Posted by Greg Helenihi Wednesday February 4, 2004

Well its been quite awhile since my last post. Dad is doing well and mom and I are still hanging in there trying to keep up with him. Apologies to all who have been checking the site for updates. The need to post updates seems to get overwhelmed by other needs since dad has been home. It is alot of work. Actually for me its not so much work as it is trying to constantly be aware of how he is doing and listening out for him. For mom its the same but more like work. We’re still working on a daily routine for him and although it is getting better, it is still difficult at times. Mom and I are both tired alot of the time just from doing the things that need to be done 24 hours a day, 7 days a week. We are still trying to find a way for both of us to get some proper sleep. All that being said, its great to have dad home. And as hard as it can be at times, we wouldn’t want to be doing anything else. We thank God that he is still with us and that he is doing as good as he is. What we are doing is what we should be doing. What we need to be doing. Dad deserves it and he is also working very hard.

Dad has been having speech therapy (with the E-Stim connected to this throat) 3 times a week. His efforts, the efforts of his therapist Becky, and the efforts of his throat doctor Dr. Belafsky have paid off. Today he did his second swallow study and now... he is cleared to eat everything except for thin liquids. Which means we can now feed him the things that he has been craving and asking for for about 3 or 4 months now. Such as rice, hamburger, opai, rice, poi, hot dogs, rice, rice, rice, and rice! We were all ecstatic to hear that news. He will be continuing the E-Stim therapy for 2 more weeks. After a month we will take him back to see Dr. Belafsky and if all is well then he will remove dad’s stomach tube. We are going to explore the possibility of dad having more physical therapy in one way or another.

We would like to again send our heartfelt aloha to everyone who has been there with us in thought, prayer, and deed. So many people, ohana and extended ohana, have done so much to help in dad’s recovery. Most of all we thank God for his grace, his providence, and his love for us all.

Check here for more pictures of dad and Gordon and friends.

Posted by Greg Helenihi Monday December 22, 2003

Well after 5 long months dad is finally home and very happy to be so. Its going to take us a few days to get everything like we want it. The move went smooth but the medicine order went to the wrong pharmacy so mom had to scramble to get dad enough meds till tomorrow. Dad sure did have some good company this weekend at the nursing home. Our brother Gordon Freitas came down to visit dad and jam with everyone. Many of the Mele Ohana ukulele group came by as well as Al Pauole, his fiancee Ann, and her son Scott. And to top it all off Babe and the Motu Nehenehe guys came by for a visit too. So many good friends have supported us all through this difficult time and we appreciate all of the thoughts and prayers that have been sent our way.

Posted by Greg Helenihi Friday December 19, 2003

Things are looking good for dad’s return home on Monday. Arrangements for the equipment and pharmacy needs have all been arranged for. His wheelchair has been ordered and a loaner obtained until it is ready. Transportation home is scheduled. Now dad has only the weekend to wait until he gets to come home. It has been 5 months now and we are very thankful to have dad as far along as he is in his recovery. Dad’s last few days at the nursing home will be busy though as he will be having a visit from Gordon Freitas on Saturday and early Sunday. Grandson Nathan will be down visiting as well. And some of the Motu Nehenehe dancers will be visiting on Sunday. So he will be entertained and have more people to ask “did you bring me a hamburger?”.

Posted by Greg Helenihi Tuesday December 16, 2003

Dad got another treat on Sunday when the Hui O Hawaii of San Diego choir came to Arbor Hills to visit and sing Christmas carols. Dad had a great time seeing many old friends and singing along with them as they performed. The Hui choir have been performing their Christmas program at many of the San Diego area nursing homes and convalescent centers this holiday season. What a wonderful way to spread the aloha spirit to so many people who need a lift from their sometimes tedious lives. Many thanks and much aloha to the members of the Hui choir for their thoughtful gift to dad and to all who see them perform.

Dad went back to Scripps for a followup visit and it looks like the doctor is going to go ahead and do the dilatation procecure. Dad is progressing but the doctor feels that it would benefit him. The doctor can’t do the surgery until about mid January though and we were hoping to have dad back home before then. We are still working with the Arbor Hills staff to get dad home as soon as it is possible. Dad wants to come home NOW and doesn’t want to hear reasons why he can’t do so now. We also feel that it is time for him to come home but there are things that we need to get and things to prepare before he can do so.

We may get a visit from our brother Gordon Freitas this week sometime as he is in Los Angeles right now helping Peter Apo to record some new music. It’ll be great to see him again and good for dad. I’ll be sure and get some pictures.

Posted by Greg Helenihi Friday December 5, 2003

Well today dad had an awesome treat. The Makaha Sons, who are in town to play a concert tomorrow night, payed dad a visit and played music for him as only they can. Being that the Sons are favorites of ours we were quite overwhelmed. Click here to see a few pictures of them. They played for about an hour or so with John playing ukulele and Moon and Jerry playing their guitars. Tula, Donna, Tony, Laurie, Auntie Junie, Aunty Patsy, and I all sat back and enjoyed the Sons playing hits such as Kamalani, Hopoe, and Ke Alaula to name a few. Thats how I would like to sound when I grow up heh. Donna danced a beautiful hula for dad to the song Hopoe. You can find out more about the Makaha Sons concert tomorrow night and about other wonderful events and concerts that Tula will bring to San Diego at: www.tulaproductions.com . I would like to send a heartfelt thank you to Tula for making this wonderful treat happen for dad, to Donna for being there and dancing for dad, and to the Makaha Sons, Moon, John, and Jerome, for taking the time to come out and give not only of their huge talent, but also of their gift of aloha. If you are unfamiliar with the Sons and their music you can learn more about them and their wonderful music at: www.makahasons.com . To all of you folks... Mahalo nui loa.

Dad has been doing very well at his E-Stim therapy sessions. He has gone from just a few bites and swallows in a session with difficulty clearing after each bite, to being able to finish a whole cup of his Italian Ice (his favorite flavor is cherry now) and be able to clear after each bite very well. The past few sessions he was even able to eat a cracker (crackers being more difficult to swallow because of their consistancy). He goes back to Scripps next week to have the doctor have another look at his swallow with a camera. The doctor will then decide if the dilatation procedure will be necessary. We are hoping that we will be able to bring dad home by Christmas but we aren’t sure if it will happen or not yet.

Posted by Greg Helenihi Thursday November 27, 2003

Well its early in the morning on Thanksgiving day. This year we have even more reason to be truly thankful. Not only is dad still with us, he continues to improve every day. Because dad will be unable to partake of a bounteous harvest this year, we will also wait until the time that he is again able to do so. We will be at the nursing home, listening to him remind us that he wants to eat more than anything. I will take him outside not only because he loves being outside, but because it keeps him from being inside where everyone is celebrating and talking about turkey and pumpkin pie. So everyone have a happy Thanksgiving. And be truly thankful for the simple things. You don’t really appreciate them until you can’t do them anymore.

Posted by Greg Helenihi Saturday November 22, 2003

Sorry I haven’t posted in so long. The frustration level is high and I keep putting it off. Although dad continues to improve, the progress is very slow and the road to recovery looks longer everyday. Dad wants to eat so badly that he doesn’t care why he is unable to or what could happen to him if it goes into his lungs. He keeps saying that he will sign a paper saying that he will take all responsibility if something goes wrong. Of course since mom and I are the ones with him all day, every day, we are the ones that have to sit there and listen to him accuse us of trying to starve him. He doesn’t care what caused his inability to eat or be at home. All he knows is that he wants food and to be at home and if we can’t make either one happen then its our fault and we aren’t helping him. Its going to be at a minimum of 2 to 4 more weeks before we can consider taking him home and every minute that he has to stay there will be extremely hard on all of us. Everyone who knows dad can attest to the fact that he never was one to accept excuses why something could not be done. That hasn’t changed and in this case is taken to extremes. Imagine not being able to eat for more than 4 months. Everyone you ask for food tells you the same thing: “not yet”. What doesn’t get said is not only “not yet” but “not any time soon”. It doesn’t get said but he knows it as well as we do. Add to that the fact that the rest of the patients at the nursing home do get to eat regularly. So there is food around off and on all day. The gentleman in the bed next to him can be troublesome to the staff sometimes so they placate him with snacks. If I have dad in the wheelchair its not a big deal because I can just take him somewhere else. If they are both in bed though that can be a problem because dad sees every little morsel that goes by and wants to know why he can’t have some too. We have spoken to the staff about it and they are trying to arrange for a different room mate. Preferably one with a feeding tube like dad. But until that happens it is torture for dad. Sometimes he complains about the late night nurses and we aren’t sure what his problem with them is. The only way to really know would be to stay there all night but I can’t see that happening because we are worn out just staying the times that we do. Everyone keeps telling mom and I that we have to take a few days off but I can’t see that happening. As long as he is there, we have to be there. I see all of these old people just sitting in their wheelchairs in the hallways most of the day. That is something that I will NOT let happen to dad. Like I said before, the road looks longer everyday.

