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JUN 15, 2003  Well, I was certainly hoping to post an update sooner then this, but life is very difficult these days and I just haven’t had it in me. I'll try and pick up where I left off in our last post and cover as much ground as I possibly can. First off, Debi continues to make very slow progress. She is now very active with her left leg and we're starting to see more activity in her right leg once again. I've been working with her trying to hold her balance a little each day while in her standing frame and as a result, Debi seems to be gaining more control over the muscles in her back. Unfortunately, this has also had a negative affect, because she now tends to tense up when it comes to me lifting her from her chair to bed and back again. As you may know, the only physical therapy Debi has received since being released from Casa Colina Rehabilitation Hospital in January has come for our family. We continue to do the best we can, but in all honesty we have no idea what we’re really doing. With that said, I've found a device called the Quadriciser that has been used by several brain injured patients with very favorable results. Some of which have actually learned to speak as a result of using this device. Anyway, I contacted the occupational therapist that had been assigned to us for a short while to see if our insurance would cover the cost of the Quadriciser and I’m still waiting for their response, but I've been told that I shouldn't be holding my breath! That's a pretty hard pill to swallow when you're paying almost $700.00 a month for medical insurance.
Speech therapy: Debi is still unable to speak, but she continues to eat a Popsicle every day and I've just started giving her pudding again. Her chewing is also getting much better lately. Unfortunately, our insurance company took our speech therapist away last month and we are now left to fend for ourselves in that department as well. As you may remember in our last post, we had just met with a neurologist and scheduled Debi for an MRI with the hopes of not only learning the cause of her brain damage, but also finding out why her recovery tends to be such a roller coaster ride. Unfortunately, none of our questions were really answered and I was told that there could have been any number of reasons for the damage seen on her MRI. What they fail to remember however, is that Debi drove herself to the hospital many times before finally being admitted, they diagnosed her, they treated her and they carried her out on a stretcher...period! We trusted Debi's doctor with our most precious possession and were never warned of any neurological risks involved with her treatment, yet they take no responsibility for the outcome of their actions. All we’re asking is that our insurance company helps us pick up the pieces we've been left with, apparently that’s too much to ask for. With all that said, we finally decided to bite the bullet and turn to the community for help. We met with our local newspaper last Tuesday and poured our hearts out to them for nearly two hours. I had thought that the interview had gone pretty well, but unfortunately very little of what we had hoped to convey to the public ever made the paper. For that reason, I've decided to just go ahead and post our needs here and hope for the best. I should also mention that we live in Victorville Ca. Volunteer therapists: Speech, Physical, Occupational, Massage and Acupuncturist. We also have a CyberLink. If anyone has any skills with regards to teaching the CyberLink or a similar communication device to brain injured people, please help us! Money: In all probability, our insurance company will turn us down and we'll be forced to purchase a device like the Quadriciser ourselves and they tend to be very expensive. We also have no way of leaving the house as a family and participating in our children's lives because we don’t have any type of vehicle equipped to accommodate a wheelchair. Programs: It will at some point become necessary for me to return to work, but I haven't been able to find any programs to help pay for hospice care while I’m away. If any of you know about any programs that we might be eligible for, please let us know. If you think that you might like to get involved with any of this or would simply like to pass along some helpful information, we can be reached by any of the following methods. Thank you Nick Moretta – Trust for Debi c/o Diane Carlon 7778 SVL Box Victorville, CA 92392 Nick@DebraMoretta.com Well, yesterday we went through with the botox injections I talked about in our last post. Debi received three injections in each arm and one in the palm of her left hand with the hopes of relieving the contractions we've been dealing with for a very long time. We were told that it may take a few days before we notice any change and it should last for about three months. I’d also like to say that Debi did very well with this procedure, which looked to be very painful.  As you might remember from previous posts, the 35 mile ride to the hospital has been very difficult for Debi in the past, but thanks to some wonderful CD's sent to us by our newest Angel, "Cathy" from New Jersey, the ride was an absolute piece of cake. Thanks Cathy, you’re the best! Really put a smile on Debi's face.
