Mourning

Surrounded by people who love me and feeling alone because David is not one of them.  Everywhere I look I see and feel his absence.  I kind of wish his body was still here but even when I held his body he wasn't there anymore.  I put on his Ohio State ring because long ago he wore it.  I hug his clean laundry to my breast wishing it was filled with him.  I sleep close to the edge of the bed to give him room and don't pull covers away from his side of the bed.  I thought I would migrate there but didn't.  So many people writing on my wall about how wonderful he was and I weep that so many of us will miss him...and appreciate that others recognized how special he was.  Oh my David I wasn't ready for you to leave me.  I had a plan to help you get well again and walk with me in the park.  We did walk in the early spring and I wanted to walk in the actual spring, to wake up at 5 in the summer to walk before it got hot with bad air.  Walking was our bookends.  We began our friendship jogging through the trails in Reston before getting ready to go to work.  You would knock on my door and I would jump into my cut off jeans, a tee shirt and my yellow and blue Nike running shoes and off we'd  go.  I kept going because you were an old man and you kept going because I was an out of shape "girl".   We made it to 5 and 6 miles before breakfast.  We'd sit in that little kitchen on Tanners Cluster Court, drink coffee and talk before you left to practice law and I got my boys ready for school.  We continued with that as friendship deepened and we fell in love.  We did Jazzercise after work and on Saturday mornings.  You started swimming with the Master Swim team.  When I hurt my back most of my participation stopped but you continued and somewhere started a daily walk with Fred and his dogs on the W&OD and Sunday drives out to the mountains for serious hikes.  Last summer we started walking together again on Lee Drive in the Battlefield.  You pushed on and on.  Our goal was 30 minutes and we got up to 1.5 miles in that time.  We never did explore the trail to the old slave quarters. People called out that you were their inspiration as you plowed ahead with your walking stick, big hat and oxygen/pulse meter.  You kept a count of your steps on your iPhone and shoved the phone in the face of a doctor who was treating you like a fragile old man. You did over 10,000 steps for several days before you were hospitalized with low platelets and bleeding.  Oh my David I thought we would have a long walking history at the end of our time not this abrupt bookend.  What am I going to do without you as my sounding board, my support, my dear love.  I may never eat those Godiva milk chocolate bars you kept bringing me this last month.  I found one in my purse Monday and remembered your saying "I found these and couldn't resist getting them for you because you love them."  You gave my life meaning, purpose, structure and so much love, so much love.  I continued to be surprised at the depth of this feeling and how it encompassed ,,,,,,,, just everything.  My love for you will never go away.

Memorial for David

The Memorial Service for David will be held on Friday, March 31, 2017  at 11:00 a.m. at Beth Sholom Temple, 805 Lyons Boulevard, Fredericksburg VA. 22406.  540-373-4834.   There will be a gathering following the service at the social hall.  Friend are also welcome at our home through Sunday.  I miss him more than I can relate.  He was at home.  We spent time together this morning and he was fresh and clean when he went back to bed at about 6:30 a.m. Where he wanted to rest while he got his pump feeding.  I went to wake him before the home health nurse was due at 9:00 and he was gone.  I am devastated.  He is still so much a part of me.  I had a plan for him to recover but it was not to be.  Please pray for his soul and for me.  I cannot stop crying.

David died this morning at home.

David died this morning at home in his bed.  He looked peaceful with a tiny smile when I found him. I will post memorial details once we decide what to do.  I miss him  so much.