One of the things the doctor from Scripps prescribed for dad was a patch that was to lower the amount of saliva in his mouth. I am still trying to find out what the medication in the patch was because we had to remove it. It was having some strange effects on dad to say the least. It took a few days for it to start lowering the amount of saliva in his mouth which it did do. However after about 3 or 4 days he started “seeing” things. He kept pointing and asking “who is that over there?” and no one would be there. Sometimes he would hold conversations with a bush or a flag pole that he thought was a person. Sometimes he would tell me “here hold this” and hand me an imaginary item. When he would try to sleep he would be extremely agitated and his whole body would twitch and spasm. It was like he was living out his dreams. Guess what he was dreaming about most of the time. Eating. He would bite and chew things in his sleep. However there were some unexpected positive effects as well. It was like all of his muscles gained strength. His voice was stronger, his arms and legs were stronger, and his swallowing was stronger. His first E-Stim treatment was while he had the patch on and boy was that one better than the ones where he didn’t have the patch on. We are trying to find out if its possible to use a lower dose or if there is an alternative medication because we do want the good things that the patch did but not the bad things.

The nursing home was able to arrange for someone to come in and give dad his E-Stim treatments. He had them everyday last week and they seem to be going pretty well. Becky, the therapist doing his treatments, is very good and really encourages him. Some days he does better than others mainly because it depends on if he slept well the night before. He doesn’t sleep well very often though. She has been having him swallow ice chips and he has done so fairly well. He got a treat today when Becky let me get him some Italian lemon ice for his treatment. He enjoyed it but he still wants more. Even after he is too tired to swallow effectively any more, he STILL asks for a sandwich. He will be doing the E-Stim treatments for at least another week or two. We are thinking that when he has gotten all of the benefit that he can out of the speech therapy, we will try to bring him home. We are getting the house ready for that now. The mother of a good friend of ours, Susan Pililaau, has a hospital bed that she is going to let dad use. We are going to bring it to the house this weekend. We still have to put in some wheelchair ramps and get the necessary equipment and consumables. The sooner he is able to come home the better for us all.

Posted by Greg Helenihi Thursday November 13, 2003

We saw the specialist on Tuesday. Dad got to get out of the nursing home and break the monotony. The specialist did an endoscopy (put a camera and light down dad’s throat) and had him try and swallow some applesauce with green dye in it. He recommended that dad have several E-Stim treatments before he tries the Esophageal Dilatation (stretching of the esophagus). The E-Stim treatments are a fairly new procedure where they use electrical stimulation to trigger the swallowing muscles. How and when this will all happen hasn’t been decided yet. We still need to find out what the insurance will pay for and what they won’t. Mom said that she would just pay for the E-Stim treatments if he needs them. One thing they may try to do if he starts getting the E-Stim treatments is to stop his other speech therapy and we think it is absolutely necessary for him to continue doing that. Like I said we still need to iron out the details.

Dad is still irritable and is being rude to alot of the staff. He tells them “you aren’t helping me” or “you don’t know what you are doing”. I think he thinks that if he irritates them enough that they will send him home. He had a nice visit yesterday with Aunty Priscilla and cousin Pam. Pam showed him alot of pictures and told him about her experience at the NAPALI leadership training course in Hawaii where she got to ride the Hokule’a.

Posted by Greg Helenihi Friday November 7, 2003

Dad did really well for his therapy sessions today (although he doesn’t seem to think so). Better movement and more strength. He had a little tomato soup too which he enjoyed (he still wants a sandwich though). A wheelchair specialist came by and took his measurements yesterday for the chair he will get when he goes home. We have been trying to find out which type of seat pad would work best for him. He got to test out a really expensive one (about $600 worth) on Wednesday and although it was better than what he was using he still complained that it hurt his backside. The wheelchair rep let him test out a new demo pad for the weekend. He seemed to like that one more. He had a really nice visit with Heather Minton, and Bob and Hope Kihune. I think he had more fun today than he has for a long time. That doesn’t mean that he didn’t still want to eat a sandwich and go directly home though. I put a few pictures of his visit on the picture page. Hope brought him a fluffy bunny to keep him company. That made a good picture. I haven’t seen him smile so much in months. He is scheduled to go next Tuesday to see a specialist about having the procedure done to help him swallow. That would be so wonderful if it did work.

Posted by Greg Helenihi Monday November 3, 2003

We spoke with dad’s speech therapist about the swallow test that he did on Friday. She explained the technical details of the report. Most of the information in the report dealt with things that we already knew like his inability to control the contents of his mouth properly. The dysfunction of the sphincter in his lower esophagus is causing a large portion of the problem because it is keeping the food from getting clear of the esophagus. There is a procedure that could help to correct this situation and they are exploring the possibility of using it to help dad. It is supposed to stretch the opening and make it easier to open.  One of the recommendations from the therapist who did the swallow test was for dad’s speech therapist to use small amounts of nectar thick liquids during his therapy. So dad got to have some thickened orange juice today. Boy did he love that. He did very well at it and we are pretty sure that it all went down into his stomach. They verify that none of it went into his lungs by taking his temperature after about an hour. If any had gotten into his lungs and started an infection it would have raised his temperature. That was an unexpected treat for sure. We also spoke with the occupational therapist about things that we would need to get and do for when dad gets to come home. Dad kind of liked that too because it had to do with him going home. I think he was almost thinking sometimes that we were going to make him stay in the nursing home. So dad got several pleasant surprises today.

Posted by Greg Helenihi Friday October 31, 2003

Well dad had his swallow test done today and we at least have an idea of what is happening. They let me go into the testing room while they did it and I was able to see exactly what happened when dad swallowed some pudding. His swallows actually did pretty good up to a point. It seems that the lower esophogeal(sp?) sphincter (which is the doorway to the stomach) isn’t opening properly. His swallows would do fine until they hit that point where they would stop. So on the next swallow part of the material which didn’t get swallowed the previous time would come back out. This is why he has been unable to fully control his secretions. When he swallows its not all going into the stomach. Over all for him this isn’t great news because he wants to eat NOW. However according to the speech therapist who did the test it is possible to correct the problem with therapy. When we got back to the nursing home I spoke with dad’s speech therapist who seemed to think that it went fairly well. She told us not to take the test as a “pass-or-fail”, but rather as a means to see what is going on in there when he swallows.

Posted by Greg Helenihi Wednesday October 29, 2003

Just a quick update because I haven’t posted in almost a week. Things have been very tense (read pretty darn scary) around San Diego the past few days because of the massive wildfires that have ravaged the county. I’ve have never seen anything of this magnitude happen in San Diego before.  Today has been the first day since last Friday that we have seen sunlight and the beautiful blue sky. The air quality is still considered bad though and I only took dad outside for a short while. He has been wanting to go outside everyday but I have had to tell him that its too dangerous for his health. So we have been sitting inside looking out at the depressing site of a smoke and ash. Luckily our house and the nursing home where dad is at was never in any danger. Clint Jr. and his girlfriend had to evacuate for a day or so when flames were approaching their neighborhood but with luck and the hard work of the fire crews they got to go back home. A completely different fire threatened Escondido where Nathan lives but they are okay now too. Seeing so many people in these tragic circumstances makes us appreciate the blessings that God has bestowed upon us all the more. Dad continues to improve in all ways but also continues to find ways to get something to eat and to go home. The swallow study has been ordered but still waits upon the availability of ambulance transport (due to the fires). The speech therapist told me the other day that I could get dad some sugar-free lollipops. A very large concession on her part but she thought that he deserved some kind of reward for all of his hard work. So now at least he can get some taste in his mouth (he likes cherry the best so far).

Posted by Greg Helenihi Friday October 24, 2003

Dad continues to slowly improve in all areas. A little more range of motion, a little more strength, a little clearer speech, a little less suctioning needed. He has been without the foley catheter for about a week or so that seems to be fine. So things get better daily but slowly. He is also getting better at trying to get us to take him home and give him something to eat. He has developed a plan in his mind and we hear parts of it throughout the day. First I will go get the van and bring it to the front of the facility. He will wait for me there. Then he will stand up and get in the front seat. We then proceed to go home but stopping first at Jack-in-the-Box to get him something to eat. Once home he will eat and watch tv in his own chair and on his own tv with cable. In his mind all of this is doable right now. Outside of his mind he can’t stand up, he can’t have anything to eat, and the nursing home doesn’t have cable tv. Today he was offering to pay random people for a loaf of bread. One thing that the speech therapist did was offer to ask the doctor to order a swallow study done. This will give a clearer picture of his ability to swallow. He still isn’t able to completely control his saliva through swallowing but she wants to see what the study shows. She is really going out of her way for dad. The other day I was out in front of the nursing home with dad and it was hot so he had me take his shirt off for him. He had his cd player playing the Kamehameha Schools song contest through his headphones. So there we were sitting out front with dad leaning back in his wheelchair, no shirt on, tapping his foot and singing Sons of Hawai’i as loud as he could off key. I had to smile.

Posted by Greg Helenihi Monday October 20, 2003

Well I haven’t posted in awhile because i’ve been too tired to bring myself to do it. Dad’s therapy is progressing pretty well. His desperation to eat and go home have reached new heights though. And even though I know I would do the same thing in his place, his constant mantra to do so is starting to wear on me and mom as well. He has taken to chanting “gotta eat” or “need to eat” or “ i’m so hungry” or “take me to the cafeteria” over and over if he is thinking about his hunger. If he is thinking about going home then he chants “go get the van” or “bring the van” or “wheres the car parked?” or “i’m going to stand up” or he just drones “come on, lets go, come on”. We feel so bad that we have to be the ones to tell him that he can’t eat OR go home yet. Today I was having him work on walking himself forward in his wheelchair (one of his physical therapy exercises) and I got distracted. When I turned around he had fallen out of the chair. I think he had tried to lean forward and see if he could stand. He went down slowly and doesn’t seem to have taken any harm. He spends so much time thinking about going home that he has convinced himself that he just might be able to stand (which is not even close to happening yet). He is also convinced that he would be able to eat and not have any of it go into his lungs. Unfortunately the speech therapist and the doctor are the only ones who can allow him to take the swallow test that will allow him to begin eating. Since we are the ones who must continue to tell him that he can’t do the things that he wants to do so bad, he argues that we aren’t trying to help him or that we are trying to keep him there. That is very difficult to have him say things like that when we have spent the last three months only trying to help him to get better. I’m still glad that he has the power of speech at all.