Most of you know that Debi's sister Sheila created this web site. And I'm sure that many of you know that both Debi and Shelia our huge Bon Jovi fans, but what you may not know is that when Sheila originally created this site, she did it knowing that by posting a link on the backstage with Jon Bon Jovi bulletin board, she could get people from all over the world praying for Debi and that was her real goal. Well, if you’ve spent any time at all reading our guest book, I'm sure you’ve looked in awe as you've read where some of these people are posting from...its truly unbelievable and I'd just like to take a moment to thank each and every one of them for their continued prayers and support. Once again, thank you all for keeping us in your daily prayers. Happy Fathers Day and may God bless you and your entire family. Be sure to click the photos to view larger versions. -- Posted by Nick MAY 9, 2003  Well, not long after our last update Debi entered yet another very tough phase in her recovery and as it turned out, this one was by far the most difficult we've had to deal with since being home. About the only way I can describe it is to say that she would scream, sometimes uncontrollably at the drop of a hat. In other words, something as simple as asking Debi to try and speak would prompt an emotional out burst. As you might imagine, this makes therapy very difficult and I was forced to discontinue using the CyberLink for over a week.
Anyway, as luck would have it I scheduled an appointment with a neurologist that fell within this very difficult phase. My hope was that Debi would be given an MRI and they could possibly offer some kind of explanation as to why this was happening, however I was told an MRI wasn’t possible until the 8th of May. Given the fact that Debi had screamed the entire thirty-five mile trip to the doctor's office, this was not good news. As a matter of fact, the ride was so difficult for Debi that our driver requested someone else to take her place driving us home. We were also forced to cancel another doctor's appointment the very next week because Debi's screaming had reached an all time high. This was very disappointing because this doctor was going to examine Debi for possible "botox" injections to alleviate some of her muscle contractions. I was however able to reschedule both the botox and MRI for the same day, May 19th, so at least we’ll be taking care of both appointments in a single trip. I only pray that Debi’s doing better by then. As for now, Debi seems to be pretty much through the worst part. She seems to have a little more control over her emotions and we're back at working with the CyberLink a little bit each day. I'm including this very small video clip to show you exactly how she's doing with it. Debi’s paddle is the one on the left side of your screen; keep in mind that she operates it by using three sensors strapped to her forehead. It’s truly unbelievable! Another thing I'd like to talk about is eating. As some of you might remember a couple of months ago we were working with Debi trying to eat. At the time we were using Popsicles, chocolate pudding, mash potatoes & gravy and apple sauce, however at one point we became concerned that maybe she was not quite ready for actual food and therefore we discontinued everything but the Popsicles. Debi’s been eating a crushed Popsicle most every day for quite awhile now and I'm happy to say she's been doing very well with it. She's even starting to chew a little now. I certainly don’t want to rush her, but if she continues doing well we should be able to try her on soft foods again soon. I've also started working with Debi kicking a red rubber ball. My thinking was that this would give her some kind of feedback and so far she seems to be doing pretty well with it. I'd also like to say that Debi's sisters have recently updated our detailed story page and I would urge you all to read it. If you think this kind of thing always happens to the other guy...think again! Special thanks: well as you may know, from time to time someone will write us a prayer, sent us a caring e-mail or maybe even suggest a particular type of music that helped them during a similar crisis. Whatever the case may be, I've always tried to post a little something thanking them for reassuring us that people are still out there following Debi’s progress and keeping us in their daily prayers. With that said, I'm embarrassed to say that we received a prayer several weeks ago, which I added to our home page at the time, but unfortunately due to a computer virus, I lost the persons name that wrote it for us and I’m unable to thank them in the manner that I would have preferred. If they're reading this update, I'd just like to say thank you! And finally, I'd like to thank Dave Hallock, who once again has sent his Angles to help us through yet another truly difficult time. Thanks again Dave, you're a good man! Now it's time to talk about something very difficult for me. We were recently told that we had been denied a service that we desperately need based on someone's perception of information they read on this web site. It should be made clear that we do not know what happened to Debi. Although we’ve been given a couple of theories and we may have our own beliefs, no clear-cut reason has ever been given to us. With that said, it has been suggested that we put something on this site letting people know that we are looking for some kind of program setup for middle income people in need. If this sounds like something you may be able to help with, please click here for more information. Once again, thanks for keeping us in your daily prayers, Happy Mothers Day and may God bless you all. Be sure to click the photo to view a larger version. -- Posted by Nick APR. 15, 2003     I know it’s been a while since my last update, but in all honesty it's been very difficult to find any free time lately. Debi continues along pretty much the same course, having some very good days followed by some no so good days. Although she's using her left arm a little more, it's still not to the point where we can start working with the computer mouse again yet. As for Debi's right arm, it's now pretty well relaxed most of the time, however she's not really able to move it when asked, hopefully that will change soon.