Weekend update

Sunday evening.  This is going to be stream of consciousness with lousy spelling and grammar due to my being tired and possible interrupted by needing to see what's happening with David who is in bed.
David is unable to talk due to the horrible congestion in his throat.  It is bloody.  I hope that tomorrow's Nplate injection starts to help with platelet formation/reduction in leaky tissues.  He continues to cough up big chunks of bloody stuff.  He had an X-ray and blood work on Friday.  I am hoping for results tomorrow.  His home health nurse comes at 9:30 a.m.  We have many questions for her.  Today he went to bed twice for naps and fell asleep when his friend Fred visited him.  His energy level is extremely low.  A series of leg raises in bed left him too tired to get up and continue with chair leg raises.  His weight is down to 129.2 today because he disconnects himself to go to the bathroom and sometimes forgets to turn the pump off.  There are stains on the carpeting that I can't get out so far.  I've stepped up the rate of the pump to 140mL/hour and he has no backups into his stomach and out the stoma.  I may try to go to 150mL/hour tomorrow to reduce the time that he has to spend hooked up to a pump.  He finally got six full cans of Jevity today and I hope that the weight loss stopped.
He is definitely not depressed and I think that most of the effects of the prednisone are gone.  He is not angry anymore.  I am sad that his body is falling apart.  He is having a big problem hearing.  Tuesday he sees the ENT Doctor and I'm hoping that he cleans David's hears.
Natalie and Fred visited David today.  Fred is unable to talk due to after effects of his stroke and David could not talk due to his congestion.  Still they held each other and hugged; they really formed a tight friendship since Fred moved here.  Natalie and I share a lot too.  Too bad we aren't able to have a usual couples friendship and have sick husbands in common rather than common interests.  Than spend time sitting beside David and hugging him.  I did too.  He has so much phlegm that I am unable to understand what he is trying to say.  He wants to see if we can get a suction device to clear his throat like they had in the hospital. Mucinex is just not working and he keeps bringing up huge chunks of junk.  That's on the agenda for the nurse's visit tomorrow.  I haven't heard from the physical therapist yet and hoped that she could come tomorrow too.
It is now 9:00 p.m. He is in bed for the night.  When I kissed him goodnight he hugged me hard.  I love him so much and wish that I could find a way to help him get better so that we could have another 15 or so years together.  I am so worried that we won't even have another anniversary.  This has been a terrible year for him.  I don't want him to suffer.  He says he is not in any pain and when the nurse or Physical therapist comes he rises to the occasion, tried hard to talk and to demonstrate that he is strong and committed to trying to get well.  When they go, he dozes off.  He has not checked email, read Facebook or played with the new MacBook Air once he verified that he is able to print from it.  He was happy that I got him audible books that he is able to hear using it but after listening for an hour turned it off and is not interested in trying it again.  He barely watched the NC/Kentucdy game that was extremely exciting and went to bed rather than watch 60 Minutes.

TGIF

Thanks for Friday.  I am having a delicious balanced dinner of a martini with olives (my vegetable) and peanut butter (my protein) pretzels (my carbohydrate).  God will understand.
David had a big day and I drove him and interpreting for him all day long.  He saw Dr. Clemo at 9:30, had a blood test later (we waited an hour to be seen), had both a home health nurse and PT visit for evaluation.  He is also scheduled for home speech therapy.  He loved seeing the nurse and physical therapist again.  They made a big deal over him remembering his progress last summer and are very optimistic.  He also had to have a chest X-ray...another hour delay...because of his awful cough and the really yucky junk he coughs up.
Right now David has the feeding pump administering food to his jejunum at 120 mL/hour for a total of 1422 mL each day.  He'll spend a lot of time on the pump.  I hold it when he goes to the bathroom etc.  Tonight his breathing was so labored and his O2 level vacilitated between 86 and 92.  He asked for oxygen and so he is now on O2 again and seems to be breathing much better.  He's agreed to try Nplate to raise his platelet count and will have his first injection Monday afternoon.  He will also see the home health nurse and physical therapist on Monday.  Luckily I will be here too as my students have an online exam and no face to face class.  Katya has been really generous with her time to be available for us and Than sat with David while I did my exam tonight.

I am thankful that he is getting food and not expelling it out of his stomach onto towels and his clothes.  This should give him fuel for energy.  I am thankful that we still have the oxygen concentrator here and he can breathe easier.  I am thankful for Dr. Clemo and her nurse Tracy who are caring, competent medical practitioners who listen to what is happening and make it better for David.  I asked Dr. Clemo to find me a teaching hospital that is full service for active elderly individuals on feeding tubes.  She is going to try but offered little hope.  There is no Facebook group or support groups that I can find to explore options for him (and me).  I think that I have a book here about Caregivers for the Elderly who get written off due to their age and possible short term gains for massive issues.  I also want to report the practice of Dr. Lee for their lack of preparation to help atypical patients.

