Nan Mustard's Recovery

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

Thursday, July 20, 2006

Bummer night, bummer day

Dear Friends,
How I wish you could be with us this evening just to have someone to talk to and pray with. Nan had a rough night with constant throwing up and the searing pain that goes with it through her throat and voice box. We starting calling the surgical team at about 6:30 this morning when it became clear that she needed further medical attention. At 8:15 we got confirmation that we could come to the surgery clinic, then we were told to go to ER so we loaded up in the car for an eventful trip, yes I took a wrong turn and cost us 30 minutes as we traveled streets we have never seen and never care to see again. Nan was so wonderfully patient even though hurting and sick, never complained about my lack of direction at all. Finally we happend on the right street and arrived at ER. We went in and after a few minutes of waiting and no signs in sight of when Nan would be seen I called Ellen at Dr. Bertagnolli's office and she got back to me, said Michelle would meet us over at Dana Farber so I loaded Nan back into the car and drove the two blocks to Dana Farber where we went to the adult clinic. Michelle had arranged for Nan to have a blood test and then she would see her in a room there. Well the blood test never happened, they were so backed up with other patients and we finally got a room, Michelle was very persistent. She listened to Nan's tummy and heard good belly sounds, checked out the bags full of blood and urine, listened to her lungs, ask loads of questions, no Nan had no gut pain, Michelle was concerned that the substance Nan was throwing up was the same color as that coming out the colostomy, dark green! Then Michelle went to confer and we were left alone. Nan was on a narrow cot and she went to sleep, I was in her wheel chair and I went to sleep, remember it was a very short night last night of sleep. Finally Michelle came in and said that the CT scan was going to be done at Dana Farber, she thought it would be faster. We headed down to imaging and Nan did so with dread. Remember this is a lady that lost every drink of water she tried to put down all night, now she was going to be asked to drink two full bottles of Ice Tea with special meds in them, I'm told they taste awful. So I watched with admiration as this gutsy lady, sick, weak, freezing cold drank down her first bottle. She had me turn her to the wall so if she lost it others who were doing the same drinking thing would not become sick. Then she faced the next bottle, I watched her play mind games with herself, focus and she did not lose a drop of either bottle, kept it down and about 30 mins later was done with the CT scan and we were on our way via interior walkways and catwalks over to Brigham and Womens to be admitted. Michelle had greased the slids and they were ready for us, yet it took 2 hours for them to locate a private bed for Nan. The first hour was in the wheelchair and an upright chair and believe this, I have done a whole lot of back rubbing today. The second hour two recliners became available and we both laid out and the nice lady brought a warmed blanket for Nan and within seconds she was asleep, I followed shortly thereafter. At around 6 pm we got to room 15 on 15A floor. Private room due to her prior infection and with a recliner, unfortunately it won't recline but I think after I get to it in the sunlight tomorrow it will recline.
We waited for about an hour before Drs came, the ones that came were some of our favorites. Michelle was there again, she has been an angel all day.
The CT showed partial bowel blockage and they believe it could have been caused by the extensive use of Imodium, Benefibre etc over the prior few days to slow the liquid flow from the colostomy. So all such meds are now not being used, the IV they started with went in at a rate of 990. I have never seen anything go into Nan at a rate higher than 150 before. Almost immediatelly the blood flow into her nephrostomy bags began to run urine color and less bloody. Blood tests reveal that in spite of excellent overall numbers yesterday morning this evenings numbers showed mag and potassium both low and her hematocrit had dropped to 25.6 so a unit of blood may be in order as well.
All of this goes to show how delicate Nan is right now. One day of constant throwing up and not being able to keep any fluid or food down and she goes into crisis. This evening her heart was acting up again due to drop in Mag and Potassium. Beats were irregular but as soon as fluids started going in things smoothed out. They have her on a heart monitor for the night anyway and I'm glad they do.
We are both pretty low. Certainly not giving up but 2 days ago Nan was doing so well, felt great, was walking up a storm, climbing stairs and astounding nurses and PT alike, now she is so sick again. During the night I watched her as she reluctantly began to accept that she would have to return to the hospital, it was tough for her, very tough. She has not been home in over 3 and 1/2 months and is missing being normal a whole lot. She is totally grateful for what has been done for her with the surgery but still has emotions and feelings. This evening she appeared like a person hit by a truck, just all the hope and wind knocked out of her. We prayed together before I left and she thanked me.
So what I need most is sleep. Got to share one thing. God keeps blessing in His own sweet ways. We were needing some help with meeting some financial deadlines and a very helpful check arrived just in time once again. Many, many thanks to those of you who have been able to help us during this very unexpected time in our lives. Our entire family thanks each and every one of you for your cards, your email responses, your financial donations and your words of comfort and courage.
Let me just say, this is not easy! I'm not a patient person and being away from what I love, that is making the business work, well it is very hard because a lot of people depend on me. Fortunately I have great people who have stepped up to the plate and really amazed me with their maturity and professionalism. I am grateful to them and to God who blesses them in what they are doing.
Yet I know that I am needed here. I give Nan a level of care that only a private nurse could give, I empty any bags that happen to get full, I rub her feet, her legs, her back, her neck. I make sure her bedside table has spray, hand sanitizer, puffs (thanks Sharon), water, glasses (thank you Roxanna and Sharon), white gloves, cell phone and a pink bucket to throw up in. She needs to be able to reach all these things without moving too much. I make sure her blankets are not tucked in at her feet, she hates that, that her call button and TV control is nearby, that her bed has the right angle to it, that the room is the right temp., that the blinds are closed to keep out early morning light, that her things are safely tucked away. I make sure she gets hugs and kisses, pats and rubs and lots of affirming words. She has given me her best for 36 years and let me tell you Nan knows how to give!!! Its time that I give her my best as well.
As I write Nikki is flying home from her classes in Tenn. So my prayers have been for her to have a safe flight and drive home after she lands. She works with the nicest people, they have sent such thoughtful comments and suggestions on the blog and I love them all.
Tomorrow Marilyn comes to visit. We love to have her and her visit means I have someplace to send my laundry, yea!! Poor Nan has almost no clothes to wear. Everything she has back here is at Roxanna's house in Conn. She has one outfit and the new dresses from Sharon that so far we have not had a chance to try on yet.
Well I am getting very sleepy. PLEASE PRAY THAT NAN WILL HAVE GOOD REST TONIGHT AND THAT SHE CAN FEEL BETTER. We both long to return to our home in CA as soon as it is safe to do so.
Thanks, thanks, thanks for everything!


