Nan's case. We solicite your prayers seeking God's intervention in her behalf. God has stopped her bleeding on the night of the original surgery as people prayed and we desperately need Him to do it again. If it sounds like I am a broken record it is because this is the most important issue she faces at this time.

I have learned that a recovery from a difficult surgery is not linear. It moves in fits and starts, one day is amazingly good and the next is disappointing and depressing. Some medical issues will take a very long time to solve while others will be finished by the time we leave the hospital. We remain firmly convinced that we are where God wants us to be, that this surgery is no accident, that we are in the hands of the worlds best GIST experts both at Dana Farber and here at Brigham and Womens, that our surgeon has hands blessed by God and that the nursing care in this ICU is the best short of heaven.

We both long for the day we can come home and be with our family, go eat with Nikki and Steve, have Keanna over for sleepovers, go visit the cool weather surrounding Jason and Jo by the ocean. We long to board the plane, however we have many bridges to cross still and a recovery process to complete. Your support with prayers and donations is making this whole process possible and winable. We will never forget what you have done to help us through this impossible situation.

love from the east coast

tim and nan

ps please ask God to heal the bleeding!

A good sunday morning

Hello again,
Nan says, get me out of here!! Find a wheelchair and lets hit the road, I want to fly home with you. Those are fighting words, just what we have been waiting to hear.

When I called in this morning at 5:30 I got only good news. Blood was holding at around 30, blood loss through the colostomy was less than 1/3 of the amount lost yesterday during the same time period, fever had dropped to 98., white count was not rising, creatins were low due to the dialysis, Nan had slept most of the night, heart was still doing its strange beats but blood pressure is holding well.

When I got here Nan was more alert. Since I have been here we have read cards together and she holds them and looks at them, we got a sweet letter from a long time friend, Laurie Dunston which touched us both deeply. She asked for me to bring the pictures of Keanna over for a closer look and she repeatedly mentioned getting on a plane to head home. She does not want to hear that it is going to be awhile for her recovery to complete, she wants to go now. After we talked for a bit two doctors from Plastic Surgery came in and told me they had already been her to clip away bad skin around her incision and to repack it. So they proceeded to open up the gauze and take another look and then repacked it. In a few days they are going to use a vaccum sponge, a new creation which will help the healing process. It is cut in the exact shape of the open incision and then placed in the wound. After that vaccum is applied and it is supposed to do wonders.

Nan's primary challenge at this time is the GI bleed. While the output is much less than yesterday there is still blood coming from somewhere which needs to heal up. The GI people are willing to wait a bit to see if the body (and the Lord) can heal itself and avoid further invasive procedures like another scope attempt or if that was unsuccessful another surgery. No one wants to consider doing surgery when Nan has been through so much already.

It is not overstating to say that Nan is much more alert and healthier today. She slept well last night, has been in the chair for 45 minutes, took steps each way to and from the bed and when she returned to bed Amy rewarded her with a shampoo right here in the bed. Nan loved it. Amy was very creative but managed to do an excellent job of washing, conditioning and blow drying her hair and then styling it. Nan loved it as you can imagine. Then she rewarded herself with a nap. It was well deserved. She talked to Roxanna on the phone this morning and looks great. We are thankful that a nice day is lining up after the difficult day yesterday. So far so good. It is overcast outside and rainy but it is warm and cozy inside. Nan keeps wanting me to sit on the bed beside here and thinks there is enough room in the bed for both of us. She is feeling better!

I've had my oatmeal and juice and now need to remember to drink water, water, water. I have my medications all figured out with the local pharmacy now and am getting set. Nan and I are both moving toward a nap but right now she is sitting up pretty straight in the bed with two pillows and drooling over Harrison Ford in some movie. She might not agree with the comment.
Her skin is beautiful and they have raised the level of red cells in her body to a level that gives her much more energy and mental alertness.

The prayers you have been sending heavenward are working. At this point the bleeding is much less but Nan still needs more help until it stops completely. We appreciate the prayers that were said last evening, please keep them going.

With love and appreciation

tim and nan

Saturday, June 24, 2006

Our email address

If any of you want to email us directly us mustards@jps.net. Rita, can you please email us directly so we can reach you. thanks so much

10 pm Sat. evening in room 59

Hello again,
Well friend, its been a long day with many ups and downs. At the moment Nan has just been turned by a group of three, had her back rubbed with lotion, got fresh linens and is now getting her incision redressed with saline and gauze. They all seem to know exactly how to do it and it is healing in its own slow way. When I got back from a quick break over to CVS for my prescriptions I found that once again we had a new wrinkle. Nan had a fever of 102.4, highest since the first week after surgery. I felt the room was warm and Nan had 2 blankets on. So they took it down to the sheet and waited a bit. The temp was then 101.4, not great but better. Even better news was the most recent blood test which showed no increase in white count from its previous 14. So right now the thought is that perhaps the spike in temp could be caused by the recent transfusion of blood. Her heart continues to misbehave and her pulse is too high on average. However they just moved some of the sensors that tell the screen what the blood pressure is and suddenly we had a much better blood pressure, up nearly 20 points. Also a heart factor that cardiology wants to be 8 jumped from 1 and 2 up to 9 or 8. Nan is breathing on her own now without oxygen assist and the last 6 hours yielded much less output of the colostomy, down from 4 hours and 700 ccs to 6 hours and 300 cc. So for now we are having less bleed from the GI. That was in spite of sitting up in the chair, standing up and walking around a little. We sure need to keep praying about the bleed, that God will use his scope and repair what is wrong.