Posted by Greg Helenihi Thursday October 16, 2003

Dad is making slow and steady improvements daily in all of his therapy sessions. He is ornery and kind of mad at the situation but I would rather have him mad and feisty than unable to move. He talked a little bit with brother Gordon in Hawaii and that made him feel good. The first thing he does when he wakes up now is to ask the nurse for a phone to call us.

Posted by Greg Helenihi Tuesday October 14, 2003

Well dad spent most of the day yesterday trying to get us to take him home. He didn’t want to hear any reasons why we couldn’t yet. Every 5 or 10 minutes he would ask where the car was parked and then to take him over to it. He was very determined to go home. It was very trying for all of us. Mom didn’t leave the hospital until about 11:30pm because he wouldn’t go to sleep and wouldn’t let her leave without him. When she would tell him to go to sleep (he was exhausted) he would say “it ain’t gonna happen”. Eventually she got away and came home very tired. I know he didn’t get much sleep last night because he was tired most of the day today. He slept through his shower this morning and dosed off in his wheelchair throughout the day. One highlight was his speech therapy session where he did great. He had more volume in his voice and his throat muscles are gaining strength. His speech therapist knew the damage that his stroke did and how difficult it is to recover from such a devastating stroke. She told him that he had the strongest will and perseverance of any patient she had ever worked with to be able to make the progress that he has so far. Dad also got a haircut today which he has been wanting to get for a long time. I got a few pictures of him before and after and put them on the picture page.

Posted by Greg Helenihi Sunday October 12, 2003

Dad had a nice outing today. Mark and some of the ukulele class and came by and played for him for awhile before heading to their normal weekly gathering.  We played out in front and a few of the residents and their families came by to watch for awhile. It was a good time and dad enjoyed it alot. When they left to go meet the rest of the class he wanted to go with them of course. He is trying to talk alot more now. It is hard to understand sometimes but he is getting better. He was singing along with me this morning to Pupuhinuhinu and Lei Nani. Mom and I have gotten to the point of being able to get him all cleaned up and dressed and I can even get him into his wheelchair myself now if I have a slideboard. We want to be able to do whatever would be necessary if we were to bring him home any time soon. I have put a few more pictures up on his picture page.

Posted by Greg Helenihi Friday October 10, 2003

Today was dad’s strongest day so far. They took him for a shower this morning and then he had physical therapy which he did great at. They had him stand up several times and although he needed alot of help to do it, he was helping all he could. Its getting to the point of him needing to build up the muscle mass that he has lost in the past 2 to 3 months. After that we went outside on the front patio and I played him some slack key for awhile. I try to keep him outside during lunch because he can’t eat yet and its torture enough for him to not be able to eat. I don’t want him to have to watch while others eat and he can’t. He wants to eat so badly that he keeps motioning that he wants to eat and pointing at the food cart. He wants us to give him food even after we tell him that it could go down his lungs and send him back to the hospital. Honestly, the hardest thing for us right now is to keep telling him that he can’t eat yet. Dad had his speech therapy a little later. Speaking is still one of the hardest things for him but with the help of Melody, the speech therapist, he is improving. We can’t say enough about Melody. She is outstanding at what she does.

Posted by Greg Helenihi Wednesday October 8, 2003

Well dad has been wanting to get up in the wheelchair and workout for the past two days. He got his wish today and he did great. His strength continues to increase. His trunk control and balance were definately better today. I walked him around for awhile in his wheelchair before returning him to his room for a session of speech therapy which went well. He still persists in telling us that he wants to eat and also wants to go home daily. All we can tell him for now is why he can’t do either of those things and that he should be able to soon. There are a few more pictures of him doing therapy on his picture page.

Posted by Greg Helenihi Tuesday October 7, 2003

They took dad for his first shower since he had his stroke today. They had to use a Hoyer lift and a sling to put him on this big gurney made out of pvc. Needless to say he was glad to be clean. He was quite awake and aware today. They did his physical therapy in bed. They sat him up on the side of the bed and worked on his balance and eye-hand coordination. Later on he did his speech therapy and worked on a few necked exercises and a few speech exercises. I’ve put some pictures of him doing speech therapy on his picture page. He still wants to eat something and still wants to go home.

Posted by Greg Helenihi Monday October 6, 2003

Well parking was really bad this morning. Most of the Arbor Hills parking lot was being resurfaced and all nearby street parking had been taken. To make it worse the mini-mall next door had a different company resurfacing their parking lot as well. I ended up having to park on Baltimore. Dad had some pretty good therapy sessions this morning. Thomas from physical therapy and Ellen from occupational therapy worked with him for about an hour or so. They worked on his arm and leg strength and range of motion. Having seen his progress from day one I assured them that he is definately gaining strength and moving much better than he was at Kindred. His shoulder strength was noticably better. His session with the speech therapist Melody went exceptionally well. She had him doing some exercises to strengthen the neck/throat muscles necessary for speech. He CAN talk it is just very difficult for him right now. She even gave him homework. If someone asks him a question where he can answer yes, no, or maybe, he is to say the words and not just nod his head. As his strength increases, so does his stubbornness. He is starting to insist on things. Today we took him some clothes to wear when he does his therapy. Well before we left to go get some lunch he started pulling off his gown. I put it back on him and we left. When we got back the nurse said that he insisted on pulling his gown all the way off so they closed his curtain. Well sure enough when we got in there he was laying there with his gown balled up next to him. We asked him what he wanted and he pointed at the closet. Turns out he was intent on putting his clothes on and getting out of bed. I hate being the one to tell him that he can’t do something but I find myself having to do that more and more now. “You can’t eat yet it might go into your lungs” or “you can’t get out of bed yet you aren’t strong enough”. I’m just hoping that his progress is fast because pretty soon we won’t be able to stop him from trying to get up on his own.

Posted by Greg Helenihi Sunday October 5, 2003

Dad did pretty good this weekend. His stomach is a little better and we’re trying to keep his congestion down with suction. He was in the wheelchair on Saturday but not Sunday. They are supposed to start the real therapy sessions tomorrow. He still wants to go home badly and also wants something to eat badly. Unfortunately we can’t let him do either one yet. When the meal carts go by the door he points at them. Mom is having a hard time leaving him at night because he won’t go to sleep and won’t let her leave. I think he just wants it to go away and be like it was before the stroke happened. Hopefully that will turn into motivation to work even harder and get out of there faster. I put a few more pictures on his picture page.

Posted by Greg Helenihi Friday October 3, 2003

Today was pretty good for dad. His stomach is still giving him some problems and he still has some congestion. We are trying to keep him suctioned and they have been giving him something for his stomach. Today he had evaluations from the physical, occupational, and speech therapists at Arbor Hills. The speech therapist came first and I was very pleased with her knowledge and manner. She tested him on a few things and gave us some exercises to work him with. Then physical therapy came and tested a few things and then they put him in a regular wheelchair. I think he liked the wheelchair because he was in it for about three hours (the longest he has been out of bed so far). Clint Jr. and Uncle Harrison were there and we wheeled him around the place off and on for the next three hours. While he was in the wheelchair the occupational therapist came by and did her eval on him. They will all start him on daily workouts tomorrow. They were all pleased at what they saw and were very positive.

Posted by Greg Helenihi Thursday October 2, 2003

Well dad is moved over to Arbor Hills Nursing Center. He is in room 15. The best way is to go 8east and take Fletcher Parkway off. Then turn left on Baltimore and immediately turn left again on Parkway Drive. its the second driveway on the right I think. You will see the sign. Parking seems to be kind of short (even with the parking in back). We will probably be going through the same fights that we did at Kindred early on. So far they seem to have nice people on staff which is typically shorthanded. We will scream the house down to get him what he needs though. As soon as it is possible we will be bringing him home though. He wants that more than anything. He still has the congestion and he is having some pain in his stomach. It took a little while but he has everything in his room that he needs now. They didn’t put him on oxygen off the bat (even though he has been on oxygen constantly since he had the stroke). They said only if he needed it and so far he has been okay without it. He has a roommate so its kind of close quarters. Like I said, we will do whatever it takes to get him the care he needs. We will see if they can handle him and help him to get better. If not we will explore other options.

Posted by Greg Helenihi Wednesday October 1, 2003

Dad still has some congestion but were workin on it. Not only did he do his therapy workout today but when they put him in the chair he wanted me to help him workout some more. He started grabbing and moving his pillows so I helped him. I thought he was trying to get out of the chair but instead he had me grab his arm and help him workout more. We did both arms several times and a little on his legs. Then he had me grab both of his hands and had me help him to try and do some chair situps. I was amazed. Whatever it takes to get better and go home, he is going to do it. I’ve put up a few more pictures of dad and a few of us at the Pacific Islander Festival. Well one of us and one of the Motu Nehenehe dancers.

Well we were told today that tomorrow is the day that he is going to be moved to a nursing home. He is being moved to Arbor Hills Nursing Center. It is located at 7800 Parkway Drive LA MESA, CA. 91942. Phone number is (619)460-2330. It is close to Baltimore and Fletcher Parkway.

