Father's Day June 15, 2008
Cade is doing just great. From where he has been to where he is today, he's come a long way. He is very stable with no medical issues. He is making small strides in therapy, but continues to be non-verbal and fully dependent.
We have seen great improvements since the baclofen pump was removed on May 19th. He is more aware, more responsive to what we ask of him in therapy and we see more purposeful movements than before. His spasticity is stable and controlled and we are focusing on his orthopedic issues, both the foot and knee contractures. We began "serial casting" of his feet to correct his contractures there. The process is a series of casts on his legs from his knees down where his feet are slowly stretched back in neutral alignment. We are encouraged at the progress we saw when the first casts where taken off last week. He was re-casted and they will stay on about two weeks. This process will go on for about the next 6 weeks or so as we assess the changes being made. Having the casts on has limited the standing time Cade has, so we are working more on his arms, range of motion, oral motor and vision. There is so much to do. Cade is currently receiving 5 days a week of home-based physical therapy and the benefits are obvious. And soon, we will be bringing on an Occupational and Speech therapist.
Cade continues to be non-verbal but he is pretty clear with what he wants or feels through facial expressions and sounds. Cade was tested on a communication device that is a computer that works with eye gazing. Cade did well on it so the school district has agreed to supply one for Cade to work on. He can control the mouse curser with his eyes and make selections. It has lots of potential for Cade and we are excited to be getting it over the next couple of weeks.
Cade is certainly moving around more than ever. He is definately not safe unsupervised in a chair or bed anymore. He wants to get up! He has learned to use his upper body to move him forward, in an attempt to sit up, but the rest of his body doesn't seem to follow, especially his legs with the heavy casts. So he can tip or fall out of a chair easily.
His oral mouth eating of different foods has improved as well. We hired feeding specialist who really opened up some new paths for us. Cade can not at this time bring his hand to his mouth, but he is showing great improvement in being feed a variety of foods. Not only is he learning to work with different textures but is even beginning to chew and the quantity of the food given him by mouth is increasing. Practice, practice, practice.
All in all, things are moving in the right direction....even though they are slow. We are providing Cade with every therapy, outside stimulation and opportunity we can think of. We are so grateful for "Team Cade", our therapists and para-professionals who have made Cade a comittment in their life.
I've included a family update on the next page, Thoughts. As always, we thank you for your continued love, support and prayers for our family during Cade's recovery.
May 20, 2008
Cade is home and doing well. Everything went well with the baclofen pump removal surgery. Cade was extemely anxious the evening before and the morning of, and who could blame him. But the surgery was short, the pump and catheter were removed, Cade was stitched up and sent to recovery. The doctors found exactly what we suspected.....the catheter tubing that carries the medicine to his spinal column has a huge crack, and in essense, Cade was getting no medication at all.
A small amount of cerebral spinal fluid leaked out of Cade's spine during the removal of the catheter.....nothing serious, but it can give you a whopping headache. So they chose to keep him overnight and he needed to lay flat on his back for 24 hours. This morning, we slowly started raising the head of his bed and got him back on food. All went smoothly, so they discharged us home in the early afternoon.
Cade is sore from the stitches in his back but not much other than that. We are grateful to be home and we are all looking forward to a good nights sleep. I have a million thoughts racing through my head and so I have decided I need to journal on the Thoughts page.
Onward and upwards!
May 16, 2008
A brief update is due.....free time is so short around here. Cade continues to do well and works hard with the therapies he has. We are still looking/praying/expecting more purposeful movements....we see slight improvements in that every week. And he continues to be non-verbal, although he is vocalizing and using his voice more.
Medically, we have made the very difficult decision to have Cade undergo one more surgery.....albeit a minor one. Cade's baclofen pump has been inoperative since the major withdrawal episode in January. So we have decided that the time is right to take the whole system out. It is a minor procedure and it will be done at CHOC on Monday May 19th. I have held off saying anything about it until we were sure, but we are. The container that holds the medicine is about 4" in diameter, sitting right on top of his hip bone underneath his skin. And then the tiny plastic catheter goes around the back and into his spinal column. Joel and I have never thought it was a good thing to have this foreign mechanical piece of equipment in his body, and now that it doesn't work, we say get it out. We think this is sort of a Yahoo moment. We are not thrilled about the surgery needed, but we are so happy we will finally be rid of that awful contraption. Will we see any improvements from the removal? Probably not so much. But at least it will be out and I believe Cade will be more comfortable. It has given us more problems than solutions. So far, it is not clear if Cade will stay over one night at CHOC or be released that afternoon.....depends on how he tolerates the surgery and does in recovery. He will have stitches in his stomache where the pump was removed and stitches in his back where the catheter was pulled. We decided to move ahead, get it behind us.....and then continue to concentrate on recovery, therapy......and getting in some pool therapy this summer.
We have decided with the weather being so good to pack up the Sportsmobile and head to the Santa Barbara area with Cade for the weekend. A diversion for everyone. Some beach time, camping out and some overdue time to relax. So with that said, I need to rush off and finish getting together every little thing we might need. I will post asap next week and let you know how well everything went with Cade's surgery. We are sure he will bounce right back and be in therapy by Wed. Until then, please know that we feel your continued love and prayers for Cade and we are so grateful.
