Memorial Service

For those of you who can not attend the service, the service will be broadcasted on this blogsite... check the blog on Saturday for the link and etc...

So many of you have been such a big part of this journey, many whom we have never met... we would love for you to join us in the Celebration of David's Life no matter where you are...

In Memoriam

For those of you who have asked:

In lieu of flowers we are asking for donations be made to the benefit fund on the blogsite. We will be making a donation in David's name to Stanford in the field of Cardiology/Heart Transplant Research.

Thank you

At Home With Jesus

Today at 12:15 pm our sweet boy, David Allen Kennedy, went home to be with the Lord.

His body just could not take the trauma and all of his organs started to fail.

It has been a very hard day... please keep our family in your prayers.

For service information please contact a family member or us by email.

Side Effects

Some of the side effects of being on the Bypass Machine for too long are starting to rear their ugly face...

Over the night and morning Dave started bleeding from the leg which the bypass is hooked up too, because of the blood loss they started having to do transfusions. They can't do transfusions for too long so this morning they did an in room surgery/procedure to start repairing that damage. That damage is now under control, but his kidneys are now starting to fail and they have started dialysis.

We just talked to the doctors and they have told us that David is failing and fast, he is not responding to the measures they are taking, and the next 24 hours will be critical. He is less likely to handle a transplant today then he was yesterday, and tomorrow the chances will be very slim.

Today we need a heart... today.

Back at Stanford

For those of you who don't know....

On December 22nd at 4am David came into our bedroom and woke us up complaining of swelling and shortness of breath. Shortly after that he began vomiting and said he needed to go to the ER. Doug drove him to the nearest ER while I arranged things with the kids and my job. While at the ER in Stockton, Ca David was told he was in heart failure and Stanford sent a helicopter and life flighted him back.

We arrived shortly after the helicopter and Dave was in grave condition.The doctors told us he was in severe rejection and he needed to be repaired right away. They prepped him for a biopsy to see how bad the rejection was. While in the room Davids heart stopped and they brought him back fairly quickly. While in the biopsy room he coded during the procedure and the team of doctors did chest compressions for 63 minutes before deciding to put him on a heart and lung bypass machine.

He has currently been on the bypass and in a medically induced coma since Tuesday night at 9pm. Today we were told that his heart is too damaged to repair itself and retransplantation is the only option. They have relisted him at 1A severe status as of this morning. The chances are slim that he will live to receive a new heart as the doctors only want to keep the machine going for a total of 5 days, survival rate and other complications become worse after that point. Right now he does have brain function, and his other organs show no damage.

So our prayers are this, a new heart quickly, for him to be able to survive the surgery as he is so weak, and for him to recover after transplant, he is much weaker this time around.

At this time he is not awake and as I said before in a medically induced coma, for his own protection. Please pray for us, love us, and do not judge us. We love all of you, your continued support means so much to us.

A New Beginning

Hello all!

I just wanted to post an update to all of you that still check out David's Journey... even though we have stopped blogging on this site we all still think of each and everyone of you always and what your support has meant to us this past year.

For more updates please feel free to go to our family blog, where I will posting from now on. http://www.familyofkennedys.blogspot.com/

In Christ,
Bronwyn and Family

A video of David's Journey

Adjustments....

I logged onto the blog today to finally update because it has been so long since I have! I feel badly because so many people have emailed me and called me for updates and I have been so bad about doing that!

So moving on.... it has been quite a month of adjustments for all of us! Starting with David! He is doing great by the way! I am so proud of him and this new leash on life that he has taken by the hold. He is feeling good and has had no medical upsets since July. As a matter of fact as I type this I am sitting in the Stanford waiting room with him at his 6 month post transplant check up. He is still in San Diego going through the process of being retired from the military, and that is taking a long time. He is enjoying his time there and is passing the time catching up with his old ship mates. He is very anxious to get home though, and is looking forward to that day. He has really taken a hold of this new life with a new outlook, and we are so proud of him. He has started making some great goals for the future. He hopes to start college in January and he is just started some early training for the World Transplant Games. He really wants to compete in the 2011 games in Sweden! Thanks Joe for inspiring him!

As for the rest of us, it has been anything but easy to come back home and get back into the old routine. We love being together as a family again, but that did not come without some adjusting! Doug and I lived apart from each other for 8 months! That is a long time, so it has almost been like dating again, or early marriage days! Which has its good points and bad! The kids are loving me being home, and school started for them a couple of weeks ago. It has been hard for me to be home all alone after having a constant companion for the last 8 months, but in a lot of ways it has been good for me as well. I am finally starting to really grieve for all that we did lose, but at the same time use the quiet time for self reflection and appreciation for all that God has given us.

