Joan-Yaffa

Ciao and Hello to all of you out there.

We are truly sorry for having been silent the last few weeks. Even though news travels fast, there may be some of you who haven't heard that our dear Mommy and Nonni passed on Mothers day, May 10 @ 7pm. Sitting down and trying to put into words what was happening towards the end has not been possible up until now. I will do my best to give you a general picture. As you all know these 7 months have been a real rollercoaster. She really fought tooth and nail every minute until the bitter end. In the last few months, at least 3 times, she was very close to being discharged but every time there was something that didn't allow us to do so. She overcame 4 months of very serious infections, she overcame the disappointment of no discharge and was able to stay super positive throughout the entire ordeal. She was able to manage her nausea, her pain, and her daily dialysis. It may seem obvious to some, but as much as we thought we were prepared, we were truly not! By the 15th of April her wonderful Kidney Doctor had made it clear to us that her kidneys were no longer responding well to dialysis. He explained it well to us and to her. At that time he felt she probably had about 2 weeks before we would have to stop dialysis. Fortunately, we never had to say much or do much. On may 2 she had her last dialysis and she had already started sleeping more and never questioned the missing dialysis. They explained that she would just go into a deep sleep, that it's one of the most peaceful and painless ways to go. They all seemed to agree, going by experience that once there was no dialysis it would most likely not be more then 2-4 days in the deep, peaceful sleep. Any longer would be very, very unlikely considering her overall condition. By the 6th day of what was to be confort care she asked us when she could leave the hospital, and was reaching up to the top of her bed to lift and do pull ups. She was so strong!! Once again leaving all of us, medical staff included, surprised. We had to continue with more and more pain medication, and more meds. to help her fall into the" deep sleep". She was very strong, and really seemed to not want to stop fighting. It took 9 days of trying to help her sleep while we were dreaming of sleeping and not getting any at all!! If there is anything positive that came of this ordeal, it was the most amazing loving time we got to spend together. No secret that our relationship , like many mother-daughter relationships was not without conflict and struggle. From the moment she entered the hospital, like magic, it was all gone. We never had so many kisses, so many sweet, tender, fun and loving times. It made it all so much easier and yet more difficult, if that's possible. We remain with the love , the kisses, and the stories and are truly amazed at how wonderful she was the entire time. Thank you again to all of you who have so generously come forward and helped us, help her, in these challenging times. For those who desire to come to the service it will be at the Jewish Home for the Elderly at 302 Silver Avenue (at the corner of Mission), San Francisco, CA., 94112. She worked here for the passed 8 years, Wednesday 27th of May at 10.30 am in the synagogue. We welcome anyone who feels so inclined, and also would never take it personal if you can't make it.

We love you and thank you so much again for all the support.
Orly, Miriam Dylan

7th of may 2009

Hello and Ciao,

Taking a minute just to let you know we are at are 5th day no Dyalisis, and more then 1 week no itravenus feeding. Me and Orly have set up camp here, Dylan is with his big brother in Sacramento and this are to say the least ......STRANGE DAYS INDEED!!! Feel free to send good thoughts. We remind her that she is Loved by all of you. I must return to her. We will do our best and be in touch. Much Love Miriam

P.S. feel free to write anything to her /for her and we will read it to her with joy.

update!!!!

Ciao a tutti, we are in a new reality now. The kidney doc told us 2 days ago that her kidneys are not responding well to dialisi anymore. She started intervenes feeding one week ago and it is giving her nutrition but with her body basically shutting down it is relative what this will do. The doc in fact told us ,and her, that he thinks she has 2 weeks if all goes well, meaning no complication. On the other hand, its a mystery and maybe she will go loner but the reality is that this is not going to get better, she cannot eat anything, she is managing her pain with a self regulator morphine and she is still pretty lucid when shes not sleeping which is often. But she is getting confused and has had hallucinations , we are hoping that this will all play out with some equilibrium. We are always there and she is aware of what the doc told her ,she had a heavy heart and tears with not many words to follow. Meanwhile we are enjoying being with her as much as possible and ,..the rest is still unwritten.......Sorry if this may seem confusing ,we will let you Know ,it is not shocking and yet it is !!We send love.

Update yaffa!

Ciao a tutti! We have spent the most intense last 2 weeks if you can imagine that. For a series of events , a little over 2 weeks ago we had to stop completely with the tube feeding. She was in a lot of pain and not tolerating the intake of food. After some more tests we established that she has an "ilius" of the intestine, and basically this means she has a very hard time with anything going in. So, they decided to pump everything out of her stomach. With a bigger tube in her nose they are able to slowly pump out. Meanwhile its been over 2 weeks of no nutrition at all ,just liquid intervenes. She had a little less pain but she also started to really loose energy and has spent all this time mostly sleeping. The docs explained that they were hoping to start tube feeding again but all signs show she cannot deal. Last resort ,something we had discussed earlier on and were able to avoid, now is a must. Intervenes feeding. This is the last resort for her to get the nutrition she needs trying to get her stomach as empty as possible and letting her intestine relax. It is very high risk for infection, it could fatigue the liver to the point of having to stop ,and it could also have other complications on the pancreas ect... On the other hand not doing it means certain death.Anyway, she is very aware of all of this, although after more then 2 weeks of no nutrition and pain medication she did have moments of mental confusion, some hallucinations, and anxiety. But, she is aware enough to know whats going on so yesterday the "pick line" was put in to start the intervenes feeding. They say it will take at least 1 week before we will see any changes. In the meantime she sleeps a lot, too weak to even speak. The only good news is she is in a little less pain, and sleeping is helping her cope.Unfortunately, it does not look like leaving the hospital will be realistic for a very, very, long time if ever.So, if she has no complication we are looking at some improvement, more energy, maybe eventually more physical therapy, and maybe she will be able to turn the feeding off at night and have a little food during the day just for the pure pleasure. If she can tolerate it ,if not the intervenes feeding will be her source of nutrition. She is still dialisi 4 days a week and considering that everything is relative ,and you can get used to anything, this is the good news!Now it is truly a day at a time, we shall see, hopefully she will be stronger and able to move a bit and this should all start happening soon. Meanwhile we are carrying on as best as can be expected and really hope to give you all better news very soon. We send love and thanks to all of you and hope to see you soon.Orly, Miriam ,Dylan