In His name,
Joel and Lisa
April 27, 2008
These past two weeks have been crazy with changes and improvements! First, the most exciting news is the baclofen pump. As you know, we believe that the medical complications that Cade experienced in Jan/February were baclofen withdrawal....meaning that the pump was not delivering the medication, and he went through very serious withdrawal. After much searching and consultations with many different doctors, we agreed to have the pump shut off, to see if it made any difference to Cade. Almost immediately, we saw some real improvements (which doesn't make much sense, as the pump was supposed to help Cade's spasticity). The pump has been off for almost 2 weeks and so many things have changed for the better. Even our neurosurgeon agreed it doesn't add up, but Cade has not ever done anything like the typical head injured person. Much to the doctor's suprise, they have agreed that if things continue like this for another couple of weeks, Cade can have the pump removed in an out-patient surgery at CHOC. An answer to our prayers......
So, you ask, what improvements are we talking about? He is more relaxed, has less muscle tone, more alert, no spells of agitation or autonomic dysfunction. He sits better, stands better, has better range of motion, more vocal. We are getting purposeful movement of his arms during therapy, pushing them down, trying hard to pull them up. He is activating the muscles in his arms when we ask him to. I think that is huge. He comprehends what we are asking.....waits until the count gets to 3 before he starts.....and then pushes or pulls his arms. His head is turning more to the left and right....and he holds it better, right in mid-line with less effort. In the past three days, I have seen him trying to assist in transferring to the wheelchair by leaning forward and then sitting down when we pivot him to the chair. And best yet, he is activating his stomache and upper body in an attempt to sit up when in a reclined position. At first, I wasn't sure what he was trying to do. Now I realize he wants to sit up. So sit up it is!!! We have been working on this alot these past two days. And what about his hands?!?! Ever since the baclofen withdrawal in January, they have been stuck in a clenched fist. With alot of good therapy and stretching, his hands are more relaxed.....we are getting opening and closing on command when he is working hard. It's important to point out to you that on some days, these changes are more sutble, other days they seem more dramatic. Some days they are consistent, other days they are not. But each day that goes by, we are seeing more and more from him in all areas of his recovery.
And boy is he working hard. Cade seems to get up about dawn, and it is therapy, rest, therapy, rest all day long. After some passive assist range of motions, we get him standing or sitting. We have also started "walking" him.....I call it "stepping out".....where one person holds him under the arms and another bends his knees and moves his feet out, alternating weight-bearing from right to left. We are definately doing 99% of the work, but each time we do it, he holds himself up better, shifts his weight from side to side more easily and falls into the stride with less effort. He absolutely loves doing it.....we ask him when he has reached the other side of the room, "do you want to go back?" and he almost always blinks a long, emphatic yes.
The old dining room is looking more and more like a PT room every day.....with mirrors on the wall so he and we can watch what he is doing, to a 4' x 6' mat table for exercising. It is definately exciting seeing all these new changes.....each days seems to bring something new.
And then there is his home schooling, provided by Allyson Rice, his teacher. She comes 3 nights a week. When Allyson first met Cade, she wasn't sure what she would get from him. But she has moved really quickly through elementary math, right up to beginning algebra where he left off in 7th grade. They work the problems together, him answering yes or no by blinking, with remarkable accuracy. She challenges him with reading comprehension questions and he needs to either blink yes or no, or gaze at A or B on a board. There is no doubt he gets it, and I think, although the work is tedious and answering can be difficult, he enjoys the challenge. Last week, he was starting to nodd his head for yes in class session, and was more vocal than ever before. We are really encouraged and excited about Allyson's work with Cade.
It's puzzling, isn't it? What is the reason for all these changes? His final cranial surgery with his brain now fully enclosed? The baclofen pump being shut off? Our new and aggressive therapist, and all the hours of PT? I don't have an answer. I just know that I feel like we have rounded a bend, and important curve.....one that I knew was there, but so often alluded us and yet seemed within hands reach....we just could never quite get there. Well, we are getting there, and it feels good.
There are a few trouble spots, however, that we need to address. One being his back-slide on eating by mouth. The quantity and frequency have really decreased.....not sure why. He seems so nervous when he eats now....almost like he is terrified he is going to choke. So we have backed off, and are taking it slow in that area. I am looking into a feeding specialist that can help him re-train his swallow and tongue, to help get things going again.
All work and no play? Not really.....this is the second weekend in a row that Cade and Joel have travelled to Bill and Peggy Long's horse ranch in Murietta for some horse therapy. Cade really seems to enjoy riding Whiskey and we are grateful for the opportunity to get Cade on a horse, doing something he enjoys. And with the weather heating up, I have my eyes on pool therapy as soon as we can put together a program.