I am well lubricated from my martinis and David is intently watching Real Time with Bill Maher so he is ENGAGED.  Joe lived to at least 102......16 more years to shoot for.  I'm in.  I think he is too.

We don't do that here.

Apparently this is an acceptable medical response in Fredericksburg - We don't do that here.  We don't inventory a GJ tube.  We don't tell physicians who order this for their patients that we do not have it in our inventory.  We don't call patients whose procedures require such GJ tube that they will be unable to have it installed.  We don't show patients/family how to use the jerry-rigged set-up of a GJ tube that was done on the fly.  We don't follow up home health care services to see if they accept the patient's insurance.  We don't notify doctors that we don't take their patient's insurance.  We don't notify the patient that home health care will not be forthcoming.  We don't find another home health provider that takes the patient's insurance.  We don't have many patients on Medicare. (A quick look around Gastrointerologist Associates of Fredericksburg refutes that statement.)

UNTIL I point out the lack of communication is counterproductive nothing got done.  It was another excruciating day of battling with Interventional Radiology at MW hospital.  The intake nurse informed us that they had no GJ tubes in the hospital and asked if we brought it with us!!!  Later we were dealing with people who thought that they were helping when they were not because they did not have enough information and were making assumptions that were not valid.  Yes, Dr. Vaughn is treating David.  Yes, Dr. Vaughn is a hematologist/oncologist.  No David does not have cancer - but the IR folks plugged him into the cancer dietitian who was halfway through her "thing" before she realized that doesn't do this.  When she got nowhere with the GI practice and the home healthcare company that the GI practice assured her were on board, I took David from the outpatient part of the hospital with his jerry-rigged Jtube threaded through his Gtube with colorful ports for each and a kind of twist tie holding it all together, to the GI practice and started my litany of complaints.  This is because he cannot be fed through the J tube without a pump, bags and possibly a different nutrition formula that would be supplied by the phantom home health company.  After about 15 minutes the perky nurse manager for the practice told me "oh  We faxed everything to the company we usually use but they don't' take his kind of Medicare (I was unaware that there were different kinds of Medicare.). There is another company and they will contact you within 24 hours."  OK so this is wrong on so many fronts.  No apology.  No offer to expedite the matter.  And she was smiling.  I asked to speak to her supervisor who did apologize and asked perky nurse manager to give us a timeline.  I complained that their procedure was flawed and that communication was terrible.  Before making an appointment for a patient to receive a device they should verify that said device was going to be available.  Before placing a device into an elderly patient who is loosing weight, they should verify that follow up care was in place.  I asked to speak to the Dr. Lee, the gastroenterologist who ordered the GJ tube.  This is his practice and he should know about the problem.  Basically he said NOT MY FAULT.  I don't tell IR what to order or what to do.  Eventually I asked him how many of these he does every year and he said that each doctor in their practice orders 3 - 4 a year.  So not many at all.  He was defensive, unapologetic and said that I can still use the G port to feed and medicate David.  Meanwhile perky nurse manager said she completed all the paper work for home health care for Dr. Lee to sign and then she would fax it to the company and they would respond in 24 to 48 hours.  So nothing changed, nothing was expedited.  Their assembly line medicine continued to crank through the waiting room.  We spent 7 hours with what should have been a 15 minute procedure in IR and an hour visit with a home healthcare nurse who delivered equipment and demonstrated its use.  Katya had to come to the hospital to rescue Jeff and take him to his train so that he could get to the airport for his 6:55 flight home.  Real quality time visiting in hospitals.....not.