With all that being said, I have to say that the transplant was the easy part. It is the after that has been the hardest to deal with for all of us. I think we all expected to wake up on March 12th the day after transplant and just have life be totally normal. That has so not been the case, it has been hard for each one of us. Somedays it is just easier to smile and say everything is ok, then it is to really relay the truth. I just ask for constant prayers that the Lord will continue to protect and love our family.

Again, we are all so grateful for everything everyone has done for us, even if it wasn't ever said out loud, those of you who really know us, and really know our hearts know how appreciative we are of everything you have done for us.

Out of the hospital

David called me around 9pm last night to tell me he was back in his room and had been discharged. He sees the cardiologist at 1pm today and I am anxious to hear what he has to say to him. He sounded good last night and in good spirits. Doug will arrive tomorrow night and we will get up early and head to San Diego on Friday morning to spend the weekend with him. Please pray for all of our hearts and for the Lord to be present because we are going to have a serious talk with our son...

Big sigh...

Apparently David is supposed to be discharged today from the hospital, but as of 7pm he still hadn't been... his white count and other blood tests were elevating at a good pace so they feel comfortable letting him go back to his room with some conditions. They are still running tests and waiting for test results for what could have dropped his white count and other items, but we have not gotten those results back yet. It could have been something to do with his medicines as well so they have messed with those and have lowered and changed some of the medications around.

Doug gets to my mom's house on Thursday night and we will all leave again on Friday morning to be down in San Diego with him this weekend. Doug wants to meet and talk to some of the staff down there and we all want to sit down with David and have a serious talk with him about his future and managing his care from now on. It is imperative that he gets a handle on it and stops fighting the changes that this new heart has brought to him. I know through God's grace it will happen, he has an awesome support system around him to help him and guide him.

July 20th, 2009

David will be in the hospital for a few more days... his white count went up last night but then in went way back down this afternoon. Stanford and the Navy hospital just does not feel comfortable with him leaving the hospital until the white count gets under control or until they have some answers. There are a lot of things that it could be and they aren't ruling out anything at this time. In some ways it feels like we are back to square one but on the upside he does have that awesome heart on his side this time.

I am hoping this will be a humbling experience for him as he sits there by himself in that hospital room. He has taken a lot for granted these past few months and I am hoping this is the reality check that he has so desperately needed. It is killing me not being by his side right now, and I will probably go down there by weeks end, but I also strongly feel that he needs to fight this fight in a different way this time. He knows that I am there to support him in any way that he needs, but he is having to do this in a different way this time.

As always I will keep the blog going as we get new information....

We do have a phone number for him, but we have asked that only people call him that we give the number to. If you have taken it upon yourself to "look" him up and call him please don't. We are getting back into a situation were too many people are calling him.

Back in the hospital....

I need to give you an update on David, I will do this in the best "time" frame that I know so you all are informed and know how to pray.

On Thursday at his appointment with the new doctor in San Diego David admitted to not feeling 100% earlier in the week, but he was feeling better at that time. The doctor said he wanted to run some basic blood tests so he could get a better feel of Davids condition and to see if there was anything going on because David had not been feeling well. When I say not feeling well it means he was light headed, dizzy, no appetite, lethargic, and just yucky feeling.

I saw David on Friday afternoon at noon and hugged him goodbye, we parted ways at that point. The Navy and Bonnie (Stanfords Nurse) called me at 2:30pm and told me that they needed to get a hold of David ASAP because they had just gotten the results of his blood work back and his white count had dropped significantly and to the point that they were very worried and wanted to run more tests. Apparently with his white count being that low he was at an extreme risk for infection.

Yesterday at 2pm they admitted David back into the hospital because overnight his blood count had once again dropped significantly and they were very worried about what could be going on and the fact that he could be at a high risk of exposure and infection. He is in an isolated room and I saw him finally last night at around 10pm. They are doing blood work continually and still do not have an answer. Yesterday they gave him a shot to fool his body into making white blood cells. This afternoon they did a chest xray and saw that he still has the spot on the lung that he has had since right after transplant. So because of that they also did a CT SCAN of his lungs to compare to the last one that they did at Stanford.

Once again my life is a waiting game, I came back to my moms today to wait this part out. Once we know what we are dealing with I will make some decisions from there. We really need prayers here, one for answers, and also David needs prayers so that he can start dealing with his condition in a more healthy way. He is in both denial and anger right now, and it is not healthy at all.

Going Home.....