I am especially grateful for the latest round of people who have come into our life to help us with Cade's recovery. You know who you are......and what a difference you have made in such a short period of time. You have taught me more about brain injury and different approaches to physical therapy. You have taught me everything I know about baclofen pumps. You remind me that I am the best advocate and decision maker for Cade. You have renewed my hope and given me strength to keep going. Your love and compassion for Cade shines through you. And through all of this, we are seeing changes in Cade.....good, positive changes.....you have helped me by giving me the knowledge, tools and therapy I need to help him get better. And for this, you hold a very special place in my heart......forever.
And in all of this, we praise Him and give Him all the glory.
April 10, 2008
It's been one month since Cade's cranial reconstruction surgery and he is doing great! Check out the new photos on the photo page that were taken yesterday!
Not only does his head look great, but we see things happening, slowly but surely. He is still working on sitting, head and trunk control, weight bearing and standing....but he is doing more of it himself, with more control, with more endurance, with more understanding and response to what we are asking him to do. More consistently, he is doing on his own what we ask. "Cade, lift up your head." "Cade, look to your left." "Cade, move this arm." And then out of the blue, he'll do something, and we wonder, "was that intentional?" Like rolling over.....he just started rolling over on the mat last week, and we realized it was purposeful. So now, it's something we have added to our therapy goals...rolling over back to side, side to back, left to right, right to left. I just love it! I know it sounds so simple....but think about it.....he understands the command we are giving him, he can purposefully move his head, arm, hip and leg to roll himself over. We realized pretty quickly that this brings up a whole new set of safety issues....he can no longer be left ANYWHERE he could roll over unsafely. Before long, he'll be working on trying to get out of bed....I know Cade!!!
All in all, our therapies are going good. It does seem however, that one week we are doing good with our Speech teacher, making consistent noises upon request, blowing on the whistle, working on hitting the switch to turn the CD player on.....and then next week, he's not doing as well with that, but really doing great with physical therapy, such as the new rolling and the sit to stands he is working on (with help, of course). Experts I have talked to in brain injury say this is common. In the beginning, it is hard to multi-task and work on more than one area at a time. But as he progresses, he should show more consistency and be able to advance in more than one area at a time.
We continue to have problems with the baclofen pump, however. I can't tell you how much I hate that thing. We are seeing a consistent pattern of sometimes getting no baclofen thru the pump and then getting too much. It seems to boil down to something wrong with the catheter....maybe it is kinked, has a hole or the tip is occassionally occluded by something. The problem is there is no easy answer to finding the problem out and then what solutions there may be to fixing it. Honestly, we are hoping it isn't working at all and Cade can have it taken out. Then we would just address his muscle tone issues with oral medications and lots of therapy and strength training. THAT IS OUR PRAYER AND OUR GOAL!
The other issue we are working diligently on continues to be Cade's knees and feet. So much increased muscle tone continues to pull his knees up and feet out. It takes lots of stretching, bending, standing and massage. The balofen withdrawal in January really set us back in this area, but we are doing all we can to gain back what we have lost in range of motion.
The last thing to note is how great all of Cade's labs look. His anemia is almost gone, his general chemistry panels look great, and his endocrin numbers have improved significantly. You can see how healthy he looks in his recent pictures. He has, however, been started on human growth hormone which took a dive in January. But actually we are pleased because research shows tremendous benefit in supplementing HGH in traumatic brain injured people. Increased bone density, muscle mass and strength, cognition, concentration, memory, sleep patterns.....there are some huge benefits for Cade. So one poke a day.......
One day at a time.
March 21, 2008
Cade has done well during this past week, recovering from his bone graft reconstruction surgery. He was discharged from UCLA on Thursday, the 13th, a remarkable 3 day bounce back from surgery. On Friday, we had him bench sitting, stretching and on Saturday, he enjoyed a couple of hours at the Orange County Car Show with his dad. By Monday, Cade was stable enough to resume his home school instruction. This past week, he has been up on his feet (still with max assist), bench sitting, and back into Physical Therapy. We all agreed to give him the day off today as he is one tired boy. The plan for today is a trip to UCLA for his post-op appt with Dr. Kawamoto, and then swinging over to Azusa Pacific to pick up McKenzie for the Easter weekend home.
We have seen several improvements since the surgery....small but noticeable and consistent. His head, trunk and neck control is better. It seems as if we have been working on this forever, so it is nice to see Cade pull his head up on his own when we ask and move volitional movement left to right. And we notice more movement of both arms/hands....more on the right when we ask than the left. And he continues to be alert and responsive.
He is doing remarkably well with his home school teacher. They have developed quite a bond, and she really brings the best out of him. Solely by blinking yes and no, they have worked through some complex math stuff, including beginning algebra, fractions, percentages and long division. He stays right with her and is consistent in his answers. They are also working on reading comprehension, she reads a short story and then gives him questions he needs to answer. He definately enjoys the math more. She is working on having him hold a large magic marker, and she leads him arm around on the dry erase board. His heavy muscle tone makes that difficult for him.