Finally it is quiet in the room, the incision has been dressed, drains dumped and Nan is settling in for the night. A little while ago Nan was able to talk to her brother Joe, her sister Dana, her sister in law Sharon as I dialed and held the phone to her ear. That seemed to give her some peace and calm. It has been a troubling day for me and I know it has been for Nan as she hears everything that is discussed by Doctors and Nurses, good and bad. Through it all she has been a brave trooper, holds her dignity and cooperates even when to do so hurts a lot.

I am in awe of this gentle woman with a heart of a lioness, a faith like the Bible greats, a resolve like steel and a tenderness that melts hearts. Her baby blues are very hard to argue with and if I happen to cause tears well its all over for me. When I told her about my conversation with Nikki and Keanna today, how they were enjoying the Oakland Zoo she smiled and responded like she always does when the kids and Keanna are mentioned.

Truly Nan and I are very blessed, we have great children (adults) who married great pardners. Nan's family is amazingly supportive and loving. My brother Jerry and his wife Donna are so special to us. Our vast array of friends located around the world is lending us support that is humbling and very helpful as the long hours pass. Our home church family is amazing and John and Karen Cress who now pastor in Denver remain our prayer warriors and close friends. I have found that a true friend is a person that I can call anytime day or night and its OK to do so. My friend Art Diaz is an on call buddy like that that I can dial up any time and its OK. George and Yvonne Miller have been our friends for many years and continue to be there with encouragement and counsel. Pam Whitted is Nan's special friend and we talk several times a day and night, she is a true friend to both of us. Aunt Ann is a dear Aunt of Nan's who is a prayer warrior that we call on often. Our loyal Appraisal family not only works hard but prays hard as well for us every day. Yes we are blessed in so many ways and by so many people and I'm not sure we had ever really thought about that before, not like we do now.

So as the day ends, 10:40 pm, we are once again driven to seek your prayers and intersessions on Nan's behalf. Please Lord, will you help Nan's body heal the bleeding areas, will you help her heart to find a peaceful steady rythmn, will you prompt her kidneys to once again remove the toxins, will you help her to continue to recover? Lord we ask you to do your will in her tonight and tomorrow. Lord we need your divine help on her behalf. Thank you for hearing our prayers. We love you.

Good night friends and family,

tim and nan

Sabbath afternoon - hanging in there!

Hello friends,
It is about 3 pm here and a lot has happened since this morning. Some good, some not so good.
Nan handled sitting in the chair very well and stood twice in the process. It was as tough to do as anything I have ever seen anyone do since she is so weak and frail.
Nan has been visited by teams of doctors from Plastic Surgery who assessed her incision and were pretty OK with the progress, made suggestions and left. Then the Cardiology doctors came. They took a hard look at the evidence from the last couple days showing what her heart has been doing and decided that at this point her heart is OK. They suggested that her red cell numbers be supported higher, there is a name for it but I can't spell it, like hermatocrit. They have been allowing a level of 25 or 26 but now are going to support 30 or more. They are also going to try to get her heart to work a little more effectively by evening. Then we had two visits from the GI team. They had scoped her on friday and located a blot clot at the point where the small and large intestine are attached to each other. They are not sure whether that is a point of bleeding or what. They want to avoid another surgery at all costs. As you can imagine they want desperately to avoid going back into the OR so they are going to wait and watch for a couple days to see if the bleeding slows on its own AND THAT IS OUR PRAYER DIRECTION TODAY. While there are other serious issues facing Nan the blood loss through the colostomy represents the most immediate threat since it is an unknown with no sure answer how to repair it or even what needs to be repaired.

Right now Nan is awake and watching her blood flow in and out through the clear tubes to the dialysis machine. She is moving her head around and appears to have more energy, probably a direct result of the new blood she just received. I have been able to show her some of the email comments and cards you have sent to us. She is touched by each one. She does not have enough strength yet to operate the computer on her own or the cell phone but that will come in a couple days.

Our situation is this according to me, a non medical observer. General healing is taking place all over her body, she has removed all the extra fluid that her body was filled with herself, in fact she is a couple units of fluid lower than normal right now. Her various wounds and puncture points are healing up rapidly. She is mentally sharp and is yawning, smiling, moving about well and when awake can carry on a good conversation but in a very soft voice. Her skin looks normal color now and Nan looks like Nan again. Her heart is pumping excellent blood pressure, her lungs are dry and working well, her throat is healing, at this point she is not on any oxygen at all, her legs are warm and have good pulses all over. She looks much better than she did a week ago. So we have many more plusses than minuses right now. However some of the obstacles are very serious, the most serious being the lost of blood through her colostomy. Secondly are her kidneys and their ability to process toxins, creatin and bun levels etc. But that can be dealt with by a visit to dialysis when needed as the kidneys do better and better on their own.

So the view from Nan's room is hopeful yet with concerns. It is not my intention to color reality either way. I am simply sharing what I know, what I feel and what I hope. I have never felt less adequate in my life since there is so little I am able to do to help Nan in a medical way. I am here for moral support, to move blankets, to make sure nurses know things I have observed, to be an encouraging coach to her, to relay what doctors tell me in simple language to her, to be visible in her eyes when she wakes and when she falls asleep and to pray without ceasing for her. I have more confidence in God at this point than at any other point in my life. I feel comfortable sharing my desires and hopes for Nan, for our future together, for His divine intervention, for His grand will to be done.