Yesterday at 3:15pm we were given the final ok to go home.... I can hardly believe it.... I am totally stunned.... the day has finally arrived. Doug drove up last night after work to help us pack up the "homtel" and we should be leaving this afternoon to go home for good. It is very bittersweet. Don't get me wrong, I am VERY ready and excited to move back home, but a lot has happened to me and my family in this little town, this little homtel, and this little part of the world these past 7 months. That is a lot to finally walk away from. Saying goodbye to people like Bonnie yesterday and Paula were so hard on me. I know we will see Bonnie for our monthly visits but not having the security of her right down the road is a hard thing to let go of. And Paula, now that one was so hard for me personally, that woman sat by my side and held my hand during some of my darkest moments. She has been there since day one of this incredible journey and has seen it all with us. She has cried with us, laughed with us, and gotten mad with us. It was so incredibly hard to hug her yesterday and tell her goodbye, so I know that she reads the blog everyday.... So I am blowing you kisses Paula, you have no idea how much you have meant to me and my boy.

I laid awake until 4am last night replaying all of the events that have happened to us in these last 7 months and was once again shocked. I still have a hard time comprehending that David had a heart transplant, or that he was as sick as he was. I started thinking about the first phone call, the time in Hawaii, our first days in Stanford, his little boy laughs when he was trying to keep himself amused in the hospital, his weak and frail body, the day of the Jarvik surgery, the ICU stay, and most of all the day we got the call and the time we spent waiting for him during the heart transplant surgery. I started thinking about all the people we have met in person as well as over the Internet that have made this journey possible to handle. I am still dumbfounded of the overwhelming support we have gotten and the help and love we have received. It has proven to me that the majority of people in this world are good and loving, it has restored my faith in Americans and what we stand for.

Some people have told me that they are afraid that I have lost my identity through this whole process, and at first I was scared that could be very true. But then I really started thinking about it and I think that is incredibly wrong. I really believe that I have learned more about myself and who I am through this then I ever did before. I have regained such a strength in our powerful God, and I have learned that with him nothing is impossible. With that behind me I can do anything in this world and not be afraid. I strongly know that I am a better Christian, Wife, and most importantly Mother because of all this. I have gained confidence, self control, over whelming love, and peace. I have not lost my identity I believe that I have found it through this... it makes me shudder to think that might be one of the reasons why we went through this.

Many people have been irritated with me because a lot of the time I don't write about Dave in depth on these blogs... well I have news for you... this journey didn't just involve David. It involved his dad, me, and most importantly his little brother and sister. We all went through this with him and were affected by it, not just him. This journey threw our lives upside down these last 7 months, and I am a proud mama to sit here and say we survived it. Lots of marriages and families don't survive it, but we have Christ in our corner and that is why we did. Yes, this thing happened to David physically but the aftershocks reached out to the whole family... please bear that in mind.

On that note, David is doing really well. I have full confidence that he will handle this on his own and that he will manage his health care in a way that he knows he needs to. That being said, I also know that because he is 20 he will stumble and he will fall, but who hasn't. The reality of it is when he stumbles and falls it might be enough of a fall to make him sick again, but that is on David and how he wants to handle it. He still has high blood pressure and is now on an Ace Inhibitor as well as all of the blood pressure medicine and he still has high blood sugar so he is checking his sugar levels 4x a day and on a high dose of medicine for that. BUT, in our last clinic visit we got him off of 4 meds and rearranged his schedule so he is only taking meds 2x a day instead of 4. This was very good news and will make things a little bit easier for him to handle when he leaves here.

He has to report to San Diego on July 15th, I will be taking him down there, going to his first appt with him, and helping him get settled, then I will leave. Won't blog about how hard that will be right now.... They are telling us he will only have to be in San Diego for about 30 days, so we are praying that is true. He is anxious to come home and start a life again. We are going to do every thing in our power to add on to our house so that he has a little privacy and a place of his own to go too, so we ask for prayers in that regard. That it can be done swiftly, nicely, and with volunteer help and donations. Right now Dave plans on starting Junior College and wants to be a Radiology Technician.....

My son was dying 7 months ago.... I know without a doubt that his days on this earth were numbered. I also know without a doubt that my GREAT BIG GOD saved him, that the power of Prayer saved him, and the amount of people that loved him saved him. God chose David to save, that is almost to big for me to handle sometimes. I know it is too big for Dave to handle. There is something big in store for my boy... I just know it..... I love him so very much, my heart aches with love for him. Every single day I look at him and I am filled with love and I am reminded how close I came to losing him and it makes me want to hold him tight and never let go. Thank you.... all of you who prayed for us, held our hands in waiting rooms, hugged us, loved us, supported us in so many ways, and thank you Jesus for saving my boy.....