The downside continues to be his spasticity and high muscle tone. It always seems to dictate what, how and how well he can do something. We still have no answers on the pump, its functioning, or what we are going to do about it. We had agreed to get the cranial surgery done first, and we are now putting a plan together for diagnosing the problem. It's just not that easy. Everyone has a different opinion on what and how to do that.....I have files and files of imformation on the pump, but we still have not clearly decided what we are doing about it.
The other downside we have noticed since the surgery is depression. We have dealt with this some in the past, but it is more obvious to us now, and has even begun to interupt the effort he is putting into his therapies and school work. I can't imagine how frustrating it is for him. Since January, he has been poked, prodded, man-handled by therapists and doctors; and is constantly being asked to "perform".....blink yes/no, move that, hold up your head, eat this, chew that.....tasks that are so simple in nature to all of us...but painstakingly hard for Cade. And then he has to sit around and listen to everyone talk about how he did, what he should do next, what he did well, what he did poorly. It is no wonder than he is depressed and somedays just doesn't want to work and just be left alone. I am convinced now that the frequent naps he falls into are just an escape from the horror of his daily life. My prayer is every day for God to give Cade some of his life back... the joy and happiness that I think he so deserves to have.
Cade's schedule is filling up fast with physical, occupational and speech therapy. Work, work, work....the things that Cade needs to improve. Stimulation, stimulation, stimulation. Physical, mental, spiritual, auditory, visual, tactile, taste, and hopefully, some fun thrown in there. A big job, that's for sure.
Just throwing it out there, we are looking for help, people experienced in PT and OT, people who might be looking for part-time work with Cade. If anyone knows anyone.
Other than that, we are looking to God for the answers to our big problems. And we are working out tails off trying to get Cade well. We need some divine intervention. Your prayers help, too.
March 13, 2008
Thursday, 10:30 am.....Cade is discharged to home! We are packing up as I write this, and should be home by 3:00.
We were really caught by surprise by his early discharge but we are ready and anxious to get out of here! Everything looks great......his vitals are stable and all of his labs look good. He had a blood transfusion yesterday to bring up his iron levels and that has perked him up some. He is still tired, somewhat lethargic and still in a resting/recovery mode. But hey.....he is only 3 days out of a major surgery!!
We are so pleased that all has gone so well. Thanking you again and again for your continued prayers.
March 11, 2008
Yesterday was a long and tiring day for everyone. Cade went into surgery at 12:45, about two hours later than previously scheduled. We got a call about 6:00 pm from the doctors saying they were finishing up and Cade would be going to recovery soon. A large portion of Cade's left skull was successfully grafted with bone, covering from his ear, up to his crown and back about 4 inches. The doctors were pleased with the results of the initial bone graft done on September 10, the bone is healthy and has intergrated well with his existing bone. Yesterdays bone graft surgery was more challenging for them, however, as they had a larger area to cover and more bone edges to graft to. A small portion of his skull, back by his crown, was difficult to graft to, and the decision was made to allow a small "dip" there, rather than jeopordize the previous graft. It will not be noticeable with hair and will not present any future problems. Overall, the surgery was very successful, giving Cade complete skull coverage, and he is recovering well.
Cade was moved from recovery to ICU about 9:00 pm. He slept well last night with the help of pain medications. This morning he has woken up a few times, obviously feeling pain and discomfort. He has responded well to us, but we are allowing him to sleep and rest. His vital signs and numbers are good. He has, however, as to be expected, lost some blood during the surgery, and if his hemoglobin and hematacrit don't improve, they will probably give him a unit or two of blood.
It's been less than 24 hours, and so far things are going well. However, we are not out of the woods yet. We are praying that he does not get an infection, that the shunt continues to work properly, that the bone graft takes and Cade's recovery from this surgery over the next couple of weeks is smooth, swift and trouble-free. Of course, our larger prayer is that this surgery will spur a greater recovery for Cade, leading to purposeful movement and speech. And that Cade will find joy, happiness and a greater quality of life. This is what we pray for and in my heart of hearts, I don't think this is too much to ask for. I think this is what he deserves. And this is what we are fighting for.....every day, every step of the way.
We can't even begin to express our gratefulness for those who are helping us to achieve our goals for Cade. His doctors, nurses, therapists, friends, family and prayer warriers......thank you from the bottom of our hearts.
I will post another update as soon as possible as Cade continues to improve.
March 9, 2008
Our big day tomorrow, and at 9:30 pm, we are all still up, even Cade. We are as ready as we can be. The van is packed, we think we have done it all. It was a restful weekend of sorts. Cade spent yesterday afternoon at the beach with Joel and his Uncle Jeff who drove down from Bass Lake to be with us. Today, we lounged in the courtyard, enjoying the warm sun, visiting with McKenzie who came home for the day. We buzzed the little guys head today in preparation for tomorrow. His cheeks are red from his day at the beach. I think he looks great. So alert, sadly he is anxious and worried about all the talk about tomorrow.
We will keep you up to day via the website. His surgery is at 10:30 am, we anticipate him being in recovery about 4:30, up to ICU by 7:00 pm. It will be a long day for all. Signing off, heading to bed, although it will be a restless night.
Ever grateful for your prayers and thoughts.