Each of you reading this blog can have a part in Nan's life too. This afternoon I am appealing for your prayers for the bleeding from the GI tract. Please let God know how much we need His help with stopping the bleeding. He has stopped her bleeding before on the night after surgery and He can certainly do it again. Please remember that there are many others facing very serious health issues even among those reading this blog.

Thank you for being a prayer warrior for Nan. She is worth your time, your energy, your prayer time.

with love,

tim

Sabbath (Saturday) Morning

Hello again,
Nan had a decent night with fewer heart irregularities as the beta blockers kicked in. These meds lowered her heart rate allowing the heart to rest more between beats. Her blood pressure held fine. I left finally at 12:15 with the sounds of the warning beepers still in my ears. I got back here this morning at 7:30 and found Nan awake for awhile. Amy helped her stand on very weak legs and then sit in a chair for 30 minutes. She also stood up as they were helping her back to bed. She was begging to be able to go back to bed by the end of the 30 minutes. Now she is sleeping well. Well until the doctors came for rounds which is taking place right now. She wakes up a bit to listen to their dire comments and discussions about what to do for her today.

It seems that the current issues facing Nan are irregular heart beats, bleed in the GI tract with a large blood clot just inside the colostomy, kidneys are not yet doing everything they need to do to control toxins, incision not healing as cleanly or quickly as is desirable, throat is still to sore to allow proper swallowing. She is slowly regaining her strength but at this point is extremely weak.

Some of the things being planned for her today include: a second sit up in the chair, a heart specialist consult, backing off on the beta blockers a bit to get ready for the 4 hour dialysis to come. So like every other day this will be a busy day for Nan and one filled with stress for little old me as I watch helplessly as these things take place. Many times I simply bow my head whereever I am and ask God to hold her closely in His healing arms.

It is my hope that you are having an enjoyable weekend and we long to be with each one of you, just hanging out, sipping a cool drink and enjoying normal life. As foolish as it sounds it is hard for me to imagine a normal day ever again from the perspective I have right now. I am so grateful for the miraclous progress Nan has made, she has come a very long ways in these last 2+ weeks but my friend she has a very long way to go.

Many of you have helped us with donations and I want you to know how much I personally appreciate each of them. It is not certain when I will be allowed by the doctors here to make a short business trip to California to inspect properties. So far they say absolutely no, the risks remain far to high and it would be unthinkable to me to be that far away at this point in Nan's recovery. When you help it means I can stay a little longer by her side.

I will give updates later in the day which since we are Seventh-day Adventists is our Sabbath, a day for remembering God's redemptive love. I know of no place better than right here beside Nan to celebrate and worship our loving Heavenly Father.

Will you join me in praying specifically for Nan's immediate health issues. We both thank you very much.

love

tim and nan
ps Plastic surgery was just here to look over the wound. They think it is making progress, want the dead skin to be cut away each day and will soon use something called a vaccum sponge to help speed up the healing process. Now someone is here from GI department to make decisions about the bleeding in the colostomy. She got a unit of blood last night and will get another one soon today. Dialysis is to take place in about an hour. Soon I will go find food, I can feel I need it.

Friday, June 23, 2006

Prayer alert

Good evening
Its 11:10 here in Boston and once again Nan is having heart issues. She is having heart irregularities once again tonight but I am told they are different than prior ones. Her heart continues to have good blood pressure but the beats are all crazy. Right now the nurse is introducing a bit of nitroglyserine into an IV drip in hopes of helping the heart do a better job. He has already put in a beta blocker or something like that to try to get the heart to be more responsive. I am told that this is not serious but it sure gets my attention when beepers go off all around and warning lights flash. This happened at this time last night too. Last night it settled down and then I went to bed but was back here at 6 this morning so its been a long day indeed. But a longer one for my sweetie. Got my kiss again tonight and she wanted to go through her purse, was looking for some tynnol, of course she can't take any but she wanted to. She has pain in her left leg which I think comes from the sling they use to lift her. She was able to tell me this evening and I passed the word along to her male nurse, really great guy with tons of education beyond nursing.

Nan has no chest pain and feels nothing when the heart misbehaves which I guess is a very good sign. Anyway what he has done has calmed things down a lot and the heart is doing much better. Now I just heard the on duty doc tell him to gently remove the nitro and use more beta to slow the heart more, interesting indeed.

I'm going to sign off now, dead tired, 11:45 pm, I'll have to walk out and leave her once again in God's hands to care for till morning. This is hard stuff let me tell you, here is this precious lady who is normally in charge with plans going on constantly in her head, now reduced to being forced to lay in this bed week after week with no where to go, nothing to do and lots of fears and concerns swirling around her constantly. How she keeps her sanity is beyond me. She whispered to me that if we could find a wheel chair we could go to my room, I think she was serious. I had to tell her we needed a little more time yet to get her on her feet. She was not impressed. She did get to talk to her brother David on the phone this evening and I think they both enjoyed that time together.