tim and nan


  • At 10:17 PM, Anonymous Anonymous said…

    Dear Nan and Tim,

    I am sorry to heear that you have had this reversal of fortune. I hope that it will be of short duration and soon forgotten.
    Always in my vision I hear you telling of these difficulties in a far off place when you are returned home to us. It will be soon I pray. This is of course another day the Lord has made and I will rejoice and be glad in it. Gladder still when you return to us. Reports of your courage and strength has helped all of your friends here and I am honored to be one of then.

    May God give you the peace he promised and the strength you need to face the new day!

    Your friend,
    Wes Huffman

  • At 4:08 AM, Anonymous Carol and Roger said…

    Dear Tim and Nan,
    My heart goes out to you this a.m. as I read of yesterday's happenings. I am so sorry! It had to be a very disappoing and tense day for your both. Oh how I wish we were nearer and could be there for you. You know God is near yet sometimes we need someone near "with skin on". May His ministering angels be with you and keep you at peace today. I'm glad Marilyn will be there. It sounds like she has been one of your "ministering angels" throughout your Boston stay. Yesterday I prayed many times for both of you. I picked up the phone to call several times, but was afraid you would be in the middle of something and it would not be convenient. So I checked the blog looking for any news. Thank you so much for doing the blog. It helps us all feel closer to you.

    By the way, what address do you want me to use to send Nan's CD?

    Tim you have been doing so many things that you probably thought you could never do. God gives strength for the day. Trust that you are not alone. May God wrap His loving arms around you and give you peace and strength as you minister to your dear Nan.

    We ALL love you ~ Carol and Roger

  • At 8:40 AM, Anonymous Anonymous said…

    Nan my heart bleeds for you. Finnaly your hard work was paying off and you were on the road home. I can not imagine the dissapoinment you feel as I have never been forced to be away and in a hospitol for Soooooooooo long. I will pray for you. Pray that God gives you some reprive for atleast a short visit back home, and ideally that you get to go home all together. I am so sorry for the disappointment you are being forced to face once again. If anyone has the strength to see there way through it would be you. Please try and stay positive. I know it must be hard for you. Everything happens for a reason. Perhaps they will find something to do that will take away the back steps of recovery. My best wishes to you. Love to you always,
    Pam :)

  • At 9:43 AM, Anonymous Anonymous said…

    Dear Nan and Tim,
    I lift you both in prayer most every day and often throughout the day.

    I pray that God will let you feel HIS presence as He wraps His arms of love around you, giving you strength, peace and confidence for the days of healing that are ahead...

    Blessings and love,

    Phyllis - North Carolina

  • At 10:12 AM, Anonymous Anonymous said…

    Dear Tim and Nan,
    Thank you for keeping the blogspot up to date.You are both always in my prayers. Your strong love for each other is astonishing and uplifting. Please know we are sending our love to help bolster your reserves so that you will get through this. It will be just another story to tell when you return home.
    Love, Deanne in CA


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