Posted by Greg Helenihi Tuesday September 30, 2003

Another long wait. Ack. I should be updating more regularly now though. Our performance at the Pacific Islander Festival went quite well and the Motu Nehenehe dancers who we played for can be very proud of theirs as well. Their show was a great presentation of traditional cultural dances and music. Congratulations also to our brothers and sisters in the LeiIsa group (THE best Tahitian drummers in southern California). They performed for Kaleo Onalani on Saturday and for Lokelani on Sunday. I highly recommend seeing them perform. Awesome.

I was a little disappointed that a great portion of the entertainment was not what I would consider “traditional pacific islander”. There were quite a few groups who did superb traditional performances. However there were alot of performances which were good, but I didn’t feel belonged at that festival. Just because a pacific islander dances a polka, doesn’t make it a pacific islander dance (i’m trying not to name names here). For the festival organizers... sorry but thats how I feel about it. Alot of people disagreed with me though and enjoyed it thoroughly.

Dad has had a bit of congestion the past few days. We are trying to keep it clear and make it go away. Dad had lots of visitors this weekend and that helps to perk him up. Physical therapy is still working with him and trying to increase his strength. They actually had him try to stand a little yesterday. He was about half way up but thats a great start and great news. He has been having some pain in his stomach and they are giving him medicine for it. He has been staying awake for most of the day lately and has his eyes open alot. The past two days when we have gone to leave for the night he has been shaking his head no. He didn’t want us to leave him. We stayed for awhile longer, usually until he goes to sleep. We finally found out that its not that he doesn’t want us to leave, its that he wants us to take him with us. He wants to go home. We have to tell him that he still needs critical care and encourage him that he is getting better and will soon be able to go home with us. Its hard to leave though when he doesn’t want us to leave without him. I’m sure he is bored too though. We are trying to think of some things that we can have him do to take away some of the boredom. Well I have to head over to the hospital now but I will try to post some more pictures later tonight.

Posted by Greg Helenihi Saturday September 27, 2003

Sorry for the long wait for an update. Its been a little busy. We have been preparing for a performance at the Pacific Islander Festival on Sunday the 28th. Dad has been doing pretty good since Wednesday. He is gaining strength slowly but surely. Yesterday they replaced the feeding tube in his stomach because the one that they originally put in was very small for some reason and kept getting occluded (clogged). Even the nurses with the strongest hands would have a very difficult time trying to open it back up and this was quite often. I can attest to this because I tried to do it several times myself. So finally one of the doctors agreed and replaced the tube with a larger one. This can also get clogged but not nearly as often and it will be much easier to clear. Another reason that this needed to be done was that dad will probably will be moved next week to a skilled nursing facility and they would have to send him back to a hospital to have the tube replaced. I have put a few more pictures of dad doing his daily therapy on the picture page.

Posted by Greg Helenihi Wednesday September 24, 2003

Another good day for dad in therapy. He is getting a little stronger each day. I got some pictures of him while doing therapy today. He did great. He was able to mouth and whisper a few words today. Still working on the vocal cords. Overall very good day for him. Theres a good possibility that they will move him next week. I will inform when I know for sure.

Posted by Greg Helenihi Monday September 22, 2003

I’ve added another page with some pictures of dad in the hospital. There are just a few on there now but I will be adding some every now and then so keep checking back. Just click the link above to get to the picture page. Dad has been having quite alot of congestion but it seems to be getting better. He did good at his therapy today. Mark Aquino came by tonight and we played some good Hawaiian music for dad. A good friend of dad from his Navy days, Capt. Buck Buchannon, came by for a visit too so dad was pretty busy today.

Posted by Greg Helenihi Saturday-September 20, 2003

It seems that nobody was feeling well today. I wasn’t feeling well and had cold symptoms. Mom wasn’t feeling well with an upset stomach. And dad wasn’t feeling too well either. He has had more congestion in the past few days. We are hoping that it won’t lead to anything more serious again. Need to keep him well so he can continue to gain strength. Because I wasn’t well I couldn’t go to the L&L thing today. Bruddah Mark Aquino went down but it was so busy and the place was so small that he ended up not playing. Maybe we will some other time. Thanks Mark for going down and sorry I wasn’t able to be there. Dad’s grandson Nathan was able to visit him today and that always makes him happy. Hopefully everyone will get better soon and we can get dad working on his therapy again.

Posted by Greg Helenihi Thursday-September 18, 2003

Dad did great for his therapy again today. The past week has been so great for him and us. He is still having such a hard time but at the same time he is doing things that I was kind of unsure if he would ever do again. The only thing I can think to equate how much effort he is putting into it would be if you were to walk across the Sahara desert until you are half dead and then try to run a marathon or lift a car over your head. He does everything they ask of him. Today they had him work with a small set of bicycle type pedals attached to a mini frame that sets on the table. He grabbed a pedal in each hand and gave it his all to turn them. With a little help he did about 20 or 30 reps. He is amazing us just about everyday. If there was any doubt as to the state of his faculties he put that to rest yesterday. I had been wondering where his laptop was. I was thinking of using it to show him some slideshows and dvds. Well I knew it wasn't in his regular laptop case. I was sitting there at the foot of his bed and I thought to myself “hey, ask him”. So I asked him if his laptop was in Hawaii and he shook his head no. I asked if it was in Washington and again he said no. Mom then asked him if it was in San Diego and he nodded yes. She asked if it was at the house and again he nodded yes. She asked him if it was by his desk and he shrugged his shoulders like he didn't know. So that night I went looking and I found it in a different laptop case next to his laser printer. Also today after he had rested a few hours from his physical therapy workout he opened his eyes up and was watching some tv for awhile. He is usually wiped out until the next day.

Posted by Greg Helenihi Wednesday-September 17, 2003

Dad was pretty tired today but still did good in his therapy. Aunty Leimomi and Uncle Milton Wise visted him for awhile and he enjoyed that. They got him to smile and that was good to see. Also Clint Jr. was able to see him do his therapy and that encouraged him alot. He still tires very easily but the physical therapists say that he will tire easily for some time to come. They say that he will gain strength slowly but surely.

There is still a possibility that he may be moved soon. I will let everyone know as soon as we do. We really like the therapists that are working with dad now and would prefer that they continue with him but neither they nor we have a choice in the matter. Ann, the social worker for Kindred, was explaining to mom that just recently they had some federal rule imposed on them that dictates how long a patient can stay at a particular type of facility. A federal rule no doubt obtained by HMO lobbyists looking to save them money. Every time I see or hear about these rules that seek to minimize HMO costs at the expense of proper medical care (especially for my father) it infuriates me. When your loved one is the one being denied care that they SHOULD be getting to save a buck it makes me want to put the ones responsible in the same situation that my dad is in and see how THEY like it. “Oh sorry you are now medically fit and have to be moved out”.

Posted by Greg Helenihi Tuesday-September 16, 2003

Another good day for dad in his therapy. They are really good at making him work hard but not beyond his abilities at the time. It seems to be taking him less time to recover now. Very encouraging. I am now hoping that speech therapy will be able to get him to start swallowing and trying to talk again. These goals may be further down the road but at least he is now well started on his “climb up the mountain”. Jack Knight came by again today and we played him some ukulele tunes. Theres a new L&L up by San Diego State and we might go play some music for them at their grand opening on Saturday. Jack couldn’t wait that long and went to play some today. I can’t wait for the day that dad can swallow and eat regular food again. I think he has been wanting to eat since the day he had the stroke. I remember him saying that he was hungry then. Gonna have to have some fish & poi ready for him.

Posted by Greg Helenihi Monday-September 15, 2003

Dad did so good for his physical therapy today. It literally exhausted him but we were all so happy and encouraged. He did everything they asked him to do and then some. They had him moving his arms, legs, hands, and feet. It was hard for him to hold his head up but if we asked him he would lift it back up. They had him kind of doing reps moving his feet and hands and he did great. One of the therapists named Stephanie put a wet wash cloth on his his and asked him to take it off of his head. She had to help him just a little but he did it with his left AND right hand. The most encouraging thing to me was when she put the wash cloth in his hand and held his elbow up for him a litte, he actually was washing his face off with it! That made me so happy to see that. I could tell that he had wanted to do that for such a long time. He brushed his own hair with a little bit of help too. Today the physical therapists also brought the occupational therapist with them as well. She was also encouraged by what she saw and will start working with him tomorrow. We could all tell that he had more strength today. The session did wear him out though. We will see how he does tomorrow. I’m curious to see how long it takes to gain his strength back. It took a few days last time. Hopefully with work the recovery time will become shorter and shorter. He had his eyes open for a pretty long time today too. Over all another very good day for him.

Posted by Greg Helenihi Saturday-September 13, 2003

Dad has been kind of tired the past two days but still responds well and is opening his eyes more. Physical therapy has been working with him a little every day and we have also. He loves his talk story e-mail time. Mahalo again to everyone who has sent one. Dad had lots of visitors today. First Uncle Bobby Ohumukini visited for a bit after he came from a gig which he and Aunty Maelani did. It was for a nursing home which dad played for last year. They were able to keep the Hawaiian music going this year too and it was well appreciated. Thanks Aunty Maelani and Uncle Bobby. In the afternoon dad was visited by some of the committee members and fellows from NAPALI (The National Pacific American Leadership Institute) which dad has been very active in. They were in town for one of their meetings and they were able to stop by for a visit with dad to let him know how the program is going. Although he was kind of tired, he enjoyed their visit and was able to open his eyes for them and nod a few answers. Mahalo Uncle Al, Ryder, Kamryn, Keali’i, and Moana for the visit. It gives him good incentive to continue to work hard at recovering. In the evening some very good friends of mine, Boysie and Liz Condes, had a short visit with him (after a bit of run around because I had forgotten to tell them that he had been moved... sorry guys). Its possible that he had other visitors when we weren’t there. If you do visit and we aren’t there and would like to let me know, please drop me an e-mail. It’ll be good to know how he did and if he responded well.