We have however had a few very nice breakthroughs worth mentioning lately. Several weeks ago our daughter “Kristina”, found a battery operated buzzer in one of her board games and brought to Debi. We started working with Debi pushing the buzzer with her left hand while in her standing frame and within the last few days she's really started to pick it up, making the buzzer start and stop most every time she’s been asked. By far the biggest breakthrough however came on Sunday 4-13. As you may have read, several months ago I purchased a device called CyberLink. The Cyberlink is designed for people to communicate by using brain waves and or muscle movement such as eye blinks to operate several different computer programs. I’ve attempted to work with Debi many times trying to learn the Cyberlink, however we haven’t had much success because Debi’s muscle movements tend to be very erratic some times, that is until last Sunday. I've been noticing that Debi seems to be slightly more in control lately, so I thought it might be worth breaking out the Cyberlink. I set Debi up with a simple game of “Pong”, where by using her brain waves she moves the paddle up and down the screen trying to hit the ball back to the computerized player. Debi did unbelievably well and actually scored a couple of times throughout the course of maybe an hour. I even placed my finger on the screen and had Debi hold the paddle on my finger...unbelievable! We were so impressed; we videotaped her playing just to prove she had done it. I’m hoping to incorporate this into our daily plan and future updates. Once again I'd like to thank everyone at Southern California Edison Company. I can’t imagine how we could have survived without your generosity and I truly believe Debi is alive today because of you all. With that said, from what I've been told the company has recently collected enough vacation through your donations to get us through the month of October 2003...unbelievable! Thank you all and may God bless each and every one of you. Be sure to click the photos to view a larger version. -- Posted by Nick MAR. 21, 2003  Great news: Last Friday I received a call from Debi’s oncologist. He told me that along with Debi’s latest blood test he ordered a specific test to look for the presents of a particular chromosome that was seen when Debi was originally diagnosed. He said the results were negative for this chromosome and that this was a very good indication that Debi’s leukemia was indeed still in remission…Thank God.