At home I used the syringe to give David meds and breakfast about 4.  The syringe tip barely fit into the port and there was a lot of resistance because the G port is attached by a 45 degree angle so the flow is somewhat hampered.  I want to scream but instead had a slice of left-over pizza and two Reese mini peanut butter eggs.  I have mountains of assignments and exams to grade.  David is sleeping while sitting up on the couch so that he doesn't aspirate his breakfast or cause it to leak.

On the bright side the weather has improved

Slow ascent

I cannot think about what the ascent is to...normal?  Probably not a valid term.  What passes for normal here now differs vastly from normal last year.  Ascent to sanity...again what is sane in the absolute?  Around here?  Am I really feeling better about things or have I just gotten accustomed to the situation, accepting it and calming down.

Yesterday I started giving David an extra proton (acid) inhibitor to slow down his stomach activity.  I also told him to forgo exercising until the new feeing tube is placed because that seemed to generate lots of leaks.

This morning there was a small leak onto the bandage surrounding the sponge.  I changed it and his skin was irritated so I put some A&D around the opening and then three split sponges with loose tape across the bottom.  He did not leak all day through three full feelings, a trip to the temple and Target and another trip out to dinner.  He went to bed with the same feeding tube surround that seems more breathable and less irritating.  If this keeps up he should get all the nutrition from the Jevity.  He has lost a bit of weight and was down to 130.8 at this morning's weigh in.  His BP and heart rate are OK.  He is still coughing up globs of bloody mucous but seems more engaged, less irritated and more himself.  Tomorrow is Dsminus 3 for the devil drug.  It will be down to 10 mg for the next three days and then on our anniversary he will get NONE.  Whew!  The steroid is so terrible because it cannot be abruptly stopped once symptoms present or other, possibly worse, symptoms will occur.

Jeff and I enjoyed watching Homeland tonight.  I had the first three episodes of this season on the DVR.  He never saw it but got hooked with these three episodes.  Now I think he'd like to binge it.  I'm looking for something to binge with David once he turns that corner.  We binged Downton Abby up to the last two seasons and then watched them as they were broadcast.  We always binge House of Cards.  He did not care for Breaking Bad but I just loved it, despite knowing it would come to a bad end.  He lost interest in Orange is the New Black and I have yet to do last season's shows.  Tomorrow is his midterm exam:  the Sunday talking heads.  Fareed Zakari is his favorite and then there is Chuck Todd, Chris Wallace and others as time permits.  If he watches one two or three will tell me a lot about how much of David is released from steroids.  I have this week's Scandal to tempt him......and tomorrow will be a new Madam Secretary.  Both are loosely based on politics but nothing can match the West Wing.  Maybe I can find all of those for him for nostalgia-watching.

Friday, Feeding tube change,

The new feeding strategy is a GJ tube, a combo gastric jejunum that allows meds to go into the stomach but the big volume of food and water to go directly into the intestine.  This procedure is scheduled for Monday at 10.  I will be unable to teach at the same time so Spring Break is extended, sort of.  I will give them something to do.

Last night we went to National airport and picked up Jeff and got home just after midnight.  We were out of here just after 9 this morning for Georgetown and Dr. Davidson.  He found nothing to worry about in the CT or PET and did not poke around David's mouth and nose very much because of the bleeding issue and low platelet count.  He and I were chatting about this and David said Go home now.  Go home now.  I told him no I was going to finish talking with Dr. Davidson.  Dr Davidson good David's hand and said David I found nothing on your scans to indicate a return of cancer or anything to worry about.  We made a follow up appointment for next March.  Traffic was bad on the way home and it took about two hours.  The feeding tube leaked so much that I just put David's (washable) jacket over it and we started home.  He was just into the car when he asked for a urinal, at the entrance to the Physician's Office building with lots of people around.  So we got a urinal and I had a big towel to shield the view.  We sealed it into a plastic bag because the urinals are not leak proof.  He used the second urinal on I95.  At home we did a complete change of clothes and feeding tube sponges, everyone had lunch.  Jeff went to Subway for a tuna sub that we split.  Now both Jeff and David are sleeping and I'm about to watch something that I may ask my students to watch when I cancel Monday's class.  I think that I glimpse the light at the end.