Posted by Greg Helenihi Thursday-September 11, 2003

Some good news today and some not so good. First the not so good. We continue to have issues with some of the nursing staff and are having to become unpleasant to get some things rectified. Dad still has the C-diff infection but so far it hasn’t been too draining for dad (like the staph infection did). Over the past week or two there have been some problems with dad’s feeding tube and with his PICC line. Where the feeding tube goes into his stomach has become very irritated (red and puffy). Mom has tried to get them to do something about it but always gets the placating “you don’t know what the hell you’re talking about” attitude from nurses as well as doctors. Well after it got bad enough they finally changed to the “hmm... maybe theres something wrong with his feeding tube” attitude (arrived at from their own observations and not hers of course). Anyway they finally started cleaning it out and putting antibiotic cream on it (sometimes). One of the ends on his PICC line continues to break off. After several go rounds with the nurses mom got them to tape it off and secure it to his arm so it won’t flop around and break again. One of the major problems over the past few weeks was that dad has had diarrhea and mom was constantly trying to chase them down to clean him up so he won’t be laying in it for long periods of time. Lets start this story from the beginning. A few weeks ago there was a period of three days where they didn’t see any bowel movements at all. So they started giving him laxatives. Well after a few days they started to work. A few more days and they worked REALLY good. Needless to say cleaning up after that is not on the nursing staff list of favorite things to do. Well after a few days of this increased output it was pretty much like diarrhea. It was messy and he was going often. Being there of course we noticed it too. After a week or so of this it wasn’t getting better it was getting worse. One night we happened to find out that they were STILL giving him two laxatives even though he obviously didn’t need them anymore. The nurse that night said she wouldn’t give him the laxative that night and that she would make a note that he shouldn’t get anymore laxatives. Well it still didn’t get better. Several days after that we found out that not only were they NOT giving him Immodium to stop the diarrhea, they were STILL giving him the laxatives! So they apologised and said that they would discontinue the laxatives and notify the doctor so that they could give him Immodium. Well after the incidents of the past few days mom complained and they sent the head nurse or something like that to come talk to us today. Mom told her story. She made notes and said she would go check on what was in the computer as far as what medicines he was ordered to get. She came back after about 10 minutes and guess what? They were STILL giving him laxatives!!! So... she apologised and said that it was being corrected and that he was going to get his Immodium. Now... when we go in tomorrow guess what is going to be on our list of questions? Did they indeed stop giving him laxatives and did he get his Immodium? This has been going on for at least two weeks.

Okay enough of the not so good. Now for the good. Even with all of the mess ups and other bad stuff going on the past few weeks. I’d have to say that today was his absolute BEST day since he had the stroke. Please understand that i’m not saying that he was jumping up and running races. But today his movement was the best i’ve seen so far. Almost ALL of his movements so far have been very slow and slight. Just to move a finger a millimeter would take colossal effort on his part. Well today His movements were, for lack of a better term, more natural. He just seemed to have more strength. And for a longer time too. His eyes were open more and we definately saw him move his eyes which he hasn’t done so far. He opened his eyes and actually was looking at me when I read him his “talk story e-mails”. By the way thanks so much to all who have sent him a “talk story” e-mail. He REALLY enjoys them alot. Keep them coming please! The physical therapists (who are wonderful by the way) are very encouraged by what they have seen in the past few days. The speech therapists are also much more optimistic. They actually got him to try and say a few words yesterday. He said hello and aloha. Also, I was speaking to the gentleman in the room across from dad and he said that he could swear that he heard him saying something a few mornings ago. He couldn’t tell what it was, but he heard him saying something. We all understand that the stroke that dad had was a massive one and also know that the worst case scenario in this type of stroke is potentially very bad. But we have faith in God that he can do all things and that HE will decide the outcome. Also anyone that has ever known dad KNOWS that he is fighting with everything hes got. Anyway today we all felt much better and I know dad did too. I think he knows he did good today and that will make him fight all the harder.

Posted by Greg Helenihi Tuesday-September 9, 2003

Dad seemed to have more congestion today. Hopefully it will subside tomorrow. He is still moving more and opening his eyes for us. Its encouraging to see him trying to do more.

I have a favor to ask of all friends and family that visit this website. Today I read dad an e-mail message from our brother Gordon Freitas in Hawaii. It was a “talk story” e-mail message saying what he has been doing and things that have been going on (dad and Gordon would talk story on the phone almost every day). Well when I read him that message he loved it! He nodded his head often and had his eyes open for most of it. What I would ask you to do is to send dad some “talk story” e-mails (through my e-mail address). Anything at all that you think he might like to hear about. I will read them to dad every day.

Posted by Greg Helenihi Monday-September 8, 2003

Sorry there were no posts this weekend. It was long and tiring for me. Dad was moved to a different room in Kindred  Hospital today. It seems he has another type of contagious infection called C-differential or something like that. They say that the antibiotic that was used to get rid of the MRSA staph infection also got rid of some “good” bacteria and thats how he got this new one. In any case they didn’t want his roommate to get it as well so they moved him to a private room. He has been doing relatively well as far as opening his eyes and moving his hands and feet. Relatively well meaning not alot, but considerably more than when the pneumonia had taken all of his strength away. The physical therapy crew has been taking him for his outside time everyday and he enjoys that (he nods his head that he does). His new room number is 411 and it is at the far end of the south wing.

Saturday Clint Jr. and I played for the Motu Nehenehe Annual Luau and fundraiser (they are raising funds for a trip to Tahiti where they have been asked to perform). It was a great success. Congratulations to Babe and everyone in Motu Nehenehe for a job well done. Also many thanks to the Mele Ohana ukulele group for a great performance and to braddah Mark Aquino for his sweet rendition of some old classics.

Posted by Greg Helenihi Friday-September 5, 2003

Dad is having some good days and some not so good. He didn’t feel too good yesterday. He had alot of congestion and rattling in his throat. Today it was better. Its been up and down with the nursing staff as well. Some of them are just wonderful but some just aren’t doing some things for him the NEED to be done. Mom had a fit tonight when she went back down there and they hadn’t turned him (he needs to be turned every two hours because of his pneumonia) for at least four and a half hours. They hadn’t cleaned him up. And this morning we found one of the leads to his PICC line broken off and open. THIS is why mom is so tired and afraid to leave him alone. We intend to let some higher ups know how we feel about it. We still fear greatly for him. He can’t let anyone know how he is feeling or if something needs to be done. He is trying so hard. He opens his eyes for us and nods answers. He squeezes our hands. But all of that takes so much effort for him. Its bad enough that he is in the condition that he is. Add to that the fact that his care is sometimes questionable and you might be able to imagine how we feel right now. Afraid, angry, and frustrated.

Posted by Greg Helenihi Wednesday-September 3, 2003

Still no word on dad getting moved today. His status is about the same today. Slowly getting over the pneumonia (its mostly gone now) and trying to get him awake and moving. We took him for his daily trip outside and played him some Hawaiian music. Yesterday our good friend Mark Aquino came with me and we played dad some nice Gabby and Sunday Manoa tunes. I met Mark at one of the Mele Ohana ukulele practices and we have been having a good time jamming Hawaiian music. Anyway dad enjoyed the music. Thanks again braddah Mark! With the Mele Ohana group, Mark, and Clint Jr. and I playing music for him, he definately will have motivation to get well just to be able to play again.

Posted by Greg Helenihi Tuesday-September 2, 2003

Sunday and Monday were pretty much uneventful so I took a break from posting. Theres a good possibility that dad will be moved to a nursing home this week sometime. I will let you all know when I know anything. The pneumonia is getting better. Now we need to work on getting him to open his eyes more and moving around more. But most of all we need him to start waking up more. Most of his time is still spent in a sleep state. Even when moving or when his eyes are open its as if he is still asleep. How do you retrain your brain to wake up again? Thats going to be the most important thing in his recovery I think.

Posted by Greg Helenihi Saturday-August 30, 2003

We visited a few more skilled nursing facilities today. Nice looking facilities. We are hoping that whichever one he goes to is able to give him the care he needs. The only experience that we have had with a nursing home is when grandma was in one last year and that was for a very short time (and ended for us badly). So naturally we have fears about dad being transferred to one in the condition that he is in. Our experiences with the hospitals that dad has been in has reinforced our fears and in some situations, created new ones. It does prove that no matter how good the hospital’s reputation is, quality of the care you get depends on the nurses on duty. Some are diligent to the tiniest detail. Some won’t do things unless you scream your head off. To be fair to them you must consider that they are all working under the “more for less” principle. More patients/work and less nurses to do it. The hospital administrators are the ones who determine these things, not the families of those being cared for (or there would be someone in dad’s room 24/7). There are times when we are afraid to leave him and go home because we think that when we leave something will happen and noone will be there to help him. Mom is about worn out from this fact alone. In any case we feel less than good about the whole situation.