February 29, 2008
We are on for the March 10th cranial surgery. All indications are that Cade is medically stable enough for the surgery, in spite of such increased muscle tone. The baclofen issues will have to wait until post recovery.
Cade is so "present", we have enjoyed his increased levels of alertness we have seen over the past few weeks. Cade is responding and interacting well with his school teacher who seems to step up his lessons every time she sees him.
Our prayers are to make it through these next 10 days with no issues, a successful surgery, smooth recovery.....and then on to a bigger and better recovery.
February 24, 2008
Nothing new to report. Cade continues to be alert and responsive most of the day, but his muscle spasticity is a huge problem. We are concentrating only on range of motion, short periods of standing and still having a really difficult time even sitting up. So FRUSTRATING! The past week was spent getting numerous opinions from the team doctors, all who seem to have a slightly, or major, difference of opinions. I have spent some time outlining these thoughts under the next page, headlined Thoughts......
February 20, 2008
It's been sort of a mixed bag here these last two weeks. In some areas, Cade has shown real improvement, in other areas, he continues to lag behind due to the recent fiasco with the baclofen pump. Let me explain.
The good news is that Cade no longer has temperature instability, heavy sweating, high blood pressue or heart rate. I think that no one is quite sure if these symptoms were a result of the dramatic baclofen withdrawal or just his autonomic dysfunction kicking in. Either way, it has subsided and he is much more comfortable. In addition, we are really pleased to see Cade so alert and responsive. His school teacher has been brought back in and he is responding well to her and his lessons. Much of her preliminary work with Cade is helping him with his visual orientation. We know that he still has a high degree of intelligence, but we are working on using his eyes to differentiate numbers, letters, names, etc. Also, he is back to eating by mouth and has shown improvement in his oral motor skills. So, in so many ways, Cade has shown pretty quick improvement from his recent medical setback.
But the increased muscle tone is a huge problem. All leading to the baclofen pump and whether it is working correctly or not. Our doctor at UCLA wants to just ride this out but honestly, I think that is so much easier said than done. At this time, it is all we can do to keep him comfortable, let alone try to work through PT. We have only been able to concentrate on range of motion and stretching. Cade had a massage today which I hope will help decrease his muscle tone. So difficult to control, however, as the spasticity and tone comes from his brain.
Less than 3 weeks away, our focus continues to be the cranial reconstruction surgery on March 10th. Most of the doctors agree that the baclofen pump problems are secondary to getting Cade's skull put back together. After recovery from the surgery we will take a more aggressive look at the baclofen pump. Our hope is that we can address Cade's spasticity with oral medications and get rid of the pump once and for all.
That's about all I have time for right now. I will update next week.
February 9, 2008
Cade is coming back to us, slowly each day, after a month of complications with his baclofen pump. Today, he was out of bed, back to practicing sitting and even some standing with assistance. But the best yet......he is responding to us again with yes/no blinks and vocalizations. He is back with us, interacting with his environment, and working on getting past this major setback.
It has been one month today since Cade experienced his complications with his baclofen pump. Cade has been home since Monday and the road to recovery has continued to be rocky. But I do have to say, relatively speaking, today has been a good day. No fever, less spasticity and sweating......Cade even was able to sit with assistance for about a half hour today and then go into standing position with assist for about 20 minuites. As I have said before, 3 different hospitals, over 17 different doctors, 21 days inpatient, over 11 days in Pediatric Intensive Care....and the jury is still out of what exactly the problem is. We are sure that the problem lies with the baclofen pump.....but we still need to determine if it is medicine in the pump, the pump mechanics itself or the cathetor delivery system. It will take numerous diagnositic tests and several more weeks before we know the exact source of the problem. We are working closely with both the doctors at UCLA and at Casa to determine what is the best determining factor regarding the change in Cade's status. We want to get off the baclofen pump completely and rely on oral medications instead, but it is not as simple as that. We are putting our anger aside for now and focusing on what we must do to help move Cade ahead.
In the meantime, we continue to manage Cade's immediate pain and spasticity needs and try to keep him comfortable. Honestly, this medical world we live in works way too slow for us. We want Cade's pump evaluated and fixed today......not next week or the week after. We are continuing to keep out sights on March 10th reconstruction surgery, but we know that fixing Cade's baclofen pump issues is also paramount.
We have an entire team at UCLA that is working hard on finding the right solution and plan for revising Cade's baclofen pump and cathetor system. It is a daunting task to put the team members together, coordinate their responses and keep Cade in the loop.......but I think we are doing it and getting the services and responses we need.
We are all extremely grateful to be home, however with over 5 IV antibiotic infusions a day, in addition to food, water and regular medications and range of motion, everyone continues to be stretched thin. It is really powerful to report today that for the first time in a month Cade was on his feet today and standing with assistance. He did absolutely great! And his sitting is coming back as well, in spite of his increased spasticity. We continue to be awed by his willingness to move ahead and get better, despite the pain and setbacks. He is truly our hero.
I am so fatigued that I can barely get the words on paper. We will be back with updates as early as next week when we get more information from the doctors. Thank you for your continued prayers for Cade and our family.