The I hate prednisone page

I really hate prednisone.  David has all of the infrequent side effects:  irritability, confusion, mental impairment.  He is tapering off of it but this will take 6 more days.  Last Thursday his platelet count was 29.  Today it was 29.  Dr. Vaughn saw us today and we discussed options and I agree with him totally...he also studied under Dr. Macik and participated in the study she published.  He also consults with her on difficulty cases like David.  I told him about David's symptoms including that last night he asked Than, Katya and I, Why am I still living.  My quality of life sucks.  I want to die.  I ascribe that mind set to the prednisone.  I also told the doctor about Saturday night/Sunday morning confusion and that he thinks everything of TV is a repeat.  He has had CT and PET scans that do not indicate any probably problem in his brain. Dr. Vaughn wants to give David Nplate injections weekly to raise his platelet count and prevent bleeding.  David has had bloody mucous when coughing and blowing his nose.  David said. No, No, NO, NO, NO, NO, NO.  Go home now!  Put on his coat and walked out.  I started crying and Dr. Vaughn said that once he is off prednisone he will regain his former mind frame.  He invited me to call him anytime and said that he will make time to treat David right away if he changes his mind.  Instead of coming home David agreed to go to Costco with me and to walk in the mall.  The mall walk that formerly took us 30 minutes took 1 1/4 hours.  He walked like a glacier and took two bathroom stops and three rests.  During one rest I went to the card store to get BD cards for grandchildren and he was asleep when I got back.  He held onto his walking stick with one hand and me with the other for the last third of the walk but REFUSED to cut it short.  (That's my David.  The lower doses of the devil drug are letting some of him back to me.)

At home I gave him lunch and he dozed off on the couch.  About an hour later I noticed that the feeding tube was not just leaking, it spilled out to soak his clothes, ruined his checkbook, soaked his credit card case and all of the cards, soaked his iPhone case (that I removed in time to save the phone itself).  The cushion he sits on and the couch slipcover were soaked.  Luckily the Scotch guard saved the couch cushion.  I went into his bed and found that he'd leaked there last night and it wet the sheet, mattress pad and the allergy cover but spared the mattress.  I had a protective and that the hospital uses but that was for urinary protection and didn't go far enough up.  Well several loads of laundry later all is clean.  I was challenged and went to the drug store.  I got maxi pads and self adhesive ace bandages and Jerry rigged a pad around the tube and then held it tight to the skin with the ace bandage wrapped around his entire body.  It seemed to hold in the short run.  I made calls to the department in the hospital and to Dr. Clemo without success.  If the leak continues, it's the ER.  We're just not equipped to deal with anymore.

He'd been looking at our legacy picture on the wall and said he looks good with teeth and wondered where his were.  I found them today and got him denture cleaner and adhesive.  Tomorrow he is going to try to get them into his mouth and see about wearing them to the Great Lives lecture tomorrow night.  I told him I want to go if he is not dripping stomach fluid from his feeding tube.

Those are our adventures today.  I really really really HATE prednisone.

Tv irritates David

Last night was restful.  David got up in the middle and took his thyroid meds but nothing else and I did the breakfast stuff with him.  We are going to try and go to Richmond later today to see an exhibit at the VMFA and then hit Trader Joes to replenish some stuff.  I cannot watch TV or David has a tantrum saying that everything is repeated and I play it over and over and over.  He ways that it is my memory that is bad.  Sigh.  I wish that he gardened or had something that required very little thinking.  I don't know what to do with him.  He sits on the couch and falls asleep then wakes up annoyed when the TV is on.  I can read.  I gave him some coffee to keep him awake during the day so that he might sleep better tonight.  Getting him out and walking around is his only interest.

Richard gave me some recommendations about meds for ITP  that I immediately researched for side effects and I think he hit upon a winner that was also studied by a doctor at UVA, the only local doctor who seems interested in non-malignant blood diseases.  She really likes the drug and found no mental incapacity, confusion or disorientation associated with use over 52 weeks.  The other side effects seem to be manageable.  The long term stuff is probably not relevant at his age as they tend to occur 15 - 10 years out.