Dad had his eyes open for a little while today. He didn’t move too much though. I was trying to do some work on the bathroom renovations at home so I went to the hospital a little later and played him some ukulele. Everyone please continue to remember dad in your prayers.

Posted by Greg Helenihi Friday-August 29, 2003

We went this morning to look at a few of the skilled nursing facilities. One was kind of older looking and really busy and crowded; one was newer, not nearly as busy and very nice; and the last one was kind of in between. Of course the new nice one is going to be the hardest one to get into i’m sure.

We took dad on his daily outing again. I’m sure he likes getting to go outside and listen to music. It tires him because he does tire easily but its good for him. He was breathing a little better today. Dad’s brother Harrison got him to squeeze his hand a few times. He is still responding to us pretty good and had his eyes open for awhile.

Much Aloha to Temper Kanakanamu Freitas (brother Gordon Frietas’ way cool dog and best buddy) who is now chasing all the other dogs around in heaven.

Posted by Greg Helenihi Thursday-August 28,2003

We took dad outside again today and played him some music. He is still moving around but not quite as much as yesterday. He still has some rattling in his chest but the doctor said that he would for awhile yet.

Posted by Greg Helenihi Wednesday-August 27, 2003

Dad had considerably more activity today than he has since he got the staph infection. His eyes were open more and he was moving his arms and legs alot more. The nurses even said that he was moving around this morning and one said he had lifted his left arm up. The physical therapists put dad in his therapy chair and we took him outside for about an hour and played him some music. I felt much better seeing him moving around so much. We all saw him try to lean forward in his chair as if he was trying to get up. He is definately fighting from the inside. Once he is able to get some strength back I hope he will improve faster. I still think that the infection/pneumonia and the strong antibiotic they gave him to fight it had sapped what little strength he had left. Its hard to see no reaction for days on end. Lets all hope and pray that he is on the road to strength and recovery now.

Posted by Greg Helenihi Tuesday-August 26, 2003

You’ll notice that I didn’t make a post on Monday. The main reason I didn’t was because I didn’t think any of us needed another “no change today” post. Well today the staff was talking about moving dad to a “skilled nursing facility” some time soon. The good thing about that is that dad is getting better and they consider him to be stable enough to be moved there. The bad thing about it (at least to us) is that we don’t know if they will be able to give him the care that he needs. Last year we had a bad experience where Grandma Alice Helenihi (dad’s mom) passed away in a nursing home. Although it wasn’t the fault of the nursing home (she should have been in the hospital, not a nursing home) we tend to think negatively about them. We got some good advice and reassurance from one of the nurses at Kindred. She had worked at many of the local facilities and recommended a few to go take a look at (which we will be doing in the next few days). Today was the first day since dad got the staph infection that he wasn’t given his antibiotic. Antibiotics are given in “courses” and yesterday was the last day in this course. We will have to wait and see if it did the trick. He did seem to be moving alot more tonight than he has in the past week or two. We are hoping that once the infection and pneumonia are under control that he will get back some strength and start waking more. Tomorrow the physical therapist is going to sit dad up in his therapy chair and we are going to take him outside for a little while and play him some music.

Posted by Greg Helenihi Saturday/Sunday-August 23/24, 2003

I decided to combine the Saturday and Sunday posts into a sort of weekend update. Dad’s condition is about the same. Slowly working on getting over the infection/pneumonia. Still not very responsive since the staph infection took hold.

I got an e-mail from Herb Pililaau with some information on Hank Lee:

Hi Greg and Clint - Thank you so much for letting us know of your Dad's daily status. I am sure everyone is praying for Dad's recovery. On Thursday, 8-21-03, brada Hank had a stroke, which left him paralyzed on his right side. He is at Tri-City Hospital, Oceanside off Highway 78, in room 329. Phone number is 760-940-7653. They have him listed as Henry Lee. I visited with him and talked story about Kam School days! I am able to understand him to some degree, but I am sure with therapy, he will be able to speak much clearer. His sister Evelyn was here to see him. She and her husband Frank, will be going to their Family reunion on Maui next week. She will return to San Diego on her way back to see brada Hank and get more status. Eventually she will take Hank to live with her in San Jose when he is able to travel. Please give our Alohas to your Mom Sue, and Nathan.

Take care bradas, brada Herb and Susan

We would ask everyone to also remember braddah Hank in their prayers. I was telling Herb that we all needed to be strong for both of them as they have always done for everyone else.

Posted by Greg Helenihi Friday-August 22, 2003

No change in dad’s condition so far this morning but mom just got off of the phone with Herb Pililaau who told her that dad’s good friend Hank Lee also had a stroke yesterday. Hank was right there when dad had his stroke. Our prayers go out to bruddah Hank and his family. We know full well what they are going through. I will be updating Hank’s condition when I am able to get more detailed information.

Posted by Greg Helenihi Thursday-August 21, 2003

No changes today.

Posted by Greg Helenihi Wednesday-August 20, 2003

Still trying to get dad all settled in and everything up to speed at the new hospital. Pretty much there now with the feeding machine hooked up and his IV antibiotic setup. He is still fighting the congestion and his mouth needs to be cleaned out frequently and suctioned occasionally. The physical therapist came to talk to us yesterday and get up to speed on him.

The new hospital has alot more places to eat near it. Lots of hamburger places and across the street has mexican and japanese food. I’ve been putting shower walls up today so i’m getting ready to go up there now.

Posted by Greg Helenihi Tuesday-August 19, 2003

Well it has been a month now since dad had his stroke. It has been the longest month of my life I can tell you that. Dad has been settled into Vencor hospital in room 113. The hospital is at 1940 El Cajon Blvd. in San Diego. The easiest way to get there is to take the 805 to El Cajon Blvd. and go west  to Florida Street. Turn right and you will see it on the left. I believe the sign says Kindred on it. If you turn on Florida street turn left up the ramp to get up to the hospital parking. Also, instead of turning on Florida St., you could go one street further to Georgia St. and find parking on the street.

Dad seems to be doing okay. The pneumonia, while still a big concern, seems to be going away. Everyone’s prayers are still very much appreciated (and needed). I am going to play him a little Hawaiian music this morning. Mostly because I know he likes it but also to see if anyone has a problem with it (in which case I will play some fast Tahitian Aparimas to give them a REAL reason to have a problem with it).

Posted by Greg Helenihi Monday-August 18, 2003

Dad is getting moved to a new hospital today. They are taking him to Vencor hospital. That is one of the Kindred hospitals. They are supposed to move him at about 5:00pm. I will let everyone know when its all said and done.

Posted by Greg Helenihi Sunday-August 17, 2003

Dad seemed better today. Breathing was a little better. I think he might be starting to get a little bit of strength back. The pneumonia is getting better but very slowly.

Posted by Greg Helenihi Saturday-August 16, 2003

Same status again today...

Posted by Greg Helenihi Friday-August 15, 2003

Dad is about the same today, maybe a little better. Not quite as much congestion. They are talking about moving him. Maybe to another room, maybe out of the hospital.

Posted by Greg Helenihi Thursday-August 14, 2003

Dad’s recovery from the MRSA infection and the related bout of pneumonia is taking a very long time. His breathing is still an issue because the air passages are continually coated with mucous. He can cough but he can’t swallow yet. All that can be done about it is to wait for the antibiotic to work and to clear his air passages with a suction machine. We have been cleaning his mouth out ourselves because some nurses will do it and some won’t. I think that he is getting better slowly because he is trying to breathe deeper and take longer breaths. One problem with this is that when he does breathe deeper his sleep apnea is much more apparent. Last night they had to put him back on an oxygen mask for awhile because his blood oxygen went down a little low. I’m wondering if it wasn’t because of the apnea. We are trying to let the staff know of the apnea but i’m not sure if they would even be able to put a CPAP machine on him in this condition. He did open his eyes for a minute or two yesterday morning and the therapists are still working with him.

Posted by Greg Helenihi Wednesday-August 13, 2003

Not much new today. Dad’s condition is the same, getting better slowly. Still not waking up much yet. The doctor said that his lab results came back and looked pretty good.

Posted by Greg Helenihi Tuesday-August 12, 2003

This morning we went to take a tour of Vencor Hospital which is part of the Kindred Healthcare system. The case worker at Sharp Memorial recommended that we take a look at their facilities because they have a Transitional Care Unit. Its a smaller hospital and looked pretty nice. The case worker for Vencor came to Sharp to evaluate dad and is checking the particulars to see if dad qualifies to get in (insurance coverage, medical condition). Since they have facilities that can meet dad’s needs, I told mom that if dad qualifies we should try to get dad in there if a bed becomes available. If we aren’t able to do that, when Sharp deems him medically fit, he will be moved to where ever has an open bed and can meet his medical needs. We also stopped by the Veterans Hospital in La Jolla and picked up an application just in case it becomes necessary to pursue that option (even though dad is a 30-year veteran of the Navy, we aren’t sure if he will qualify to get in there).

Dad seemed to be a little better today. Although he still needed suctioning to clear his air passages, he seemed to be breathing a little better. He opened his eyes briefly a few times and could nod answers to us. He is still very weak from the pneumonia and we are hoping that he will gain more strength as the pneumonia subsides. They have taken him off of all IV medication except for the antibiotic for the staph infection. He now has a feeding tube directly into his stomach. His stats are doing well.

Posted by Greg Helenihi Monday-August 11, 2003

Although there was not much change overall today he did seem a bit more... “awake” for lack of a better term. He wasn’t really awake but rather less asleep. A little more movement and more expression on the face. He didn’t seem to feel like opening his eyes. I held onto his hand for a bit while some of the Mele Ohana guys and girls played music for him. He would squeeze my hand every so often.