Well, Wednesday the 19th was Debi’s 43rd birthday and a few of her closest friends dropped by to celebrate it with us. As you might imagine this turned out to be a pretty emotional day for Debi, but I’m sure she really enjoyed herself and greatly appreciated being able to visit with everybody. Nothing like having good friends. Be sure to click the photo to view a larger version. Debi’s progress is still quite slow and she continues going through various changes, some good, some not so good. For example: Debi recently lost the ability to move her left arm, which we had been using to move a computer mouse in an attempt to setup some kind of commutation device. As I’ve mentioned before however, she’s gaining slightly more control over her right arm which has been contracted for several months. She’s also now able to move both of her legs at the hip, which until recently wasn’t possible for her to do on her own. The new leg movements are defiantly a blessing, but they also present a new set of problems for us, the biggest being that as she lifts her knees, she drags herself down the bed. Because Debi receives her nourishment directly into her stomach through a tube, her upper body needs to be constantly elevated to prevent aspiration. As she becomes lower in the bed, her upper body becomes more level and she sets herself up to aspirate. Another thing worth mentioning is that Debi seems to be entering another hypersensitive phase. She seems to be affected by certain noises and startles more easily. As most of you know, we’ve seen this kind of thing several times throughout Debi’s recovery and once it passes something good always seems to come from it. Lets pray this holds true this time as well. It’s almost as if her brain shuts off certain areas and turns on others in an attempt to find new ways of making things work again. Here’s the latest: As most of you know, because Debi is still unable to swallow with any reliability, she has a tube in her stomach that exits her body just above the belly button. This is how she receives all of her medications and nourishment. Yesterday around 8:30 A.M. I was getting ready to give Debi her first round of medications and the tube simply fell out of her body. At first I considered calling 911, but then decided to call one of Debi’s therapists “Colleen”. Colleen knew just what to do and within minutes she had arranged transportation for us to the hospital. I remembered the doctor that installed the original tube telling me that if the tube was removed, the hole would close in approximately six hours, so I decided to cut off the end of the tube, clean it and stick it back in her stomach to try and keep the hole open. When we arrived at the hospital about two hours later, all they had to do was replace the tube, check its placement and send us on our way…piece of cake! Thanks Colleen. I’d also like to take this time to thank both of our ambulance crews for making what could have been a difficult ride, very enjoyable. Thank you. On a lighter note, Debi’s new wheelchair finally arrived on her birthday. The new chair is certainly very nice and offers Debi more comfort and better head support then the other one did. Our next step is to try and get some kind of van type transportation as the cost of a round trip doctor’s appointment is several hundred dollars and is not covered by our insurance. With summer approaching a van would also put back a little normalcy in our lives. As always, thanks for keeping us in your daily prayers and may God bless you all. Updating Crystal Chavez: I spoke with her father "Luis" today and he said that she’s completed her chemotherapy and home doing very well. He also said that she may soon be under going radiation as part of her over all treatment. Please join us in keeping Crystal and her family in your daily prayers. Thank you. -- Posted by Nick MAR. 8, 2003  Well, things are pretty much the same as they were with our last post. Debi still hasn’t regained the use of her left hand quite yet so working with the mouse has been pretty much impossible, but at the same time she's starting to move her right arm slightly more lately. I'm not sure what to make of this as we've seen it before, but it only lasted a short time. Debi is however doing better with eating and did quite well with the chocolate pudding I mentioned in our last post. Since then she has also had mashed potatoes and gravy, which she’s also did very well with. Our next plan is to go ahead with small amounts of baby food, as Debi is still not able to chew and therefore anything solid is out of the question.
As for Debi's muscle contractions, the "Baclofen" was restarted as I mentioned and we’ve also hooked up with a visiting doctor that has increased the dosage. This has most defiantly helped and I’m now able to get Debi back into her standing frame, which I've been trying to do a little bit everyday. March is a very busy time for us. Debi and I just celebrated our 17th wedding anniversary on March 1st, both of our birthdays are in March and last year at this time Debi was just completing her chemotherapy. All seemed to be going ok and her doctors had told us that she'd be just fine, however as you know Debi lapsed into a coma during the night of March 9th, 2002. The following was copied word for word from the very last entry Debi made in a journal she was keeping during her treatments. "March 8, 2002, - The last bag (7th) of chemo finished yesterday at 5:00. Right now I'm not hooked up to anything. That feels really good. I don't know how long that will last though. I got a copy of my labs this a.m. and my WBC went from 400 to 700. It's supposed to go the other way. This may mean I'll have to have another round of chemo. I'm pretty down about that this morning. I haven't talked to the doctor yet today though. I'm just preparing myself for that news. I was hoping we could get everything the first round! I guess this invader is going to be tough; I'll just have to be tougher!" The very next day Debi became very ill and therefore this was the last thing she ever wrote. Please keep your prayers coming as we can use them now more then ever and may God bless you all. The photo was taken on February 27th, while working with “Kathleen” our speech therapist. The exercise was for Debi to keep her head off the pillow while mimicking various sounds that Kathleen would give her. Be sure to click the image to view a larger version. -- Posted by Nick
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