Slow but sure

Things are moving along, but very slowly. The attending today said maybe Peter could be discharged to the clinic this week, and that we should realistically plan to be in Durham for 3-6 weeks after that followed up by weekly visits back to Durham. They continue to introduce new foods very slowly - can add potatoes (no skins), rice krispies and grits (oh boy) this week.


Peter is now wearing thigh high elastic stockings and full length arm stockings to help with the swelling he has been experiencing. The occupational therapist said he is to wear the legs until the swelling goes down and stays down and to wear the arms for about 3 months. The arms are held on by "cross your heart straps" so Peter feels as if he is wearing a bra. The legs tend to slip down so I have threatened to get him a garter belt. Maybe I'll bring him a feather boa to go with all his undergarments!


He seems to be in good spirits - eager to get out of the hospital, but willing to take all the time needed and go slowly so there is no relapse.


I am still having a hard time dealing with Annie's dying. I will be going to Wilmington tomorrow and am not looking forward to the quiet - no tapping of little paws. I will be giving what I can to the local shelter, throwing away some stuff, and saving some of Annie's "babies". We plan to plant a pink dogwood tree in her memory. We will make the hole a bit larger than needed so we can put Annie's ashes and her "babies" in with the tree. With the drought I will have to make sure to water this special tree daily.

Not much else is going on here. It's cold and rainy - what happened to the nice sunny and 80 degrees from Friday? I am ready for spring!!!

Wendy

Bananas yeah!

Things are definitely looking up. The doctor's said we could add bananas to Peter's diet today and he is really looking forward to it. Still on TPN and cutting it down slowly. Still hoping for discharge from hospital sometime next week. Then clinic.

Peter hopes to begin working from home next month. Since we have internet access at the hotel he will be able to work from there. He is looking forward to the activity, a chance to be doing something different for a change.

My cousin Lori is coming to visit next week. I will pick her up in Wilmington on Monday and we will drive to Durham on Tuesday. We'll goof off and have a good time.

Take care,

Wendy

PS Peter has his own email address at charter. It's p.yandow@charter.net He'd love to hear from all of you.

Good news and bad

Peter continues to do well. He's been eating oatmeal, broth and popsicles with no problems. Maybe tomorrow or Thursday they will add more food to his list. Since they are moving very slowly this time, he will probably be in the hospital until next week. Then we go to the clinic for out-patient treatment. We have no idea how long we will be at the clinic or when we will get home, sooner rather than later, I hope.

We had to put Annie down today. Heather called around 2 and said the petsitter had called and said Annie was ill and unable to get up. I met Heather and Annie at the vets. She just barely was able to stand and was in bad shape. They did bloodwork, xrays and an ultrasound. They found tumors in her liver - actually more tumors than liver. She also had fluid(some of it bloody) in her abdomen and some fluid in her lungs. All in all she was in bad shape. The vet felt that she was starting to be in pain and that due to her age (2 weeks shy of 11) the best choice would be to put her to sleep. She said we could have an oncologist see her and maybe try surgery to remove the tumors, but felt that was not a good option. Heather and I stayed with her until the end. She seemed to go peacefully and is no longer in pain. I have been crying on and off since 2pm. Peter and I are sure going to miss our little "squirrley" girl.

Wendy

Clear liquids

Well, he's progressed to jello and broth and so far all is well. The drs. have decided to add another immunosuppressant to help the gut heal faster. Maybe by Sunday or Monday he can start soft solids again. The runs are way down today so that is a good sign. He seems to feel better and is very optimistic.

Peter has been learning progressive relaxation techniques and they seem to be helping. He seems to feel better able to handle the situation he finds himself in.

Yesterday as I was leaving the transplant unit there was a patient be wheeled in who looked familiar. It turned out that it was one of the ladies we had met at the clinic. She is also from Wilmington and we had seen her at the oncologist's office last month. She was admitted yesterday with the same problems that Peter has been having. She has been unable to eat in 3 weeks, has had diarhea and lost alot of weight. She was in the hospital in Wilmington but they were unable to do anything for her. Initial diagnosis: GVHD of the gut. The silver lining to this is that she is feeling like Peter did when he was admitted and he is able to talk with her and help her. It reminds him of how far he has come and that helps alot with bolstering his spirits.

Kim & Todd will get to Raleigh tonight and then we will see them tomorrow. Not sure what our plans are.

Happy Easter to all.

Wendy

Ice chips again

Took a small step backward today - back to ice chips only. Peter's gut is not healed enough yet to tolerate even semi-solid food, so it's TPN and ice chips again. No idea now when Peter will be out of the hospital or when we will return to Wilmington, don't think the drs have any idea either.

I am in Wilmington tonight - needed to get stuff we needed and get stuff done around the house. I need to stop bringing more stuff back with me or otherwise we will end up riding home like the Clampetts again (for those of you not old enough, they were hillbillies who moved to Beverly Hills with stuff hanging off the truck.

Homewood Suites is nice. They have a breakfast buffet every day and dinner 4 nights/week. At least then I eat 2 meals/day. I have a balcony and I can look out over I-40 and watch all the traffic go by!

Not much else is going on here.

Wendy

Slow but sure

Peter continues to make slow progress. At this point eating is trial and error - eat something and if you don't puke or poop uncontrollably, then you can eat it again. He had scrambled eggs and oatmeal this morning and the jury is still out on them. He took some anti-nausea medicine and has been in and out of sleep ever since, but all is still where it should be.

We are still hoping he will get out mid week, but no one mentioned it during rounds this morning. They are continuing to switch his meds from IV to oral and they are switching his TPN to nighttime only. Hopefully that will increase his appetite.