Super Bowl Sunday 2008
Things have been improving here slowly. Friday and Saturday were relatively stable days for Cade with no fever, regular vital signs and little sweating. He has been resting well and sleeping well at night. Today was just as good, but a little bit more fatigued and just a slightly elevated temperature this evening.
The doctors seem to all agree that Cade experienced a severe and prolonged baclofen withdrawal. He appears to have responded well to the change in medication in his pump although he is still quite stiff. The doctors say he needs to just ride these leftover withdrawal symptoms out and he will continue to slowly improve and return to his original baseline. Everyone also agrees that March 10th is a realistic date to shoot for Cade's bone graft surgery. They want us to get him home, keep him well, get him rested and come back for the bone graft sugery March 10th. We agree that should be the plan. A setback of major proportions with lots of unnecessary suffering for Cade, but thankfully nothing with long lasting implications. We do, however, plan on finding out exactly what went wrong and how....as soon as we have the time and energy to investigate this.
The plan is for a discharge tomorrow morning, unless we have a huge temperature spike tonight. Otherwise, Cade will be discharged in the morning and home resting by mid-day. The snag at this point is the lack of a nurse to help for the first couple of days home, as Cade's regular nurse had to fly back home for a family funeral. I am also concerned that Cade will continue with the antibiotic transfusions three times a day until Feb. 15th.....the insurance company does not want to provide a nurse for this and expects that the family will do it. Our latest battle..... Other than that, we just have alot of work cut out for us to get Cade's range of motion back and to keep him stretched and massaged. We are really looking forward to getting him back in the Quadraciser machine he likes so much. And standing on his feet again.
If there is any silver lining in this latest dark cloud it is the fact we have added two really remarkable teams to aid in Cade's recovery. The orthopedic team here at UCLA was very impressive and we were so pleased to have consulted with Dr. Christopher Giza, a Pediatric Neurologist who specializes in head trauma. Both teams have given us tremendous insight and future planning in dealing with some of the problems Cade has been facing. Interestingly, everyone agrees that the March 10th bone reconstruction is a crucial turning point in Cade's recovery.....his head needs to be fully enclosed by bone. So, although the date was delayed, we are staying focused on this next important step.
So after 21 total days in three different hospitals since January 1st, we are going home to where we belong. It has been a long and extremely difficult month, but we see the light at the end of the tunnel. Thank you to everyone for your never-ending love, prayers and support. I haven't been able to return all the phone calls or messages....I apologize and want you to know how comforting it has been to have so many people pulling for us. With all our love, Joel, Lisa, McKenzie and Cade
February 1, 2008
The rollercoaster continues here at UCLA. On Wednesday, Cade was calm and resting....no fever, no sweating, stable vital signs and he rested well that night. Yesterday, he had a fever of 101 to 102 all day, despite Tylenol and Motrin, and he sweated profusely with high heart rate and blood pressure. It was a miserable day. The medications given didn't seem to touch him. It was a trying day for everyone.....not knowing what is triggering these events, not being able to successfully treat his symptoms and feeling so helpless to end his suffering. About 10:00 pm, the cycle ended and Cade rested fairly well all night. Today is Friday, Feb. 1st, about 11:00 am and the day has started out well. He is awake, calm with no fever and stable vital signs. He has napped on and off all morning, but is noisy with vocal sounds when he wakes up.
Several different teams have been involved with Cade since we got here last week. The consesus seems to be that there is no infection (even if there was he is being fully covered by the antibiotic "bomb" vancomycin which kills everything), the baclofen pump is working correctly and Cade has responded well to the change in the concentration of the medicine, and that his VP shunt is working. That continues to leave everyone wondering what is going on. Cade has always been prone to episodes of "autonomic dysfunction" where his injury has affected his body's ability to regulate temperature, blood pressure and heart rate when he is under stress. So many are saying these past few days are the tail-end of the baclofen withdrawal, combined with autonomic dysfunction.
We have decided to consult the Neurology team to see what they think (autonomic dysfunction falls under their expertise) and they will be rounding on him today. We also think he should have another CT scan of the brain just to completely rule out any problems there. We had one on the 11th of January, but we think a comparison CT would be helpful.
That's about it for now from a medical standpoint. I am hoping that Neurology can shed a light on these reocurring episodes. I will update again over the weekend when we know more. Looking like we are here for several more days until Cade can show longer lasting periods of stability. Til then....
January 30, 2008
Cade continues to have episodes of fever, sweating, high heart rate and blood pressure. Even the doctors seem baffled. They seem to feel that somehow the baclofen medicine is involved and that his body is still reacting to the results of the withdrawal. They continue to treat his symptoms aggressively, but at the same time they are looking for other reasons for his episodes. Joel and I, too, are unsure what is going on and are desperately looking for answers to what has gone on these past three weeks. We are all physically, emotionally and spiritually weary. I can't even imagine what it has been like for Cade.
Cade had a PIC line placed yesterday in his arm. It is a longer lasting type of IV used for medicines, etc. He will come home on a strong antibiotic for two more weeks. Poor guy is so wiped out from these past two weeks and his continuing fevers don't help.