The Voice of the Lord

So, I have to admit for whatever reason the past few days I have been feeling very spiritually challenged. Not because of the people we are around, because these people are the most God loving people I have ever met, and this household radiates with God's love. But personally I am struggling with an internal battle that I just can't put my finger on. I have my suspicions as to what is causing it, but because I do not want to offend any one, especially my son, I will leave those suspicions to myself. I will say I am feeling very "dishonored" in the biblical sense of parenthood and I have been down on my knees all morning asking the Lord to help resolve those feelings.

A long time ago in a bible study that I attended at our old church one of the older woman told us that she read Psalms every morning. She had this little system that she read them by that correlated with the calendar, and I always thought that was so neat. She had told us that by doing this she was really amazed at how that particular Psalm would fit her day or how it would stay in her mind all day in preparedness for what was going to happen to her. Although I don't do this system every day, and I probably really should, I do it when I am feeling really discouraged or out of sorts. Today I sat down with my bible and an excellent cup of coffee and opened my bible to Psalm 29 (because today is the 29th). I am so thankful we have such an awesome God, because for those of you who don't know what Psalm 29 says here is just a piece of it, I encourage you to look it up today.

"The voice of the Lord is powerful,
the voice of the Lord is majestic,
the voice of the Lord breaks the cedars"
Psalm 29 4-5

"The Lord gives strength to his people,
the Lord blesses his people with peace."
Psalm 29 verse 11

Like I said these are just a few verses, but again I was smacked in the head on how I need to sit quietly and listen to the voice of the Lord, because it is powerful, it is majestic, and more importantly it is so loud and wonderful that it can break the enemy and build up my spirit. The Lord will give strength to me because I am one of his people, and he will bless me with peace today, because he says he will.

Washington

David was lucky enough to make real friends when he was growing up in Tehachapi. Not just friends that you see at the store and say hi once in awhile, but real honest too goodness friends that will last him a life time. One of those friends is getting married, in Washington TODAY. When we were first discharged from the hospital back in March, getting to go to Washington for the wedding was a big deal to Dave, he really wanted to be able to go and support his friend make this huge life commitment. The doctors saw no problem with it then but told us it would be all up to how he was doing by that time. Well..... we arrived in Bothell, Washington (about 20 min outside Seattle) on Thursday afternoon after a very long drive. I made the trip with Dave and the little kids, Doug couldn't make it because of work, but we had the best drive up here.

Seeing my son's face when we arrived and he was getting to see all his buddies for the first time since all this happened was one of the greatest moments of my life. I could tell that he instantly felt "normal". What a wonderful feeling that must have been for him, after all these months he finally is doing things again to make his life worth living. I have to say that the boy is impressing me with how well he is taking care of himself here. I was a little worried, mostly because when we get weekend passes home he pretty much throws caution to the wind and doesn't do what he is supposed to. But before we came up here he and I had a long talk, I love those talks with my boy, and he asked me to please help him stay on track. He knows he is not quite strong enough yet to do it on his own, and I was honored and pleased that he realized that and didn't feel ashamed to ask. We worked out a beautiful system together to keep the "peace" as far as his health is concerned, and I have to say it is wonderful to watch it work out.

David is doing just wonderful up here, taking his meds, his vitals, and his blood sugar as needed and not being a brat about it!! HAHA His friends are being so supportive and really show that they understand what he went through and that he can't do quite everything that they can yet. I was so proud of him yesterday, all of the guys were doing a bachelor thing, and that included paint balling. David stood up for himself by saying he couldn't do that, and the other guys were supportive and understanding. I can't imagine how hard that was for him to see all of them go and have fun doing that, but he made it work. He stayed back and visited with the people we are staying with, called a friend back in California, and just made the best of it. WOW! On top of that he called Bonnie because his blood pressure was high and he has never done that before without prompting! I wasn't even here, I had taken the little kids into Seattle. When I heard that my eyes welled up with tears, because I knew right then that he is going to be ok, and he is going to do what he needs to in this life to take care of himself.

Once again I am so amazed by what an awesome God we have, as I type this I am crying. He has used my son to teach me so very much these past few months, just as I have commented in the previous post. Yesterday I saw first hand that the Lord will guide, prompt, but most importantly take care of David always. And because my son is the strong Christian that he is, he has the spirit inside of him to listen to those promptings and do what is right. I have never felt such peace as I did yesterday. I finally felt comfort and realized that we are all going to be ok.