He has some sort of bug that is antibiotic resistant so he is on contact isolation. it is not something that healthy people can get, but could be a big problem for others on the unit. So, while anyone is in his room we must wear gloves and gowns,and when he leaves the room he wears gloves and gown. Luckily they have XL gloves, so I can be fairly comfortable, but they sure get hot and sweaty, and typing with rubber gloves on is not easy. Needless to say, I am not doing any stitching right now either - would probably sew whatever to the gloves!

Not much else is new here.

Wendy

Progressing to soft foods

All continues to go well. Peter is now allowed soft foods. So far he has tolerated everything he has been given very well. Still has the diarhea but is much less. The doctors say he might be able to be discharged to the clinic the beginning of next week. First they need to get him off of IV meds and IV nutrition. He is up to 152 pounds - alot of that is fluids because he was very dehydrated. He looks much better - his face has filled in alot and his color is much better. He's up and walking and will be starting an exercise program soon!

Not much else is going on - same old same old.

Wendy

Jello - mmmmgood!

Peter's making progress - clear liquids, broth and Jello! He has to make himself eat it, but it is much better than ice chips. He continues to improve; looks good and feels good. I'm hopeful he will be discharged Friday or Saturday. We will probably be back to daily clinic visits to check all his levels and his nutrition input. His dr. was in yesterday and he admitted that Peter was in worse shape than he had anticipated - the GVHD came on with a vengence. Now he's on the right meds and going in the right direction!

I'm checking into Homewood Suites today. I've enjoyed staying with my gang buddies - thanks again!!! It's nice to have someone to talk to.

Have a great day!

Wendy

Gaining weight and feeling better

Everything is looking up! Peter has gained about 10 lbs and is feeling much better. The drs. have finally gotten all the test results back and Peter only has GVHD of the colon - no infections of any kind, so the treatment they are giving him is the right one! He remains on TPN - IV nutrition and can only have ice chips. If they feel the colon is rested enough they may start him on clear liquids today and from what the nurses tell me he could be on that for awhile. They are going to monitor him really closely.

No word yet as to when he will be discharged from the hospital to the clinic. He can get the TPN at the clinic but not at home. I have been "sleeping around" staying with different friends for this past week and will check into Homewood Suites in Durham on Thursday.

Peter has met with the physical therapist and he has him on a program to use the treadmill, the bike and some free weights. He is very motivated to gain back some of the muscle mass he lost. He looks one hundred percent better than he did last week and knows he made the right decision to come back into the hospital.

Have a great day!

Wendy

Things are looking up!

Peter's been in the hospital since Wed. afternoon and looks and feels better. They finished most of the testing yesterday - still some bloodwork tests they are waiting on, but the general feeling is that it is GVHD (graft versus host disease). The CAT scan showed inflammation in the colon which was confirmed by the colonoscopy. There are lesions in the colon but don't know if they lesions caused the diarrhea or vice versa.

They installed a new Hickman catheter in his chest on Thursday and started the IV nutrition that night. He still is only allowed ice chips by mouth - no food to eat until the gut gets a chance to heal abit. The initial estimate was 5 days in the hospital, but that doesn't seem like it is realistic. I imagine it will be longer, and then a few weeks outpatient.

Peter's spirits are much better. He knows he is in the right place and is confident once again that all will be well, eventually - just not as fast as we had hoped. He has been talking with a counselor and that is helping also.

I forgot about "March Madness" here in NC and have been having a time trying to get a hotel room for 3 weeks straight. For now I am staying with friends and hope that by Thursday we will have a hotel room somewhere.
I'll keep this blog updated as best I can. I am bringing the laptop back to Durham with me today.

Wendy

Update

Peter was admitted back to 9200 at Duke yesterday. Hopefully it is only for 5-7 days so he can get some IV nutrition, his meds back in order and get some counseling. When he is discharged from the hospital we will be staying in Durham for 2-3 more weeks so that we can be sure that all is right and we don't need to do this again.

When I visited him last night his mental outlook was improved 100%! He feels that he is in the right place now and can get the help he needs. He will have another Hickman catheter put in today so he can get IV nutrition and they plan to do a CATscan of his chest, abdomen and pelvis to see if there is any other cause for his chronic diarrhea. When they weighed him yesterday he had lost 8 more pounds in 2 weeks so he is down almost 60 pounds since he was first hospitalized.

Due to the current flu outbreak Duke is pretty much on lockdown for patients. They are asking that only primary caregivers come, especially to units like 9200. I'll update the blog as often as I can. We both have our cellphones with us and I know Peter would appreciate phonecalls!

Keep us in your prayers,

Wendy

Bottomed out, I hope

Well, things have gone as they say "to hell in a handbasket". Peter continues to be unable to eat solid food and has to force himself to drink smoothies and Ensure.

Our friends Linda & Jim came by yesterday and Linda helped us to realize that things had gotten out of hand. Peter's inability to eat is probably the result of his body going into "starvation mode". This is not something he has any control over so he is going to need some counseling, both psychological and nutritional to get out of this hole. Linda made alot of suggestions of what we could do but Peter is very discouraged and feels like the best place for him is back at Duke. They can give him IV nutrtition, get his meds adjusted, and counseling so that once he begins to gain weight we can return home and follow-up with counseling here.

The plan at the moment is to call Duke tomorrow and request admission for IV nutrition. I think once they see him and talk to him they will agree.

Please keep up in your thoughts and prayers. This is the hardest time we have had so far and we need all the help we can get. I'm not sure yet where I will be staying but will update the blog as often as I can.

Wendy