"Strength does not come from physical capacity. It comes from an indomitable will." ~Mahatma Gandhi

Saturday, November 16, 2013

Sonny's PEG tube was placed late yesterday and he came through the procedure like a champion. So now he will once again be able to receive his medications without having to swallow them, which though we do not like him to have the tube in, avoids the risk of him not receiving medications properly if he refuses to take them. (Sonny cannot handle whole pills, so his meds are crushed for him...they taste YUKKY.)

He will also be able to receive liquids via the tube, so hopefully future incidents of dehydration brought on by insensitive, harried, or downright lazy staff at the nursing home not taking the time to help him drink fluids regularly throughout the day can be avoided. Yes, I know, I shouldn't be critical...I know how valuable a CNA's time is and how demanding their jobs are and how downright horribly interruptive it is for them to have to take ten minutes out several times a day to assist a patient with drinking a glass of water. I am certain they DO have far more important duties than tending to the basic needs of patients who cannot care for themselves. Oh wait...attending to patient's needs IS the job of a CNA! My bad...I may have to re-think this. Hmmm...maybe there is simply a water shortage at his nursing home? Is there a water ration somewhere in the city that I am not aware of?

Nonetheless, hopefully Sonny will at least be better hydrated, which IS a plus (pardon me while I pull my tongue out of my cheek).

Otherwise he is improving, so we are hopeful that he will be discharged from the hospital by the end of the weekend. Thank you to Julie and Cristine for your kind thoughts, Tim for your thoughtful visit, to JD and Teri for the warm fuzzy eagle blanket that has give Sonny something beautiful to hold onto during his hospital stay, to our Mom for being so constantly present and level-headed for Sonny, and to Scott for just being here throughout even when it is painful.

"...The test of a civilization is the way that it cares for its helpless members."    ~Pearl S. Buck

Wednesday, June 19, 2013

Geez Louise, it has been a while!

To say that it has been a busy six months would be the understatement of the millennium. Here is a re-cap in a nutshell:

Sonny returned to the nursing home in mid-November after recovering from his heart attack and pneumonia. Re-gaining his strength was a long process, but in true "Sonny style" he fought his way back. He came home for Thanksgiving and Christmas, visited with the whole family who came, and as usual ate a ton of great food!

Not long into the new year Sonny developed a Hepatitis-A infection and recurring pneumonia, so spent several days at Northwest Hospital once again. At this point he is very well-recovered, though still not quite as spunky as usual. He has definitely found that stellar smile he likes to flash at us, though! And his love for anything chocolate persists no matter what.

One change is that he does have an indwelling tube in his tummy (invisible under his shirt) through which he receives liquids and his medications. Mom and I fought like wildcats to avoid having the tube placed because we knew that Sonny would not like it being there and we didn't want him to be fed through it when he is fully capable of eating by mouth. The reason we decided to go ahead with it was because his doctor at the hospital wisely pointed out that every time he has required hospitalization, he presented severely dehydrated and with fluctuating medication levels. Her opinion was that with the tube in place it would be easier for the staff to keep him well hydrated, and he would not refuse his medications when he specifically did not like the nurse administering them. She wrote into his medical orders that he is NOT to be fed foods through the tube, but that it is ONLY for hydration and medication. We had to put our foot down a few times when that order was ignored, but it seems that things are going well now.

A few people have asked "why the feeding thing is such a big issue". One reason is that for Sonny, food is a major enjoyment every day. Considering his limited abilities right now, his meals and snacks are one thing he is able to truly enjoy and we do not want him to lose that. It does take considerable time to assist Sonny with eating a full meal, and it even takes several minutes to help him drink a glass of thickened liquids...so the staff has to be willing to take that time on Sonny's behalf. (This is part of their job, so it should not be an issue.) It is definitely much easier and faster for them to hang a liquid nutrition bag and just let it run into the feeding tube while they tend to something else, but then Sonny really gets no pleasure whatsoever from having a tasty meal. Also, it took Sonny almost 2 years after his accident to be able to eat ordinary solid foods and swallow without a constant threat of choking. He has to continue regularly using that skill in order to keep it...if he stops drinking and eating by mouth, that skill of swallowing could be lost and he would have to start all over again. Again, not something we want him to have to do. Lastly, the human mouth is designed to be regularly wet and rinsed with liquid. If a person never drinks liquids by mouth, the mucosa of the inner cheeks, tongue and palate become laden with bacteria and fungi that can cause health problems all on their own, including threatening the stability of the teeth. So, we encourage the staff to give Sonny drinks by mouth whenever possible and we do so ourselves whenever we visit.

**Notes to visitors: 

**1. Sonny still only drinks thickened liquids, never ordinary water or soda pop, etc. If you would like to offer him a drink, simply ask a staff member for some nectar thick water or juice for Sonny and they will get it from the kitchen for you. He will slowly sip it from the edge of the cup if you hold it to his lips for him. Easy as pie. :)
**2. Sonny is extremely susceptible to sunburn! He LOVES going outside, so when you visit feel free to wheel him outside to the courtyard off the dining room, the sidewalk outside, etc. But please be mindful of the sun. He has several ball caps on the wall in his room which work well for shading his face, so you just have to keep an eye on his arms and hands. The courtyard has several tables with awnings so that you can sit outside but still be in the shade if you prefer.
**3. As I mentioned, Sonny still loves chocolate! Milky Way bars or plain Hershey chocolate bars are great, but don't baby him too much! If you break off a bite-sized piece and put it in his fingers, he can usually put it into his mouth himself and it is good for him to do so. Sometimes if he is tired he won't want to...just use your judgment if you think that is the case and help if you think he needs a little assistance.

He can also receive emails, so I have posted those instructions as well. If you would like to send Sonny any other sort of gift, including gift cards, store certificates, etc, please contact me (Lorrie, contact info below) about sending them to me so I can take them to him directly...we exercise a great deal of caution, as certain items of value have a tendency to disappear from his room if we are not careful.

Email: (I take these in to read to him)
SonnyIsGreat@gmail.com

Facebook: (I make sure he sees new posts, photos, etc!)
www.facebook.com/SonnyPerencevic

Lorrie's contact info:
Cell: 206.330.3269
Email: Lorrie@TheCommunityGate.org

So, with no further ado I will sign off for now. As summer arrives, everyone has busy schedules ad lots of activities. I know Sonny would love to see his old friends, so I hope some of you folks will be in touch.

***Special thanks to Angela for her visits and ongoing support! Also Teri and JD for staying in touch and being great friends! Tim, you have been a constant encouragement for Sonny and a faithful friend as well! Kudos to my Mom for putting so much energy into Sonny's care even when her own health has suffered...it is rough sometimes but she has done such amazing things. Thanks also to Scott, who handled his first meeting with Sonny with such grace and respect...what a blessing. 

"The sky is NOT the limit...there are footprints on the moon."