Through David I was introduced to some people he met in Washington, he used to date their daughter and when he was in the hospital the mother would call me many times and email many times. We developed a strong friendship these last 7 months through email, phone calls, and Instant Messenger on Face Book. I longed for the day when I could meet this truly wonderful woman that I can now call one of my very best friends, and that day came on Thursday. We are staying with her and her family here in Washington, and it just feels like home. It is so amazing how our Lord works, Michelle and I both know that she and I were meant to be friends in this life and that David was the vessel in which to make that happen. She, her husband Brian, and their three girls are such a big part of my life now, I can't imagine not having them in it. They love David so much, and that just makes me so proud and so happy that my boy has so many people that he can lean on for support all over this world.

Needless to say we are having a wonderful time, David is hanging out with so many of his friends that he has been missing, and he is just doing great here. The little kids are having a wonderful time on vacation with just mommy, whom they have missed so very much, and I am just in a state of bliss. I have all 3 kids with me and we are sharing some special times together, all of us. Today we will watch a young man that I have seen grow up enter into marriage, that just amazes me. I woke up very early this morning, that early Washington sun shining through the window, and I just prayed for them and their new life together. And I thanked my gracious God for giving my son the breath of life to be here to see this happen today. Isn't our God an amazing, wonderful God, I stand in awe of him, I really do. He makes all things possible in this life and I know I will never doubt him or the plans he has for me or my children.

Lessons I have Learned

In the education field you quickly realize that every moment is a teachable moment, no matter what you are doing. I sometimes wonder if that is how God feels about us... that he is constantly using every moment in our lives to teach us something, he is the ultimate teacher of all things. I for one have learned an incredible amount of things over the past 6 months. Things about myself as a person, the medical field, my family, the Lord, David, and so much more. When I really stop and think about everything that I have learned, even the little things it is really amazing to me. What amazes me and glorifies me is that our Lord uses every single thing in our daily lives to teach us, how great is that.

I have learned both big and little things in these past few months, so first I will start off with the little things....

• I have learned that I really like Chipolte, even though I was sure I would hate it, David forced me to go there one day and now I am addicted!
• I have learned that you really can survive on a limited amount of kitchen supplies in order to cook meals!
• I have learned that pretty much everything we eat in America is unhealthy for us, and that has depressed me greatly.
• I have learned that time passes very quickly for someone that has nothing to do all day.
• I have learned that FaceBook is incredibly addicting, but so much fun.
• I have learned that with a GPS you can find pretty much anything at anytime.
• I have learned that pretty much all towns have 3 things that I can't live without... Starbucks, Target, and Costco.
• I have learned that pizza from "Pizza My Heart" is probably the best pizza in the world.
• I have learned that you can find a lot of happiness by just hanging out with your cat all day.
• I have learned that as long as you have a library near you and a great park, life can be very good.
  

And now for the big ones, the more self inspired ones, that I never knew I would have ever had the opportunity to learn.

• I have learned that God is with you ALL the time, ANYWHERE, no matter what.
  
• I have learned who my real friends are, and I treasure them so deeply, because without them I could have done none of this these past months.
• Sadly, I have learned who our real family support system is, and even though that makes me sad in some ways, I am so glad for the family that we do have in our lives.
• I have learned that people who don't even know us love us and care for us more then anything in the world.
• I have learned that my husband is by far the greatest man in the universe, he has done so much these past few months all on his own, I am in total awe of him.
• I have learned that you can truly function on very little sleep if you have to.
• I have learned pretty much everything is to know about Cardiomyopathy, the Jarvick, and a long term stay in the ICU.
• I have learned that the Lord will provide you with what you need and when you need it, no matter what it is.
  
• I have learned that I can and will make friends wherever I go, and I will always love them and they will always be a part of me.
• I have learned that John and Claire are two very strong little beings, and I am oh so proud of them.
• I have learned that NOTHING, absolutely nothing is more important in this world then your family, and when times are tough you need to stick beside each other and stand by each other with a loving heart.
  
• I have learned that prayer really does change things, you may not like the way it changes things, but it does change things.
  
• I have learned that I can feel Gods presence where ever I am.
• I have learned to accept the things that I can not change.
• I have learned to give up some of that control that I have had all my life and lean on the Lord and to trust in him.
• I have learned that I have an amazing support system of family, friends, church family, and co workers.
  

I could go on and on about the things I have learned, but the truth is I am still learning. Every day the Lord presents a new challenge in my life that I must learn from... I am glad that I have had this opportunity to really grow closer to the Lord and learn to really listen to him.