This morning we were on one of the local tv station morning shows doing a promotional spot for the Hanalei hotel. We just played a few songs for Babe Valero’s Motu Nehenehe dancers. That was kind of interesting. When they put the camera in your face suddenly you have two left hands and can’t remember the words to any song much less the one you’re singing at the time. Anyway, I hope I didn’t appear to be as dopey as I felt (probably did though heh). Dad would have loved being there.

Posted by Greg Helenihi Sunday-August 10, 2003

Not much change today. Dad is still sleeping most of the time. His temperature went up a little but not really bad. They gave him Tylenol to lower it. He is still needing suction to clear his air passages every so often. Dad got extra good care today. His RN was named Rick. Rick had a brother-in-law die recently because he had a stroke in his car and noone found him until about 10 hours later. So Rick did extra good for dad. Mom let today’s case nurse know of our unhappiness with the previous day’s nurse and she apologised and assured us that steps would be taken to see that it wouldn’t happen again.

Posted by Greg Helenihi Saturday-August 9, 2003

Well I saw and heard a few things on Friday that I wasn’t very happy about. First of all lets just say that some of the nursing staff are more on the ball than others (understand that MOST of them ARE on the ball). The problem with that is that there is a different nurse just about every day. So every day its necessary (at least we think so) to “brief” the new nurse as to what dad’s needs are. Sorry but yesterday we got one that wasn’t. Enough said. Of course we made sure that he got the care he needs. Dad is doing about the same. He had his eyes open a little bit. The pneumonia is still making him weak but the staff doesn’t seem to be worried about it. The doctor came by to take a look at him before she left for the weekend. Mom requested that a neurologist take a look at dad and give an assessment. Then the case worker talked to mom about what the options are when dad is ready to leave the hospital. It seems that their definition of  “ready to leave” is not even close to what mine is. In my mind, “ready to leave” means “fixed”. I understand that he is not really going to be “fixed” for quite awhile. But according to them he can still have everything hooked up to him that he has now and still require things that only doctors and nurses can provide, and be deemed “medically fit”. So, when he IS deemed medically fit, its time for him to go. The doctor said yesterday that the only thing that was really keeping him from being declared “medically fit” was the pneumonia from the staph infection (which he got from being in the hospital). Hearing this conversation with dad only a few feet down the hall, fighting the hardest battle of his life made me a little irate to say the least. Anyway the case worker was recommending we try to get dad into a Transitional Care Unit which would be able to take care of dad’s medical needs, and provide the rehabilitation for his stroke. From what I understand though, that option will only last for a few weeks at best. There were several other alternatives, none of which could provide for both the medical and rehab options. So dad would be just well enough to be discharged from the hospital, but not well enough to be taken in by the various “medical” facilities. I can’t help but imagine that if an HMO executive happened to be in the same condition that this same situation would NOT apply. I’ve come to the conclusion that medical insurance is an illusion that leads you to believe that when you are hurt or sick, you will be taken care of. <end rant>

Posted by Greg Helenihi Friday-August 8, 2003

Nothing new today. Dad is still fighting the pneumonia and is for the most part sleeping. The physical therapist and speech therapist both came to see him and they got him to respond a bit. Until the pneumonia and other afflictions aside from the stroke can be resolved, its going to be slow and difficult to make any headway regarding the stroke damage. We continue to play Hawaiian music for him everyday because we know he enjoys it even if he can’t respond to it at the time. The nurses and other patient’s families are enjoying it as well. You can imagine that we are all anxious when he doesn’t respond to us but we must trust that the Lord will make him well again.

Posted by Greg Helenihi Thursday-August 7, 2003

Well we know why dad has been having problems with his breathing again. He has a staph infection which has caused pneumonia (I guess different from the first bout of pneumonia). From what I understand, the staph infection is known as MRSA which tends to be resistant to most antibiotics. Hospitalized patients are said to be at risk of getting this infection and dad did. They are giving him multiple antibiotics now to try and get rid of it. The last thing he needed was something like this but hopefully the IV antibiotics are able to do the job. The doctor said that aside from the new infection, he does seem to be doing better. They have him sitting up for part of the day and the physical therapists are working with him. Anyone going in to see him has to put on a gown and gloves to minimize the risk of spreading the infection. He was sleepier today but with the new infection that makes sense. Anyone who gets pneumonia is going to be worn out. I think once they can get the pneumonia and internal bleeding under control he will be able to recuperate faster. Can’t help but be frustrated at these little setbacks though.

Posted by Greg Helenihi Wednesday-August 6, 2003

Dad was taken down for several tests today. They seem to think that the other blood thinner (Coumadin) has caused some ulcers in his stomach which is what caused the blood in the stool. They are giving him some medicine that they said was like Pepcid to fix it. Stats look pretty good. Even with all of the activity today he seemed to look better than yesterday. Lots of visitors today and lots of music for him too. He seems to really like when music is played for him. His left hand moves as if he were trying to play along and his feet move as well. The physical therapists had him sit in a chair today (they assisted him into the chair). They also put some braces on his feet and lower legs to keep them in the right position. They still have to keep an eye on his breathing to make sure his air passages stay clear and to use the suction machine when its necessary. He is in good hands with the doctors and nurses at Sharp.

Posted by Greg Helenihi Tuesday-August 5, 2003

This morning was interesting for awhile. When we got there we went to the room that they moved him to last night. Well he wasn’t there. They had moved him back down to observation because they found some blood in his stool. So he is bleeding inside somewhere. They did more tests and he is supposed to have an internal medicine specialist take a look at him. His stats seem to be doing fine. Heartrate, blood pressure, and blood oxygen levels are good. Temperature seems to be pretty good without the cooling blanket on. Sometimes they give him Tylenol if it goes up. Today the physical therapist actually sat him up on the edge of the bed with his feet on the floor and made him sit up on his own for a little while. She also had him raise his head a few times and push with both arms and legs. She seemed pleased with what he did. He was sleepier today than yesterday and was having a little trouble breathing. Since he can’t swallow yet, any build up in his air passages makes it harder for him to breathe. They had to use the suction machine on him a few times. Hopefully we will find out tomorrow about his internal bleeding and what can be done to fix it.

Posted by Greg Helenihi Monday-August 4, 2003

Dad did pretty well yesterday. His stats were good, and his temperature stayed down without the cooling blanket. They have had him in the cardiac monitoring section since he arrived on Friday and last night they said that his heart was doing good so they moved him out of the cardiac section. He still has periods when he is sleeping and periods when he is more awake. Right now, even when he is awake you can see that it takes alot of effort for him to do much. So far his grandson Nathan has been able to get the most reaction out of him. He always smiles when he knows Nathan is there and he actually took Nathan’s hand with his left hand and pulled him closer. The doctor said that if after the swallow study he seems to be unable to swallow, they would probably put a feeding line directly into his stomach. This would allow them to remove the feeding line from his nose. Clint Jr. found out that we could buy parking passes for $10 for 7 days. That way we can come and go as needed. Thats alot better than the $140 dollars that it would cost otherwise.

Posted by Greg Helenihi Sunday-August 3, 2003

The drive to the hospital this morning was quite nice. Only 10 minutes or so. =)   They had dad down taking some x-rays when we got there. Jack Knight was there and had played some ukulele for him. Jack said that got some reaction from him. Not much change in status overall today. The physical therapist came by and worked on a few things. Can’t do much till he starts coming around more. His temperature was a bit high in the morning but they lowered it with a cooling blanket and it seemed to stay down. They didn’t get any parking money from me today, I found a spot on the street... neener.

Posted by Greg Helenihi Saturday-August 2, 2003

After a long morning waiting for the ambulance to show up, dad was finally transported to San Diego Friday afternoon. He was pretty tired after the trip and is resting now. The temperature is still wanting to creep up if not kept in check. I guess the new hospital has to do all of its own tests on him now. Makes you wonder what information gets sent with the patient when moved to a new hospital. I know that Gardena Memorial had a big 3 ring binder that had dad’s name on it. It was about full too. Anyway the new doctor said they would start doing tests tomorrow. The new hospital is Sharp Memorial in San Diego. It is much bigger and considerably busier than Gardena Memorial. Oh, before I forget... who do I talk to (or yell at) about the ridiculous parking prices at Sharp? I was there for 48 minutes today... that costed $4.00. Puh-leeeese! It was all I could do to not do bodily harm to the parking attendant. Sorry but that is outright theivery. They must have a special ward on the 12th floor for beatup parking attendants. Part of that $4.00 better go to making my dad get better.

The Luau for the San Diego Police Officers Association went well today. Dad was supposed to have participated in it. The Mele Ohana ukulele group did themselves and dad proud by providing Hawaiian music with the help of Uncle Bobby Ohumukini. Then Babe Valero’s Motu Nehenehe group put on the finishing touch. Great job guys.

As before we would ask people not to contact the hospital directly for information on dad, but rather to contact us. It might be a good idea to wait a few days before trying a visit. Give him time to get settled in.

Posted by Greg Helenihi Friday-August 1, 2003

Dad was pretty good today. Most of the day was spent trying to arrange for dad to be transported to San Diego but unfortunately it didn’t happen. They are trying for tomorrow morning. Mom is going to need alot of rest once they do get him down here. The gig went very well tonight. Many thanks to Uncle Charlie and Aunty Ilima. You guys are the best. Clint Jr. handled the lead vocals on his songs and on the ones dad usually sang. I hope my backing vocals were okay. Nobody threw a shoe at me so I guess they were heh. Once dad is here in San Diego we can start thinking about therapy and rehab. We can start finding out the extent of the damage and how to go about making it better.