Well I've got to sign off, please remember dear Nan in your prayers, calm her beating heart.

love

tim

Finally friday

Dear Friends and fellow earth travelers,

We are nearing the end of a very eventful week. A week ago Nikki and Keanna were still here, Jason had just left and Nan was not very awake, was on a respirator, had a poorly functioning liver and many other health issues. As I observe her now she had a liver that is nearly normal in its ability to function, her skin has lost its yellow tan, the extra fluid she was holding has gone, her mental alertness is great, her kidneys continue to put out at about a rate of 60 or more CCs per hour, her heart has settled down and her lungs are great. She is coughing up the bad stuff very well and does her own suctioning now with a wand.

She has been visited by many doctors today. Some have been here to consider her incision which remains partly open and not healing as well as they would like. A couple actually did some work on it cutting away bad tissue and skin, that required some pain meds so for the rest of the day Nan has been sleepy. And of course the Dr. who evaluates her ability to swallow came after the pain meds had been given, as a result she was taken off the ice chips until monday when they can evaluate again and she cannot have anything by mouth until then. She was so crushed as she knows ice chips are a bit step forward to recovery and she had had them for the last 12 hours along with a bite of jello and was considering warm water or hot tea. So now for the next 2 days nothing again goes in. She was so upset that at first she told me she was not going to move, I think this means when they ask her to move. However she seems to have calmed down now and is resting again. She watched a bit of TV but of course two more doctors came by to check in on her and tell her they would be back after being away over the weekend. They are all sweet and very helpful, just today there has been a constant stream of them poking and prodding, cutting and scraping.

The weather outside matches the mood in the room, heavy rain, thunder and lightening, dark gloomy views everywhere. Yes we are thankful for this weeks progress, she loves having the respirator gone, she loves being able to stand up for a few seconds and even likes the chair but it is so hard on her to do it. They have a wonderful sling attached to a lifting device that mounted in the ceiling and can move a person anywhere in the room. It helps a lot with the lifting.

Our nurses this week have been outstanding, caring, attentive, advocates for Nan's health and treatment. They are a special breed, work 12 hour shifts 3 days a week and are amazing in their knowledge and compassion. We will miss ICU when we leave here to go to the main floor sometime next week. We are going to try for a private room even though we have to pay $70 per day from our own pocket. Nan has a very hard time with perfumes, food odors and sickness sounds from roomates. With the private room comes a cot where someone can stay the night with her. That is such a good idea especially at first when Nan leaves here but still is so sick.

As I understand what I overhear from the doctors and nurses Nan's big challenges right now are getting her heart to be more stable and progress is being made on that front, having her throat heal to the point where she can swallow and begin to take liquid and food, getting her kidneys to remove all the toxins, not just some of them, having the incision wound begin to heal more rapidly and general strengthening of her whole body. Please join me in praying that God will finish the wonderful miraclous work He has begun in Nan and restore her to complete health according to His grand plan. We have seen Him open and close doors for years in her behalf, we didn't always like His plan or understand it at all but looking back I can sure see His leading.

I often wonder how it happened that Nan would be hit by GIST. She have lived an honest life of hard work, honest dealings with everyone, been an incredible mother and a faithful loyal wife to me. She has traveled thousands of miles to visit with GIST patients, has helped hundreds of people with travel arrangements, has been a spark plug for so many birthdays, Christmas events, sang in many choirs, traveled all over the world and played her life straight. Yet she has this terrible disease for which there is no cure yet. She has fought bravely for 10 years and is now fighting her way back once again.

My prayer is that God will hold her especially close this weekend and move the process of her recovery forward in a miraclous manner. Can you please pray that Nan will feel God's healing power in her body and in her heart. Pray that God will calm her soul and give her peace.

Of special concern this evening is Carroll, our fellow cancer warrior, who is lives in Lodi. She had a tough night last night and needs our prayers. Please keep remembering Rick, Sharons brother who has an appointment with MD Anderson next wednesday.

Thank you for your faithfullness in prayer for Nan. Many here often say Nan has an angel watching over her. We agree and just ask that they draw even closer and touch her various needs in a special way as the weekend comes on.

With love and effection,

Tim and Nan

ps Thanks Roger and Carol for driving all the way from N. carolina to visit Nan. We really appreciate your coming so far. Thanks for also letting us know you arrived home safely this evening. Also special thanks to Roxanna for driving up today and spending time with Nan and me.

if you get a chance please drop Nan and cheer up note this weekend using this blog and I'll read them all to her one at a time. Helps pass the hours.

Friday morning day 15

Hello from sunny Boston,

After a short night I woke and called Nans nurse at 5:30. I was told she had a good night and with some beta blockers her heart rate was more controlled and she had fewer irregular beats. All numbers are improving or good. Creatins 2.1 which is up only slightly from last evening. No infection, lungs clear, good cough reflex, liver nearly normal. No more bleeding through colostomy. The nurse said that when Nan heard I was on the phone she said, tell him to come now. So I showered, dressed and was in her room by 6 am. She was awake, at peace and was munching ice chips. For Nan to get ice chips is a big deal but yesterday we were told ice chips were a ways off yet, well the night nurse decided differently and so far Nan is doing well with her few ice chips per hour. At this moment they are having her sit up and even stand for a minute and when I go back in she will be in a chair for awhile. This helps her lungs and even though it is hard work makes her stronger in the long run. Then they will let her rest for awhile and then the dialysis machine will come for 4 hours today. Then she will need to rest up again.