update yaffa

Ciao a tutti! I always hope you in Italy can read this or find an easy way to get translation. Unfortunately we don't really have great news. Yaffa is still in the same situation .4 days dialisi, tube feeding now only @ night, they turn it off in the day so she can start eating again but she is still having a hard time with that. Nausea and pain mostly, it is a constant juggling act with the medications to make her feel just right. She still has a urinary track infection which they are not giving her antibiotics for and we still don,t know why. We will be meeting again with the doct. next week to understand more. For now it is just unbearable for us to see her still in the same situation. Very little movement, she has not really walked in a really long time now. She is week and tired and in pain but her spirits are pretty good when she is not depressed! That's a daily struggle.Let us know if you understand this . And, Andre', please pass this on to those who still don't know how to read the blog.We will let you know if anything changes ,for now just more of the same, a very, very long road ahead. We hope to see you soon. We hope to give you better news next time. Thank you ,love and peace the girls!

up date yaffa

Once again, more of the same. Not really worst, but not really better.Just last week she started again with nose feeding because she is not eating well, not putting on weight and not gaining any strength.It is not without problems they had to stop it a few times, today they will change the quality of the "formula" because her potassium is way too high and they dont really know why. So, then they had to stop antibiotics to find out 1 week later she had a UIT urinary track infection, started antibiotics again then realized maybe its not an infection so stop ed again. She is struggling to do her physical therapy, has been able to sit only little bit @ a time not strong enough to walk and the docs, are still talking of discharge without real reason or improvement. She is still on 4 days a week dialysis and no transitional place will even consider taking her unless she is on a 3 day plan. So we are waiting to speak to the entire team for some clarity any day and meanwhile we keep on keeping on!!!!It is a bit crazy making ,not only her 3 steps forward and 5 back but the docs who cannot stick to a plan .We are looking for some stability before talk of discharge and we have not had that yet. Hopefully she will do o.k. with the tube feeding and gain some real strength and weight. We will keep you informed and forgive us again for not writing more often, it is hard. Thank you all for everything and all the support we surely feel. Hope soon to give some better news. We love you and we will write soon again.

Up date our mom

Ciao a tutti! Sorry again for the time it takes to update. Anyway, after weeks of more or less "status quo" meaning she was eating a bit more, started to take some steps ,sitting up a bit longer everyday ,in the past few days she has gone through some more tests. Her pain increased ,the docs dont really know why. She is not putting on any weight ,not eating again hardly, .They tried a "nuclear" test took blood isolated the white cells, re injected to follow the path and locate the infection. Well, the results of this test does not match perfectly the other tests , so , more confusion. The sure thing is her pain got so bad the last few days they changed meds and started her on morphine which she administrates herself. She does have 2 infections identified by the nuclear test but the antibiotics are not doing the job. The doc explained that the meds do 90 % and then the patients body must do the rest, She is obviously not able to do the rest .So, in a nut shell. she is doing a little worst, it remains a difficult task .They are talking intervenes feeding but it is very high risk for infection and the team is now discussing. She is one of the most complicated and mysterious cases ever seen here. On that note our life is more of the same we are bringing food and spending as much time as we can, she is in pretty good spirits considering. Dialysis is still daily and we are hoping and fighting!Thank you all again for everything and we hope to bring better news next time.

Update!

So, so , sorry, it is the very first time we have found the time to sit and write. There is still so much catching up to do. The most important thing is that Yaffa seems to be moving in the right direction not without set backs and difficulties. She is gaining her strength back slowly. She is sitting a bit longer every day ,and eating a bit more consistently . Although this is all good, just yesterday again they found another bacteria which we don't know for sure how, what, where, etc.... We must hope that they will find the right antibiotic. It seems like 4 steps forward and 5 backwards. It remains all a big mystery and the road ahead is long. She seems to be in pretty good spirits most of the time and we are much happier all in all with this place and these docs. Until she is clear of all bugs there will be no talk of discharge and when that time comes we are still working on getting her into the Jewish home for transition.Who knows? It is still a daily struggle with all this bureaucracy.She is still on daily dialysis and is struggling to put on weight. She is doing physical therapy and slowly ,slowly working her way towards walking. Still not really happening Anyway, we cant thank you all enough for hanging in there with us and she also sends her thanks and wishes to soon do it in person. We apologize for the delay in this update but truly the lack of time is still a big issue. No news means we are moving in this direction with no big set backs. Today we will know more about this new ,or maybe old bug they found and if there should be any problem we will let you know. If not it means they will keep bombarding her with antibiotics and hope they do the job! Thank you all again ,we hope next time to have better news. Love from us to all of you .Peace!