Posted by Greg Helenihi Thursday-July 31, 2003

Today was pretty much the same status as yesterday. All stats nominal (temp still sneaking up sometimes). Dad was awake off and on. The doctors are considering the possibility of sending dad to San Diego as soon as tomorrow maybe. Alot of “ifs” in there though. If he stays stable, if the case workers at the respective hospitals can arrange it, if the doctors all think its a good idea, and if there is an available bed in the receiving hospital. We were told that the transporting ambulance will have paramedics and an RN onboard. Any troubles and they will rush to the nearest hospital. Clint Jr. and I have to play a gig tonight that dad had arranged awhile ago. Uncle Charlie and Aunty Ilima have graciously agreed to help us. This will be the first gig that Clint and I have played without dad there. Wish us luck. But like brother Gordon Freitas said “Uncle Clinton said to be there so we are gonna BE THERE”.

Posted by Greg Helenihi Wednesday-July 30, 2003

Not too much change in news today. John Kaulukukui was there early as usual (for everyone that wishes that there was something they could do to help, no worry... John has EVERYBODY covered in that area) and said that dad was up with eyes open. Not too long after Jack Knight and Lori Bulat came by to see how dad was. They brought him a great picture of the Mele Ohana ukulele class and a gorgeous stalk of yellow ginger (grown by Lori herself) in a nice bamboo vase. Mom and I got there a little later (after taking care of some business in San Diego in the morning) and dad was still awake with eyes open. So dad was awake and responsive for quite awhile today. In the evening one of the doctors had said that he wasn’t as responsive today as yesterday because he didn’t respond too much to him in the evening. We told him that he was probably just tired and sleeping from being up so much and being worn out from so much activity earlier. The stats seemed to be pretty good throughout the day. The only thing that concerns the doctors is that his temperature creeps up every now and then. They said it could possibly be from the pneumonia or maybe even left overs from the stomach bleeding. In any case, tomorrow he will be checked out by a doctor who specializes in infections (not sure what that kind of doctor is called). Still on a wait and see basis as far as getting him transported to San Diego. Not until stable. I concur.

Posted by Greg Helenihi Tuesday-July 29, 2003

Today’s news is much better than yesterday’s. The bleeding in dad’s stomach is better and the doctors have taken him off of one of the blood thinners. No bleeding in the stomach since last night. His stats, although slightly high, are better and the doctors are hoping that the bleeding problem is taken care of. Dad was responding pretty well today. It was the longest period that I have seen him with his eyes open so far, about 20 minutes or so. Aunty Sharon was talking to him for awhile and we read him some of your e-mails. He was answering with a nod of the head. The doctors were pleased. If the bleeding stays fixed and his stats look good it may be possible that he could be transported to San Diego this week. But the doctors won’t let that happen until he is stable and we agree.

Posted by Greg Helenihi Monday-July 28, 2003

Sorry for the late post. I decided to get some sleep and post this in the morning. Dad’s temperature and heartrate went up pretty high yesterday and then blood started coming up his feeding tube. Things were tense for awhile. The doctors said that dad’s stomach started bleeding inside because of the blood thinners. They said that that happens sometimes. They did more tests and the doctor gave him something else to try and stop the bleeding. The temperature and heartrate seem to be getting better this morning. Hopefully nothing else like this happens again.

Posted by Greg Helenihi Sunday-July 27, 2003

You may have noticed that my posts seem to be a day off sometimes. This is because I am posting late at night and the day’s post, Sunday for example, is actually saying what happened on Saturday.

Better news today as dad has finally started responding to us again. Many family and friends visited him today and it was encouraging to see dad open his eyes and try to respond to us. He seems to be slowly getting over the pneumonia and infection so that is good news as well. We are still trying to contact as many people as we can to let them know of dad’s condition and to try to make sure that all of dad’s commitments are met (and he had alot of them). Many thanks again for all of the prayers for dad. The Elders came to bless him the other day and brother Mike Murphy has been among the many people in daily prayer for dad. Mahalo nui loa to all.

Posted by Greg Helenihi Saturday-July 26, 2003

They finally got the MRI done (this was on Friday) and the results back so we at least have some idea of what is going on. The neuro-surgeon got us together and tried to give us an overall picture of what happened and what can be done. I understood about a tenth of what he talked about but i’ll try to explain as well as I can. It looks like the stroke hit multiple parts of the brain, probably one right after the other. Most of the damage was in the rear of the brain. This will affect his balance (walking, sitting), vision (eye movement), speech, and motor activity on his right side (arm and leg movement). There was also a small amount of damage to the brain stem. One of the things affected by this is the wake/sleep center. The doctor feels that this is why he is having problems waking up. For now he has prescribed a blood thinner to increase the flow of blood to the brain, and another medication which he said was used on narcolepsy patients to try to help him to wake up. The doctors say that the pneumonia and the infection are improving and that for now his heart seems to be doing okay. It will be at least a few more days before he can be moved to San Diego. We all want him to be as stable as possible before attempting transport. It will definately take many months of therapy before we will actually get the full picture.

Many family and friends continue to send their thoughts, prayers and blessings. We appreciate each and every one. Dad would be touched by the outpouring of aloha on his behalf. Mahalo to brother Gordon , Aunty Momi, Aunty Nani, Herb Lee, Irwin and Betty Cockett, Scott Ho’oheno, and Ed Palama for making the Korean Veterans Luau such a big success. Dad was supposed to have gone to Hawaii last Wednesday to participate in it. We love all you folks.

Oh heres an important safety tip: Stay clear of the Redondo Beach Motel... trust me on this one.

Posted by Greg Helenihi Friday-July 25, 2003

Dad’s condition was about the same today. All of his stats seem to be pretty steady (temperature, blood pressure, heart rate). They did put him on a “breathing” machine but only to help his sleep apnea (which is when someone has tendencies to stop breathing for short periods while asleep). Dad has done that all his life though. We got to talk to all three doctors today and they all agree that his pneumonia and infection seem to be getting better. They are however concerned that he is not waking up. He has been responsive for short periods everyday, but even then seems kind of sedated and goes back to sleep (John Kaulukukui and Jack Knight had him going this morning). Hopefully he is just catching up on all of the sleep that he has always needed but didn’t get enough of. Still the doctors say that it still may be too early to tell and that we all should be trying to get him to wake up and respond. They are sending him for an MRI tomorrow (the first one didn’t work because he moved around too much) and the neuro-surgeon will be able to tell more from that. Everyone keep up the prayers and positive thoughts!

Posted by Greg Helenihi Thursday-July 24, 2003

We got a call on Wednesday morning from the hospital asking for permission to have a doctor put what they called a “line” into his arm. They said that the normal IVs weren’t having enough effect and that they were having problems keeping them in. The “line” should get his mediactions where they need to be faster. He wasn’t quite as active today as he was yesterday but was still reponsive when people were around. The nurse let me play some Hawaiian music for him with my MP3 player and the earphones that sit in your ear. When I first put the earphones in he nodded his head up and down. His temperature is fluctuating up and down a bit but not into dangerous areas... small kind. Blood oxygen levels are staying good and blood pressure somewhat low (and him always fighting and taking medicine for high blood pressure). The ICU staff is doing a great job and we are thankful to have them there. Many thanks to brother John Kaulukukui for being there today for him (and for the super blueberry earphones he got for dad). Oh yeah, the L&L Hawaiian Barbeque on Redondo Beach Blvd. get onolicious food!

Posted by Greg Helenihi Wednesday-July 23, 2003

Just got back again from the hospital so I wanted to let everyone know how things stand. Dad is still in the ICU and they are still working on getting the pneumonia and chest infection problems under control. His fever seems to be down and thats good news. He is still considered in critical but stable condition. We were also told that his heart was weak so they have taken that into consideration. He came around a bit more today but is still very much "out of it". His speech when he tries to talk is still slurred.

On the positive side, he still definately knows who and what he is. One of the doctors said that he "spoke" with him. The doctor asked if he was Samoan and dad said "No i'm Hawaiian". Then the doctor asked "Oh really? Where are you from?" and he answered "I'm from Honolulu on Oahu". I am sure that his speech was somewhat slurred but evidently understandable. Also today on several occasions he was able to nod to communicate with us and smiled at comments from cousins Pam and Puala as well as John Kaulukukui.

We will be going back up in the morning after we take care of a few things down here in San Diego. Keep the prayers coming...

Posted by Greg Helenihi Tuesday-July 22, 2003

We have just returned from the hospital (Gardena Memorial) to take care of a few things here in San Diego before going back up tomorrow morning. Dad is resting in Intensive Care and although his condition is still critical, it has become more stable. The doctors say that he did indeed suffer a stroke and that his heart is fairly weak right now. Also, because of complications from the stroke, he has an infection in his chest and pneumonia. Their first priority is to bring the infection and pneumonia under control. When he is stable he will be transported to a facility in San Diego where he lives. They are still running many tests daily and it is still not clear as to when moving him will be possible. I will be posting any changes to his condition as soon as I possibly can.

Many thanks to all of those who helped with him at the Ho’olaulea. Also thank you for your continuing prayers on his behalf. Many have called and visited the hospital with messages of encouragement and we appreciate each and every one. Once again... Mahalo to all.

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