Than and Katya took David for a mall walk at 2 yesterday and I took a nap.  Then we went shopping at the grocery store.

At least the weather is probably not going to be terrible.  While snow is still predicted for Monday night and Tuesday, the temperature will not drop below freezing and so the snow should land and melt rather than accumulate.  It messed up Jeff's flight and he will not get here until late Thursday night.

Either Saturday night or Sunday morning

About 15 minutes ago I was awakened by my cell phone and wondered What in the.....?  It was the guy across the street wondering if David got into the house and telling me that David's car was running with the door open.  So I got up and sure enough.  David was in long underwear in hiking shoes, his down coat with the feeding tube holder around his neck trying to open hearing aid batteries in the bedroom.  I sleep across the house in the guest room these days.  He said he know what he was doing and said No NO NO NO when I told him I was going to turn off the car.  Well, I did.  Then I came back in and told him to go back to bed and helped him off with his coat. He had on 2 pair of long underwear but no "outer" wear.  The room was full of clothes.  Wet tee shirts from the leaking feeding tube, wet underwear, socks, pants, a couple of shirts, pajamas dampened by the wet stuff and several pair of shoes.  I noticed that he was not wearing the disposable underwear and he told he'd tried it but it didn't work and was really upset with me.  I got a pair for him and he let me help him into them.  I put some long underwear over it, covered him and said good night.  He took his hearing aids out, placed them into the case, turned out the light and I hope that he is sleeping.  I have the car keys and he will NOT be meeting Fred to walk.  He gets worried about not getting to the park on time and last week tried to go at 5 a.m.  I stopped that when he couldn't find his keys.  After getting him to bed I checked the kitchen where I laid out the morning food and meds. As far as I can tell, he gave himself breakfast Jevity (his food) and possibly a decongestant and antibiotic as the dosing cup for the Mucinex and the syringe for the antibiotic seem to have been washed.  He didn't take morning medications.  Those containers still had the powdered meds in them.

I am totally furious with the hematologist who did not warn us of the dangers of memory incapacity with steroids.  Earlier today I thought he was more "with it" but now I know better.  Not only is he very confused and disoriented; it is hard for him to stay asleep, another wonderful side effect.  This is awful and if he doesn't snap out of it, he cannot stay at home.  I am not equipped to run a single patient nursing facility and the house is not secure.

I spent the day researching ITP and any reasonably local experts.  I found only one within 75 miles.  She is at UVA Medical Center and has published in the peer-reviewed journal Blood.  I think I have a game plan.  He has an unresponsive case.  Protocols vary based on test results that pinpoint the part of the pathway that is being affected.  Since hematologists are also oncologists, most of their practice is oncology and that is where their interest lies.  ITP does not affect many non-cancer patients or many of the elderly and the type that does not respond to first or second line treatments is rare.

I am exhausted, depressed and very sad that he is going through this.  He must be scared.  After having a tantrum with me, he calms down and does what I ask of him.  I was too tired to walk with him today but tomorrow we have to walk.  That seems to make him less confused as well as tired. The silver lining is that he is no longer trying to print stuff from his computer that won't talk to the printer.  That drove me batshit.  Windows 10 and the HP printer do not communicate well.  The workaround is to email the stuff to the printer rather than print it.  This only works if it is possible to email something.  He can print from his iPad but keeps forgetting that.  I can try going back to sleep since I have the keys hidden from him.