90 days = 3 Months Post Transplant

Can I just say YAHOO!! I mean really.... we have made it to that glorious 3 month mark and I am oh so proud of my boy! He has had some pretty big stumbles and the fact of the matter is he still will.... but he has made it 3 MONTHS PAST TRANSPLANT. This is a big deal... the next biggie is 6 months and then the next one is 12 months.... I can't wait for those days... it will be oh so wonderful. He is such a great kid... I just love him so much. Really, I wish I could squeeze him and tell him that every single day... but big sigh... he is also a 20 year old man and isn't too hip on the old mom squeezing and loving on him ALL the time.

He got to say "adios" to the mask today... and that was a big step. Even though he will still have to wear it to the hospital for visits and anytime he is around construction or open fields... for the most part it is gone... and with that presented a whole new lease on life for him. I saw it in his face this morning. He was given some challenges to do this week and I really think he has changed his outlook some and is going to do them... I am praying. I also know that we have a very AWESOME God and he will do AWESOME things.... he already has. I am just excited to see what he has planned for this journey next.

I want to write more, but I am oh so tired. We had a long day at clinic today, which began very early, I still have the little ones with me... and I am just tuckered out. For those of you praying for our dear Claire, she is going in on Monday morning to have an Endoscopy done as well as a Colonoscopy done to see if they can get some answers and more test results. She will be put under for both of these procedures, but none the less it is not going to be a fun day.

So I am signing off for tonight.... but I just couldn't let this FANTASTIC 90 DAY mark go unnoticed on the blog... I am so happy, over joyed, filled with Gods never ending love, and SOOO SOOO proud of Dave for making it to this milestone....

Results......

Thursday and today were crazy days for us....... both appointments were informational and long... but they each provided good answers! David's appointment went really well in the fact that his heart appears to be doing great, his Ejection Fraction was at 68% which is terrific and the highest number he has ever had. They did a lot of blood tests and the docs are leaning towards this being a diabetes issue and not a heart issue. He came down with medically induced diabetes a couple of weeks ago which they told him would possibly happen after transplant because of all the medicines he has, but his diet hasn't helped the situation. So we need prayers for a change of "heart" on that one.

So today the doctors told us that he is for sure having a diabetes problem and we have to go back in on Monday for more testing and another clinic visit. They are unhappy about how out of control it is and his blood pressure is still not under control so they want to get a handle on that as well. All things that need to be taken care of before we can go home!!

Here is my prayer request, that David continue to have the positive outlook that he currently has but also WANT to make the EXTREME diet and exercise changes that they are asking him to do. He is unwilling and unmotivated to do so, I can only do so much in the cooking for him area, he is 20! I know he wants to, but we have all been 20 before and we all know how hard this is for him. So please pray for him and also if any of you talk to him please encourage him to make these healthy lifestyle choices!

A New Week.....

Things have been so crazy this past week and I have been feeling a bit frazzled... a good friend of mine suggested tonight that I blog.... and he was so right!! So here I am back at the ol' familiar keyboard doing what I do best, airing out my dirty laundry for the whole world to see! HAHA No really, it has been quite an up and down past 7 days and not just in the aspect of David. We went home for the weekend, we had out of town guests, we came back, then I traveled back for the kids last day of school, and now all 3 kids are here with me at the "homtel". In between all of that Claire has gotten very ill and the docs will begin testing her tomorrow to see what is going on with her (right now they are thinking possibly Celiac Disease) and then tonight David has 'fessed' up to not feeling up to par the past few days and the Stanford staff are a bit worried by his symptoms! So where do I begin......

Lets start with last week's clinic visit, all was pretty standard stuff. His blood pressure is still really too high and the doctors aren't happy or encouraged by that. So they doubled his blood pressure medicine because they really want to get that down as soon as possible. In addition to that his blood sugars are also too high so they doubled that medicine as well. He needs to exercise more which he really does not and will not do, that will help both of those things a great deal, but he is being very stubborn about that. His potassium levels were low so they also started him on a potassium pill this last week. His biopsy was good showing 0 rejection and he had a good echo, so that was all very pleasing. We just need to get the blood pressure and blood sugar under control before they will let us go home, probably another 4 weeks is what they are thinking.

Tonight however a whole other can of worms was opened, and it is something that I am trying to just give to God. For the past 4-5 days David has just been a big sloth! He hasn't wanted to get out of bed, he has been sleeping all day, taking lots of naps and just acting really tired. Well today I had enough of it and thought he was falling into some old habits that I thought we had gotten past! So I asked him about it, that is when he told me that he wished he had energy but he was just physically wiped out, that in the last 5 days it was like a major change in his body has occurred. He couldn't even do as much at Physical Therapy as he could last week because he was so tired. He wants to get out of bed but he physically can't, this worried me and I could tell by looking at him that he just didn't feel good so I called our nurse right away. She asked him a series of questions and was on the phone with us for a long time.