Highlights of the day are: new email from Jason and Jo who are on a mission trip to South Africa. Jason says mixing cement by hand is hard work and Jo is painting her heart on in the hospital. They said the stories of the people are tragic and the people are so nice. They are doing well and wished mom improving health every day. The other high light are new pictures of Keanna. Mom just beamed as I showed her each picture on the laptop. thank you Nikki for the photos, mom loves them. I think I may go get a color cartridge for the printer so we can print a couple of them out for her room.

Nan continues to improve every day in spite of my sometimes panic filled posts. It will be interesting to see how her stomach tolerates the ice chips and if it does well they promise more liquids to come.

As you might expect since I went to bed at around 11:30 and was back here in the room at 6 I am a bit sleepy so some orange juice may be in the near future. Thats as close as I get to a stimulant right now.

Nan and I both appreciate your prayers and love.
with love

tim and nan

Thursday, June 22, 2006

Thursday evening - at peace

Dear Friends

I am in the hotel lobby on my way to bed. I have just had the most wonderful few moments with Nan. She woke just before I left and leaned forward and kissed me good night. Same soft wonderful lips. She has had some day with ups, downs and finally rest. This evening her heart was acting up but I don't think she was aware of it and it had no effect on her blood pressure but it sure got my attention, listening to the beeper sound when the beat was off a bit. They say it could be due to the dialysis, sometimes it confuses the heart a bit.

Creatin level is 1.7 tonight and BUN is now 48. 2 days ago creatins were 4.7 and BUN was 150 so the dialysis is helping big time. She has been alert and talkative all day and in spite of the nasty round of scoping her insides she is doing well. Red cells are holding now and no more blood in the colostomy so for now good news.

Good night and thanks for your prayers,

with graditute

tim

Nan still needs your prayers

Dear fellow travelers,

It is 5:50 and for the last hour specialists have been working over Nan with a scope to try to locate the source of blood in her colostomy. It has become more of an issue over the last few days and today is being addressed with a special team. As I write I have no idea what they are finding as they search through her GI tract and stomach. She has had a great day, awake, tube gone and talking up a storm, feeling better ready to take it to the next level and then this new issue arises.

It is now 6:20 and I'm beside Nan. The team found a large blood clot just inside her body where the colostomy attaches to the intestine. I may not have the terms right but when they made the discovery they decided not to remove the clot until they could consult with the surgery team to decide how to proceed. Nan is tired out from having a new tube with the scope down her throat but she tolerated it fine and now has a mask with humidifer helping with the sore throat from all the tube activity. She is such a brave lady and is very busy coughing up stuff from her lungs. So we hope for some more wake up time later this evening and probably a decision to fix the large blood clot tomorrow. She is set to receive dialysis again tomorrow for 4 hours so we will see how it all plays out.

We have had a very good day with many conversations, smiles and understanding how far she has come and how God has watched over her. Nan is an amazing woman and has no intention of giving an inch in her recovery process. When Amy asked her if she wanted to get in the chair she jumped at it in spite of being tired already from dialysis, but then the scope team arrived and the chair sitting was put aside while they had me sign forms of consent and jumped in. Thank goodness Amy was here to be an advocate for Nan. These nurses are just great.

Now it is 6:40 and a Dr. who is on Dr. Bertognolli's surgery team was just here. She is on top the bleeding colostomy issues and a decision will be made if the bleeding continues but for now it appears that they are hoping the body will heal itself and the blot clot dissolve. They are trying to avoid a new surgery if possible.

So once again we have been on a rollor coaster, up, suspended and then down to now level off again. Thanks to the prayer warriors who were praying while the procedure was going on.

Roger and Carol are on their way home and had passed New York when I last spoke to them. My how we appreciate them coming to see us. What an absolute blessing to both of us and a lift.
In times like these one begins to slow down, let the junk pass by and focus on the very important issues, family, friends, relationships and faith. We are so thankful to be able to relax and reflect on even more troubling times a few days ago and praise God that Nan is much stronger than she was. This after noons events remind us that while we are moving down the path we are not yet out of the trees, that there are challenges right in front of us to be dealt with. At some point Nan will need to begin to eat and process food through her body, some day her kidneys will need to kick in and do all the work of removing toxins, she will have to gain strength enough to stand up and begin walking, yet in comparison with where we have come from we are well on our way.

It is now 7:12, Dr. Bertognolli just whisked in and was like a breath of fresh air, she is so positive and encouraging and was not at all side tracked by the clot found earlier. She thinks it will dissolve on its own so for now no immediate action is to be taken. She told us that she is leaving for 2 weeks tomorrow so we will not see her again for awhile but she promised to call in every day to check on Nan. Her team is in place and visits every day faithfully and consults with the ICU team on everything.

Now Kristen, her new nurse, is checking her out completely, ask her the month and what hospital she is at. Nan knew the answers. We received two cards today, both cute as can be and Nan loves them. We are starting to take over this place. I have my laptop, printer, ballons from Drew and Heather, photos from Nikki and a spare apple just in case.

Well its 7:30 and I'm signing off now. Nan is resting and watching TV with one eye. Finally this day is winding down.