Down the rabbit hole

David's memory is either gone or taking a break since Saturday.  Either way he left his car doors wide open as well as the garage door to the house and coat closet, forgot how to get to the hospital, forgot what to call his iPhone and how to do most of the stuff on it, did not go to get bloodwork at the Hematology associates place where we'd been going but instead went to Mary Washington lab with no lab sheet and finally did not go to his medical apt with Dr. Clemo.  Since he told me that he had bloodwork done and a cotton ball taped to his arm, I called the Hematology Associates for results, was told he was a no show two days in a row and if he is having so many issues maybe it is a stroke and I should take him to the ER immediately.  Well, I decided not to do that and eventually got the info about where he actually went for the bloodwork..  He has NO other symptoms of stroke.  I did wonder if the platelets were so low that he had a brain bleed but cannot talk with the P.A., much less an actual physician.  David's arms are a mass of black and blue bruises.  His face and legs also have bruises.  I get it; his blood won't clot.  I would REALLY like to know the level and hope that the Mary Washington lab did that test and has those numbers for us.  Dr. Clemo's nurse did not call me back either so we are in an information whiteout.  I will place new calls tomorrow morning before I go to teach and keep my phone on in the classroom.
In his current condition I do not think that I can go to TX.  This is terribly upsetting to me but David really seems to need me to help him with daily life.  His ability to communicate is limited.  He searches for words and concepts a lot.  He played a game that Lori recommended and seemed to enjoy it. It was short.  He played a game of Chess, won and decided that was enough of that.  Oh, and his neurologist is leaving and is sending his patients back to their primary care doctors for interim care........if the primary care doctor could handle it then why did she refer David to the specialist?
Just in case, on the outside chance, that I am able to go to TX, I'm going to pack the camera equipment for Sabrina distributing the weight over a couple of suitcases and color my hair tonight.  It will get the camera equipment out of laundry baskets on the kitchen floor and my hair could use freshening anyway.
He seems to be doing something with his iPad.  I am amazed that he can use it.  His hands usually tremble and they are rock steady using a stylus.

Feeding tubes, electronics and PET scans

After hours waiting for people to make decisions and clear out ORs, David had his feeding tube fixed.  It does not leak.  However, he remains sure that it is going to leak.  The current tube has a 28 mm diameter. Eight years ago he started with one at 12 mm.  As they age it becomes incumbent to use larger and larger diameters to meet a snug fit in the oriface.  The gastric tubes max out at 30 mm.  The sweet nurse told him that
1.  This one would not leak now because they fixed it and tested it and
2.  The sizes max out at 30 mm and that the hospital does not stock that size and would have to special order it.
I asked about turnaround time and she said maybe overnight maybe several days.  At this point David was totally pissed off and said that she should order one to have on hand for him and she said they could not do it and mentioned something about fiscal constraints.  He asked for a Patient Advocate.  Imagine this with his voice being muffled with mucous so that she had to ask him to repeat things or ask me what he said.  I have "David" hearing (something like "mother"hearing) and can understand him.  Then imagine him not hearing well due to the same mucous and so it went.  I started searching Amazon for French GI Tubes and found a 30 mm diameter one.  I figured we could order it as a backup.  The nurse went away ostensibly to get a patient advocate.  David was upset and wanted to leave.  I convinced him to wait since he asked the nurse to do something and she was trying to accommodate him.  After 10 or 15 minutes another person came into the room and said that they DO have a 30 mm diameter tube but he was against putting it in until it was needed.  I guess nurse #1 thought David was demanding that size immediately.  I translated and we finally left after over 4 hours for a 10 minute procedure with the direct phone number to the Interventional Radiology unit and directions to call them directly with any problems and then to get David's internist to write the order.  Relieved we took the long trip back to the lobby with David in the wheelchair.  He insisted on stopping at patient registration and got a number for the patient advocate.

As we exited the building he began to pat his pockets and I noticed his iPhone was missing from its holder.  It was turned off and so I could not locate it with the Find my iPhone app.  After 45 minutes of backtracking the phone was located in the OR and returned to David.  This time the phone rang as we walked out and I told him to wait on the bench while I got the car.  He sat down with his cane, Kindle Fire and phone.  I got the car.  When he saw the car he jumped up and rushed to the car for me to talk on the phone.  It was the Imaging Center trying to schedule his PET scan for tomorrow but they couldn't understand him and he couldn't understand them.  I took over and the PET is scheduled for tomorrow at 10:30.  I put the apt into the calendar and we drove to Basilico where I gave him his breakfast (at 2:30 p.m.) and then we went inside for my lunch (courtesy of Jeff Hill's gift card).  I placed my order, got a number for the table and my drink and sat in a booth with David.  We talked and we're feeling better and less stress but when no food arrived after 30 minutes I went back to the counter and....the order taker marked it for take out and it had been sitting there.  So I got a refund and they redid the gnocchi.  It was finally served.  I ate.  We got ready to leave and I Asked him if he had his Kindle Fire.  He couldn't find it in our booth or the rest room.  Back to the hospital.  He went in and after 20 minutes or so emerged with said Kindle Fire.