We don't have a normal clinic visit tomorrow because we are finally on every other week appointments, but some of his symptoms are alarming. Here are just a few, extreme lethargicness, frequent urination, not sleeping well at night, no appetite, and feeling like something is just "off". Because of all of these and more we are going in tomorrow at 8am for him to be seen and more then likely they will do an echo at the same time just to make sure everything is A-OK with that brand new ticker.

I of course am a nervous wreck on one hand, and even broke down on the phone with the nurse tonight. More so because I feel like I just can't take anymore, but because our God is so good he provided me with an awesome phone call from a friend tonight that encouraged me that I can get through this next step with ease, she had no idea any of this was going on and so I truly know that the phone call and the talk with her was God led.

So tomorrow we will be at doctors offices all day long, and the kids are here with me, so please pray for them as well as David. We take David in at 8am and then Claire goes in at 10:15am to be seen by a pediatrician. The Lord will be by our side tomorrow, I know this without a doubt, he hasn't stranded me yet..... I will keep you all updated.....

Walk a Mile in my Stanford Corridor...

Earlier today a comment was left on the blog in regards to the last posting that I took very hard. It was a very judging comment on me as a mother and how I have chosen to react and interact in this situation the past 6 months. I prayed about it, discussed it with Doug, and then deleted the comment. I do not know who left the comment, but it hurt me deeply. I was trying to shake the hurt all day long. Then tonight when we went to bible study with our group of new found "San Jose" friends, the first verses we read about were all about judging others. I knew this was the Lord's way of telling me that I knew it was not right and I needed to stand up for myself and how I truly felt about this situation.

It is very easy for every one of us to look at someone else's situation and say how we would act or react if we were in their shoes. Come on now, we have all done it. But the bottom line is we can't say that until we have been there ourselves and even then it is just not the same. It is just like saying "my kids will never do that" and then they turn around and do it. We just can't judge what others are going through or how they are handling a certain situation because we just don't know how it really is.

The last 6 months have been anything but easy for me and my family, they have been down right awful. I have probably made some decisions that weren't for the best and I have probably said some things that I shouldn't have. But the bottom line is I have been there 100% for David and that is all that has really mattered to me. For some this can be mistaken as being to controlling, but again, unless you are here in my life, you have no right to pass that judgement. I gave up my life quite willing to be by his side and there is no place in the world that I would have rather been. Being here for him has been my life and it will be part of my life for the rest of my life, this process has totally changed it. Just because the transplant is over and he will be going to San Diego for awhile doesn't mean that my caring for him will stop and that my life will "start over" as it was commented.

It has taken me a long time in these past few months to learn that I no longer need to sugar coat just how bad our situation was. So for those of you, or even just that one person that would like to pass judgement on me as a mother, these next words are for you. Please try and visualize this while you read on. Day after day I sat by my son's side from 8am in the morning until 7pm at night watching him die a little bit more each day. It wasn't very obvious at first, but soon after the Jarvick was put in it became very rapid. I never once cried in front of him, not one time. I held it together because I did not want him to ever be scared or to think that he could not rely on me for his strength.

When the Jarvick was put in and my son woke up not being able to speak or use his right side, the terror that went through me is something that I will never not ever be able to put into words. But immediately I started thinking about how we would make that work if it happened to be a life long thing. Never did I let him think that it was impossible not to survive what was happening to him. Day after day in the ICU he would do nothing but dry heave and vomit because he couldn't keep anything down, and all I could do was hold him in my arms, and hold his head and neck because he was too weak to support himself while he was vomiting. And even then I was questioned because he didn't want visitors to come and see him that way. I watched him go from a trim 185 pounds to a scarce 150 pounds in 6 weeks time. It took all he could just to get out of bed and walk around the ICU floor, and that was with the help of me and 2 nurses.

He would lay there and look at me and tell me he wanted to die, do you know how hard that was for me to hear?? Your own child is looking you in the face and tells you he wants to die, and I would just look at him and tell him you have come this far don't give up now. Again, never once crying in front of him and only leaving his side to use the restroom or to eat. He would tell me that is was hard to sleep at night because he could feel and hear the Jarvick inside of him and it felt so unnatural, and I would just tell him in a no nonsense way, "It is keeping you alive, so deal with it." He got mad at me on more then one occasion because I was pushing him to stay alive when all he wanted to do was die. And then I would feel so guilty because at night I would collapse in my hotel bed and beg God crying to take him home because I couldn't bear to see him that way anymore.