Thank you for your continual prayers for Nan and lets remember Rick and others who are facing immediate health issues as well.

love from tim and nan and this time she really knows

Modern Day Miracles

Goodmorning to all of you. This is Roger Peden writing this morning. Carol and I have been here for the past two days. When we arrived we expected to see conditions which were less advanced in progress. We knew that Tim was very optomistic in his reports and that perhaps his hope and expectations were exceeding reality. Carol and I were amazed that Nan is doing so well. GOD HAS PERFORMED A MIRACLE!!! We do not know all the final outcome, but only take each day. None of us are assured of life and health each day, and Nan is no exception. However, we have seen a living miracle in the progress of Nan's recovery.

Today has been a milestone in her recovery. She has had the respirator/ventalator tube removed this morning. It was a installed after surgery to assist her breathing. It was a real help in her breathing, but eventually it becomes an irritation to the throat and mouth. She is now enjoying being able to speak again. It was impossible for her to talk with the ventalator tube in her throat. She is in good spirits and resting comfortably. Her awareness and mental comprehension is doing well, even to the extent of worrying about airline tickets. The medication is being reduced which allows her to have more mental clarity.

She has already been sitting in a regular chair for a half an hour this morning. Yesterday, she received some dialysis and is scheduled for some more today. The blood conditions are not quite stable, but do continue to improve. It is amazing that the human body can accept and deal with the infusion of approximately 150 units of blood. What a marvelous creation God has made in the adaptability of the human body. As wonderful as all the doctors and nurses have been, it is still only the healing power of God that restores life and health.

It has been a real inspiration to be here and see a miracle at work. Nan has a long way to go in her recovery, but she has come a remarkable distance already. God is answering prayers. Thank you Lord. Modern day miracles are happening.

GOD IS GOOD!!!!

Dear Freinds,

I asked Roger to write things as he sees them and I think he expressed our situation very well. Nan has been able to talk to us this morning in a very soft voice due to her throat irritation. She has been having some heart irregularities today which are new to the scene. Amy thinks it might be caused by the IJ tube which has been installed through her neck into the artery for dialysis, sometimes it can tickle the heart into irregularities or she may be having heart issues. We are also facing a situation where the GI is not handling the food they tried to introduce into her stomach and today there is some old looking blood in her colostomy so they have started her on Nexium which should calm and sooth her system. The liver numbers look overall good and right now she is learning to breath deeply enough to keep the ventilator out. It has been wonderful to be able to communicate with her and let her know she had several trips to the OR and that she is doing well and is tumor free right now. She reminded Roger to use spell check when he was writing his comments, she has asked me about airline tickets so she is sharp as a tack now. Yet she is falling asleep now, more than she should.

We will blog more later but so want to thank you for your prayers and nice emails. We look forward to getting to talk with each of you in the future, to thank you personally for your help during this unbelieveable time.

Lets remember to pray for Rick and for others that are facing immediate challenges, surgeries and health challenges.

So today we reaffirm that God has been very good to us, that His loving hands and presence are being felt here in Boston, room 59. When Nan realized that Roger was in the room she asked him to have a prayer, that was a touching moment, one of many that we will never forget. So many thanks to Roger and Carol for their trip here and for their wonderful friendship.

So until later, thanks for the prayers,

love

tim and nan

Wednesday, June 21, 2006

Sleepy in Boston

Dear Friends, Family, Fellow GISTers,

Roger and Carol have been with us all day and when I asked them to comment on what we should name this email message they said sleepy. When we first arrived this morning we found Nan awake and ready for the day but the next move was to put in the j tube so she could have dialysis. As a part of that procedure they gave her a tiny bit of pain meds and since then she has been pretty much asleep all day. She wakes briefly to talk to the doctors and Loren her nurse and sometimes to Carol who holds her hand a lot. But mostly she still sleeps. It has been decided that they will not remove the respirator this evening but will do so in the morning so we will be here to witness that. Nan is excited about getting rid of it but only for about a minute and then falls asleep again. I know she wants to wake up but she is groggy right now. The thought is that the dialysis will begin to wake her up and by morning she will be awake enough to handle removing the tube and let her breath on her own.

Roger and Carol were kind enough to venture out into Boston traffic and find a grocery store where they got some basics for the room. that is much appreciated let me tell you. The Trader Joes was about a mile away and I'm not really into walking with a sack of groceries that far. They have been such a lift to me and so very good to Nan while they are here. It is a great thing to have a friend and to be one too.

I have been in touch with my office several times today and they are all doing such a great job with things I am just humbled by their commitment and hard work. While we are enjoying cool 85 degree weather it is over 100 degrees at our home in California. For the first time I like Boston weather better than home.

Since I started this message this evening things have gotten considerably better. Her wonderful nurse agreed to stay extra time this evening to put her in the chair and then to bed. The care level here is just amazing. When we walked in after she was in the chair she was totally awake and watching the Red Sox play. She talked to us as well as she can with a tube in her mouth and lungs, let us know she wanted to let her legs dangle for awhile, let us know she wanted the TV control so she could change the channels, let us know she wanted the tube out of her mouth, let us know a whole lot of things. Now they are putting her to bed and hope she sleeps well tonight so she will be up and awake in the morning for the respirator to be removed. She certainly hopes so and so does the surgeon, Dr. Bertognolli.

Tomorrow Roger and Carol have to leave for North Carolina. Their coming has been so special to both of us and has lifted our spirts. On friday Roxanna is coming back and Nan always enjoys seeing Rox.