As always, we are pleading for your prayers that this nightmare will end for Cade and that he will be back home resting comfortably as soon as possible. And your continuing prayers for his overall recovery of function and speech.
January 27, 2008
Cade has been in the Pediatric Intensive Care Unit here at UCLA for four days, and what a battefield it has been. He has spent the past four days with fevers, sweating, dehydration, tremors and intense muscle rigidity. Everyone has been baffled where this is all coming from, but the UCLA team has made some significant strides in these past two days trying to determine what the problem is. I am actually hesitant about what to write here, as the jury is still out. Here is what has gone on these past few days.
When Cade was transferred here to UCLA, he was immediately admitted to ICU and the team's first defense was to get control of his symptoms. Bring down the fever with a cooling blanket, hydrate him with IV fluids, give him pain and muscle relaxing medications. Then came the task of running all the necessary tests to find the problem. We spent the first two days looking under every rock for some source of infection. This had already been done at CHOC/Mission but it was necessary to repeat all the tests again. As of tonight, all his tests for infection have come back negative (although cultures really need to grow for a full five days before the report is conclusively negative). Neurosurgery was then called in and again, they reported that the shunt was operating properly and his CT scan showed nothing unusual. Then Orthopedics was brought in to investigate his baclofen pump. Some of the doctors have felt that his symptoms looked distinctly like baclofen withdrawal. Cade's symptoms have abated significantly over the past 24 hours after he was given additional baclofen, leading everyone to believe that what Cade experienced over the past two weeks was baclofen withdrawal. He has not had a fever, sweating, tremors or high heart rate or blood pressure issues in 24 hours. It is still too soon to say we have found the problem, but all indicators seem to be pointing to a problem with the baclofen pump...either with the pump itself or the drug being used in the pump. Tomorrow, they will continue down their road of investigating the effectiveness of the pump and we will have a better understanding of what has gone on over the past two weeks.
As the diagnosis has not yet been finalized, we really don't want to speculate here about what went wrong and how it went wrong. This is neither the time or the place to vent our feelings about how this happened. We are all exhausted from these past two weeks....too exhausted to even begin to think logically about what went wrong. I know that day will come when we have the answers we need. But tonight, we are grateful that Cade is resting peacefully with relatively normal vital signs. We are grateful for the dedicated doctors here at UCLA who never gave up trying and to the incredible PICU team at CHOC/Mission for their incredible care. Certainly, we have not fully identified the problem, but we have narrowed the field and feel we are on the right track. We are not out of the woods yet, and sadly, we have learned through experience that things can turn in either direction rather quickly, without any warning. I think has been the hardest for us.
After midnight on Sunday night, I am sleeping on a hospital chair folded into a bed next to Cade. He has been moved to the Pediatric Med/Surg floor, but he is still being followed closely by the ICU team, Orthopedics, Neurosurgery and General Pediatrics. I desperately need some sleep....I know it will be another long week, and hopefully we will be home before the weekend.
Thank you to everyone for your postings on Cade's website, your calls, prayers, support and concern. We are making through this with your help. With our love, Joel and Lisa
January 24, 2008
Cade was re-admitted to CHOC/Mission Hospital last night with dramatically increased symptoms of infection. We have decided to transfer him to UCLA for further investigation of his VP shunt and baclofen pump. We are sitting here at CHOC waiting for the admittance and transfer process. Cade is very sick, we still have not been able to identify the cause. We will keep you update as we know more. We appreciate your continued prayers.
January 19,2007
8:30 pm Friday night, Cade is asleep in his bed here at home. He got discharged today about noon. Overall his medical status looks good, no reason to keep him. The entire staff at Ped. Intensive Care Unit at Childrens Hospital at Mission did an incredible job taking care of Cade. We just think the world of Dr. Goodman and his PICU staff. As for Cade, he is at the tail end of a very miserable flu virus he caught. He is recovering slowly, definately better today and I know that he will be better tomorrow. He is sleeping peacefully right now.....he hasn't done that in days.
When something like this happens, it is back to the basics of living.....adequate food, water, lots of rest and some range of motion to keep things working. You don't think about moving ahead, you think about staying stable, no more hiccups, no more bumps in the road. That is what the next few days or more hold.
I can't explain to what a disappointment this illness has been. Without it, we would have been counting down to his final bone graft surgery next week, putting all the people in line for his new therapies with the school district and CCS...Cade was starting to move ahead.....last week was the best we had ever seen. On the bright side, Cade's bone graft surgery has been rescheduled for March 10th, our new therapists are ready to jump in and start working as soon as Cade is ready.....the virus is gone, he is home, and recovering. We praise Him for all these blessings.
This is our first night home in days, and we need to sign off and get some rest. Joel and I are eternally grateful for all of your prayers for Cade and his recovery. We feel your love and support through your calls, your messages left on Cade's website and our our home phone. We apologize we aren't always able to return your call or at times, we are not able to welcome your visit, but we want you to know that we appreciate your love and support and we also pray for you and the trials you face. We know that each of us face our own battles in this world and we all need the grace of God.