By then we were each on our last nerves and came right home rather than shop for groceries.  He had his lunchtime meds and went to bed for a nap.  I dozed off in the recliner.  I just had a cup of herbal tea and six cookies for dinner.  I gave up alcohol for Lent and God is REALLY testing me.

So this is a slice of our lives these days.  At least one medical appointment each day.  Progressively worse prognoses.  It is really hard.  Things could still be OK.  The feeding tube could work well now.  The platelet count could mysteriously climb just as mysteriously as it dropped and the bone marrow biopsy could show normal activity.  The PET scan could determine that shadow on the CT is a surgical artifact from 2001 rather than a new tumor.  His cold or allergies will get better and he will be able to hear and be understood on the phone again.  That is my prayer for him.  I hope that everyone who reads this will also pray for this for him.

Just when you think nothing else can happen

So now the feeding tube is pouring out the contents of David's stomach and soaked his shirt, etc.  the doctor's office was trying to get us to go to the ER.  However the ER doesn't do feeding tube stuff...past experience.  So the interventional radiology nurse saw him and did a quick fix and made an appointment with the hospital for a new tube at 11 tomorrow.  This means that I have to cut my class short because his hearing has deteriorated so much that he doesn't hear clearly and if there are issues then.......Meanwhile, he wants to go to a political meeting tonight.  I am tempted to let him go to the hospital alone, but experience says that the fallout is too much when he tries to understand options or dates and times and gets them wrong.  I feel so bad for him.  He can't catch a break these days.  On the plus side, he feels fine, no pain and good oxygen.

Fat Tuesday and Ash Wednesday update

Tuesday:  Platelet count has decreased (in thousands) from 50 on Friday to 39 today.  That is the wrong direction.  After much deliberation David decided to have a bone marrow biopsy tomorrow morning at 8.  It will take a couple of weeks for results to come back and then Dr. Vaughn can make a diagnosis and plan a treatment....we hope.  It may be four weekly infusions of Rituxitab to further suppress the immune system if the diagnosis of Idiopathic Thrompcytopenic Purpura (ITP).  We spoke with Lorri tonight and David said he is not worried.  I think that he is weary of all the doctor's visits.  He is really shaky and his balance is bad.  He fell while going into Costo earlier today but was OK when we went later to get more Prednisone...yes, he remains on 50 mg. per day until the results of the biopsy come back.  I'm not sure what they will find there because his red and white blood cells are stable and relatively normal.
Wednesday:  David had a bone marrow biopsy at 8:30 this morning.  He has slight pain during the process and was told to expect pain in about an hour, so he took some Tylenol and is feeling OK.  Right now he is sitting at the kitchen table and fell assleep when I was checking messages.  He has a 2:00 hair appointment so he'll wake up soon for that.  Danielle, who did the procedure, told him that they will get some results in a few days but the full panel of results will take a couple of weeks.  They will call him if there is a problem after reviewing the initial results.  He will see the hematologist, Dr. Vaughn, on March 15 at 9 a.m. To get the results and plan treatment.  I will be in TX but Jeff will be here to go with him and I will FaceTime into the appointment.
In other news the PET scan has been approved to get more information about the anomaly that showed up on the CT from Feb 10.  It seems to be the same thing that showed up in 2012 and 2015 but since the new CT was taken at a different hospital system there is no correlation (really?  Russia can hack our secure systems but two hospital systems won't share information?). He sees Dr. Davidson at Georgetown on March 17 so I'm hoping that the PET scan is sooner rather than later.