Nan is going to get at least one unit of blood tonight since things are just a little low. Tomorrow hopefully she'll get the tube out, get dialysis again and be even strong on her road to recovery. The next step will be getting her up to sit on the edge of the bed and then to put some weight on her feet with the eventual goal of walking. To see her tonight with the yellow tinge of her skin gone, extra fluid gone, eyes clearing up, all leg and arm movements much stronger and more controlled, very clear mental processes and memory working well, some smiling and some very nasty facial expressions when she is not pleased with something, its Nan all over coming out.

Your prayers have been noted by us but more importantly by our loving Heavenly Father. God knows that there are people to love, missions to go on, Keanna to spoil and shopping trips that need to be taken. God is helping Nan onto her feet and its a joy to see and experience first hand. This is a miracle lady and I just happen to be the one who gets to live with her and love her with all my heart. I have never experienced such a variety of emotions in all my life, from terror to elation, from despair to hope, from lost to found.

You are our friends for life and like it or not you are stuck with us loving you as well.

Thank you for being prayer warriors for Nan. Please blend your prayers with gratitude and a request for her kidneys and her overall recovery. Please pray also for Rick, Sharons brother who is facing some serious health challenges of his own. His next doctors appointment is wednesday at MD Anderson.

I am now back in Nan's room to say good night to her. She is already sleeping.

Good night my friend,

love
tim

Wednesday am report

Dear Friends,

Nan is doing pretty well today. On schedule for today: Nan is set to get dialysis in a short while. Then later in the day they will attempt to remove the ventilator if she wakes up a lot after the dialysis. So we have our high hopes for this next 12 hours. Nan has been very sleepy this morning, almost not awake at all so far. They are actually letting her sleep right now because she is going to be going through the dialysis pretty soon. Also when they had to install a j line for the dialysis hookup it was uncomfortable and they gave her a tiny bit of pain meds so we are seeing the result of that tiny bit of meds as well. Her breathing rate is good at 22 to 29 per minute and her volume is pretty good as well. Her blood pressure is lower than it has been but again probably is effected by the tiny amount of pain meds.

Roger, Carol and I camped out just fine last night in the room, had breakfast in the hotel and then came here. We have had very little eye contact today, mostly just waiting and waiting for the next good thing to happen.

If today goes well and Nan begins to wake, gets the ventilator out her chances of getting out of the ICU in the next couple days are very good. It all hangs on waking up fully. Kidney numbers remain high but will be effected rapidly by dialysis. I've heard no other discussions regarding reasons for being sleepy than the high kidney caused levels of BUN and creatins. So I would ask that you direct your prayers along the lines of successful dialysis, Nan waking up, kidneys working better and removal of the ventilator. I know that praying involves time and we appreciate your taking the minutes you do to pray for her. Let me tell you, she is worth it.

Today as I sit at the foot of her bed, Carol is sitting at the side and has held Nan's hand most of the day. Nan likes to have her hand held when we come in. The ventilator machine is to the left of her bed and is reading 22 breathes per minute with a volume of just under 400, her heart rate on the monitor on the other side of the bed is about 111 and her blood pressure mean is about 65 to 70. She has almost no lines to her body now, still is receiving TPN on a continuous basis 24 /7, that is her food supply. It is a pleasant day of about 75 degrees here with little breezes. Nan's room is on the 7th floor and she has a great view out the large window, thats when she wakes up to enjoy it.

So we are holding on to hope for the day. Roger is out taking a walk and exploring. He is doer and is not used to sitting or standing for hours with absolutely nothing going on. How I appreciate he and Carol being here and I know Nan will appreciate it too when she wakes up.

We send our love and ask that you please pray for Nan today. She has once again reached an important point and we need to be able to move forward.

With love,

Tim and Carole and Roger

Tuesday, June 20, 2006

Evening peace

Dear Friends,

As I am sitting here in Nan's room this evening I am once again very grateful to our Heavenly Father. Nan is now resting quietly after a very big day. As I have mentioned before Nan sat in a reclining chair twice today which has tired her out. A plan is afoot now to do dialysis sometime tomorrow and also to remove the ventilator. We will see what tomorrow brings. We have the wonderful pleasure of having Roger and Carol Peden here with us this evening. They started driving here yesterday and arrived this afternoon. How good it is to have long time friends to visit with and to interact with Nan. Nan definitely knows they are here. She had a great morning with Roxanna too.

We hope for good things tomorrow and for a turn in the kidney numbers. That is certainly what I am going to be praying for tonight. She is so beautiful as she sleeps and her breathing rate is good tonight and the volume of her air is excellent.

Our nurse tonight is great and Amy was great today. These nurses are so professional and on top of any thing that happens. Now there is talk that if she can get off the respirator she will be moving to a regular room in a couple days. At first the talk was that she might be in this room for a month. I like the shorter duration if its good for her.

A couple people have suggested that I mention the addresses that donations can be sent to again since it was several blogs back that I listed them. I want to express my appreciation for the help that has been given our family. Simply put it allows me to remain here at her side when she and I would normally be working in California. Here are the addresses:

Tracy SDA Church 2025 Holly Drive Tracy, CA 95376 or Bob Miller, Church Treasurer 161 Ramona Way Tracy, CA 95376 Denver First SDA Church 6200 W. Hampden Ave Denver, CO 80227 Please make contributions out to SDA Church and on a separate paper put: for Nan's Recovery Fund or Family in Crisis Fund. No money is taken out of the contributions. All $$ are sent to Discovery Bay for Nan's Recovery Fund. --

So far we are doing OK on all fronts. Nan is making remarkable progress and its been two weeks today since her surgery. Thank you for caring enough to pray and to drop emails to us. Your prayers have touched Nan, they have touched the caregivers here and they have touched our family.