I just know that our next update will tell of new things Cade is doing and how well he is progressing. I just know it. Until then...................
January 16, 2008
Today was about the same as yesterday. It is confusing, all of his labs are back to near normal levels, his fever has been gone almost 48 hours, seizure activity has been ruled out, he is off supplemental oxygen...and yet, Cade is still so out of it. It is really difficult to see him so non-responsive to us. And he has been doing this shaking sort of thing. That's why they thought he might be having seizures, but I think that has been ruled out now too. I think the doctors are sort of baffled too, because all his numbers and tests are nearly normal now. The only explanation seems to be that he is still recovering for the flu and hopefully he will be back to his old self in several more days. Granted, he has been through alot in one weeks time.....and it will probably take several weeks for him to get back to baseline.
The reassuring thing is that the doctors don't seem as concerned as we are. Of course they read numbers and we're looking to get our old Cade to where he was. The discussion has been that if all continues to look non-threatening.....out of it or not.....Cade will be discharged to home on Friday or so. Probably not a bad idea as there are so many sick kids there and we don't need to catch something else.
I can't seem to get an internet connection in the hospital, and as of tomorrow, we probably won't come back home until Cade is discharged this weekend. As soon as possible, I will post another update.
Keep Cade in your prayers. With love, Joel and Lisa
January 15, 2008
Cade is doing better today. He has gone 24 hours without a fever, his sweating and shaking has stopped. Bacterial infection has been pretty much ruled out, unless his fever comes back, then we need to consult with the Infectious Disease doctors. It pretty much continues to look like a viral infection that ran wild. His labs are starting to look more normal, but he is completely wiped out. He appears to have turned the corner on this, and we are praying that tomorrow is a another better day.
We are all exhausted. It is amazing how just sitting around in the Ped. Intensive Care unit can just take everything out of you.
Cade has been reschedule for March 10th for his bone graft surgery. That give us a full 6 weeks to recover and regroup.
Thanks for your prayers. They really make a difference.
January 14, 2008
I am sorry to let you know that Cade is in the Intensive Care Unit at CHOC at Mission Hospital in Mission Viejo. After one of the best weeks Cade has ever had, doing all sorts of new things, he started vomitting on Thursday night and went into full fledged flu-like symptoms by Friday. We were fairly sure it was just the flu, but he was so, so sick....we were definately concerned, and worried about whether it had something to do with his shunt.
A CT scan of the brain showed the shunt is working fine and that his brain showed "significant improvement" over his last scan in March. We were thrilled to hear that, but the dilemna remained....what is wrong with Cade? After bouncing around to a couple of different doctors and hospitals, we chose to have him admitted to CHOC at Mission, under the care of Dr. Gary Goodman, pediatric intensivist. He took care of Cade after his trauma unit stay at Western Medical Center and knows alot about him. And what a diagnostician.....he is looking under every rock trying to find what he is calling a "non-specific infection". Most of the major bacterial stuff has been ruled out.....he is leaning toward one of many different viruses that are out there this time of year. Some of those tests should be back tomorrow.
All in all, Cade has gotten hit hard with whatever it is and is pretty sick. The vomitting has stopped, but he has fevers, chills, sweats and is pretty out of it. We need to let it run its course, support Cade medically with his needs and focus on gettig him home as soon as possible. Joel and I are pretty devastated by the turn of events, and to make matters worse, our January 28th surgery is postponed due to Cade's illness.
The new plan is to get Cade well, discharged by the weekend and back home, work on getting well, and then rescheduling the bone graft surgery for sometime in March.
That's it for now. Please know that at this time visitors are not appropriate, and it difficult to answer lots of calls. We appreciate your prayers and support for a quick recovery and return trip home.
December 19, 2007
We are back from the Dominican Republic and all went well with Cade's third stem cell treatment. A last minute glitch, however, had us all scrambling to make it happen. Joel has been tolerating a hernia for the past year, but two days before we were to leave, he experienced a tremendous amount of pain and was advised by his physician (again) to have surgery to repair it as soon as possible. The doctor said leaving the country was unadvisable and lifting anything was out of the question. So, a difficult decision was reached.....McKenzie would take Joel's place and travel to the DR with Cade and I on Thursday and Joel would have surgery on Friday morning. Needless to say, the stress level was very high with everyone. But we pulled it off.....Joel's surgery went very well and McKenzie and I took care of getting Cade to and from the Dominican Republic....four different flights.....there and back in four days. McKenzie was especially exhausted as she just finished up her finals from her first semester at college. We couldn't have done it without her.....and it meant so much to us that she was so willing to step to the plate when we needed her. Joel is recovering fine from the surgery and in his usual fashion is putting in way to many hours at the office trying to finish up before Christmas. He can not lift anything or do anything strenuous for 6 weeks, so having McKenzie home until January will help alot with Cade. We are so, so grateful to our many friends that helped us last week, from our cousin Doug and dear friend Ed who took us to and from LAX, to our neighbors an
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