So until morning

love

Tim and family

Evening peace

Dear Friends,

As I am sitting here in Nan's room this evening I am once again very grateful to our Heavenly Father. Nan is now resting quietly after a very big day. As I have mentioned before Nan sat in a reclining chair twice today which has tired her out. A plan is afoot now to do dialysis sometime tomorrow and also to remove the ventilator. We will see what tomorrow brings. We have the wonderful pleasure of having Roger and Carol Peden here with us this evening. They started driving here yesterday and arrived this afternoon. How good it is to have long time friends to visit with and to interact with Nan. Nan definitely knows they are here. She had a great morning with Roxanna too.

We hope for good things tomorrow and for a turn in the kidney numbers. That is certainly what I am going to be praying for tonight. She is so beautiful as she sleeps and her breathing rate is good tonight and the volume of her air is excellent.

Our nurse tonight is great and Amy was great today. These nurses are so professional and on top of any thing that happens. Now there is talk that if she can get off the respirator she will be moving to a regular room in a couple days. At first the talk was that she might be in this room for a month. I like the shorter duration if its good for her.

A couple people have suggested that I mention the addresses that donations can be sent to again since it was several blogs back that I listed them. I want to express my appreciation for the help that has been given our family. Simply put it allows me to remain here at her side when she and I would normally be working in California. Here are the addresses:

Tracy SDA Church 2025 Holly Drive Tracy, CA 95376 or Bob Miller, Church Treasurer 161 Ramona Way Tracy, CA 95376 Denver First SDA Church 6200 W. Hampden Ave Denver, CO 80227 Please make contributions out to SDA Church and on a separate paper put: for Nan's Recovery Fund or Family in Crisis Fund. No money is taken out of the contributions. All $$ are sent to Discovery Bay for Nan's Recovery Fund. --

So far we are doing OK on all fronts. Nan is making remarkable progress and its been two weeks today since her surgery. Thank you for caring enough to pray and to drop emails to us. Your prayers have touched Nan, they have touched the caregivers here and they have touched our family.

So until morning

love

Tim and family

Surprise - Nan is in a chair

Dear Friends,

I was surprised to find Nan sitting in a reclining chair this morning. Amy, her main nurse decided it was time that she get a chance to be in the chair so she made it happen. There has been a lot of discussion today about removing the ventilator. Nan has been sitting up in her chair a couple of times for more than an hour each time. However she remains very sleepy and just not alert enough to handle breathing on her own. Her cough reflex may not be strong enough to handle it so the plan now is to wait until tomorrow. When Nan wakes up she lets us know she wants the tube out but she does not stay awake enough to prove to the nurses that she can handle it. Why is she still so sleepy? Creatins and BUN which are both elevated way above normal and causes confusion and sleepiness. The tube needs to come out since it has been 14 days in yet it can't come out until she is more awake and she won't be more awake until the creatins and BUN come down. The nasty circle we are in right now. They will try to remove the ventilator tomorrow if she is more awake.

Roxanna arrived this morning and helped me get the rental car back to the airport, no problems and they lowered the rate to $109 per week from the prior $166 per week. Now I have no wheels to have to park every day or put fuel in. My commute back and forth is 2 blocks and there is every kind of food one could think of except Taco Bell nearby.

Roxanna is massaging her feet and legs right now and Nan seems to like that. Today she is mostly asleep though which is sort of a setback in a way. Our friends Roger and Carol just called and are about an hour out. It will be wonderful to see them again.

Since I first started this blog things have developed. We are even more in a rock and a hard place situation now. Nan is sleeping more and more and its caused by a BUN of 149 now and a creatin of 4.6. These factors keep her very sleepy, to drousy to let them take out the breathing tube. A decision will have to be made shortly about using dialysis again to get the creatins down so she can wake up and get the tube out. Otherwise they may go ahead with the trach.

If there was ever a time to pray for Nan this is it. Once again a time of decision and factors beyond human control. Her kidneys need to kick in soon on their own and start pulling toxins. They are putting out lots of fluid but not pulling the key toxins. We had hoped that a tiny trend down was happening with the drop from 4.6 to 4.5 but this afternoon it is once again 4.6 yet again. Her BUN jumped from 126 to 149 in a 6 hour period and that is a very serious jump. Meanwhile many of her liver numbers are now normal with only one or two being elevated now. That is great news. She is not running a fever, her platelettes are great now, the heart damage that resulted in her heart output at 15 has lessened and now her heart output is 30 which is nothing short of amazing in such a short time. Her lungs have a very heavy mucus that can be hard to suction out and that creates issues with breathing at times.

So to recap Nan has gotten to sit up in a recliner 2 times today for a total of about 2.5 hours. Many factors are better but she remains very sleepy which is caused by the elevated creatin and BUN levels. She has lost most of the extra fluid she was carrying but not all of it. She can be very alert and is aware of those around her. While she is no longer in as critical condition as she was until the kidneys do their thing correctly she remains a very sick woman. She looks good and when she sleeps the number of breaths per minute is good at about 25 and she is getting good air supply as well.

Roger and Carol are approaching so I will blog later.

Please pray for her kidneys. Thanks so much

tim