I was the one that stood in the hallway when the doctors came to me and said, "all we can do is make him comfortable, he probably has a week or two at the most." I was all alone that day, just me. I started thinking about his funeral that day, what he would wear to be buried in, and even called and left a message for Monica LaMonte fully intending to ask her if Jeff would sing at the funeral. I did all of these things without him ever knowing, because I didn't want him to give up fighting EVER! I fought with the doctors when they wanted to take him off one of the medicines that I knew was keeping him alive and had no problem telling them I told you so when I proved my point to them.

Everything I did was for the beauty of that boy, everything I still do is for that child. I have taken on Stanford doctors, nurses, and even the United States Navy these last few months. I micro manage about 100 little details every day that nobody else would even think of, like for example what kind of Magnesium he can take, thats right he can't just take any old magnesium pill! Yes, he is learning this stuff as well, but who do think needed to learn it first! I know his medical history like the back of my hand and can reel it off to anyone in a split second if they asked as well as any medication he is currently on. This isn't being controlling, this is being his mother.

I will always remind him about his medicines, his blood pressures, and the things he needs to do to keep himself safe, because I came to darn close to losing him, I watched death close in on him and I will do everything in my power and through the Glory of God to protect him from that, why? Because I am his mother thats why. So if anyone wants to judge me on those actions or tell me that I am too "controlling" or that "I have my own life to get back to"... then just try walking a mile in one of my Stanford Corridors. It isn't fun, it isn't pretty, and it isn't for the weak hearted. Everything I have done I have only been able to do through the power of my Savior Jesus Christ, and I thank him every day for the strength that he has given me and the trials that he has brought me through.

Seriously... 6 MONTHS???

Today we had the Navy visit us and delivered us some news that I am not sure how to take! We have known for some time now that once David is released from Stanford's care he will be released back into the custody of the Navy so that they can medically retire him. What we didn't know was the details of this and for how long. Today we were told that it was going to be for about 6 months, that is how long the retirement process is going to take. I have really mixed feelings about this and there is still a lot of details to work out but for now this is what we know.

David will get some time, not a lot but some, off before having to head back to San Diego in July. At that point he will be on what they call "Med hold" and will be in private barracks on base. He will be under the supervision of a cardiologist and other doctors at all times. While under going several tests and evaluations they plan on giving him a light duty job to keep him busy on base. One that is safe and approved by the Stanford doctors. The entire time he is being evaluated by the Navy doctors the team at Stanford will be in the loop and he will continue to get his follow up care at Stanford. The barracks he will be in will be basically like a hotel room where he will have Internet access, cable TV, and there is also shuttle service that can take him to his appointments, but he can also drive as well.

Like I said, I have really mixed feelings about this.... I have been by his side for the last almost 6 months and to think that in less then 30 days that is going to come to an abrupt stop is almost depressing for me. I will really miss him, a lot. I know that this is going to be great for him, and when he found out today he was just about excited and is already making plans for his stay down there. That makes me really happy, but I was really looking forward to taking him home with me. I have loved having him around 24/7 and I am really going to miss this boy. He and I have formed quite a bond these past months and I can't imagine what it is going to be like without him around. I never even thought for a minute that was even going to be an option.

So we have a lot to muddle through here these next few weeks, and who knows this could all change up. But for now this is what we are being told!!

We are BACK!

Before I get going on and on about what is happening RIGHT NOW in our lives, and let me tell you it is exciting stuff! I want to catch you all up on how I have seen the Lord really and truly working in ours the past two weeks... it has been a wonderful time to really stop and listen to what he has been saying to us.

The night of Mother's Day I laid in my bed feeling so very sorry for myself when really I shouldn't have, I had a weekend of joy with my family and I was focusing way too much on what I didn't get out of it. That started making me really upset at myself, then at 3am I was woken up suddenly by some ruckus outside and as I was trying to fall back asleep these words came to me," Do not exasperate your children, bring them up to know me the Lord." I thought to myself as I was falling back asleep, sure I have been heavily pounding, along with the doctors, what David should be doing, but had I been doing in a Christ like way. Had I been doing it in a way that a true Christian mother should be? Was I going to my son and getting down on my knees not only FOR him but WITH him and showing him how to pray for guidance with this new life. I was not, and I was not showing him how to walk this walk with the Lord, and that needed to change.

It is funny how once you have your mind set to something, and it is something that the Lord has prompted you to do it is very easy to accomplish. The next morning on the way to Physical Therapy I had decided that the sins of the weekend had been washed away and we were going to move forward. When we got into the car I turned on my IPOD and the first song that came on was , " I will praise you in this storm" by Jeremy Camp. My eyes welled with tears, because that is something that I had stopped doing. I had stopped PRAISING the Lord for the new challenges he was putting before me, because through all things I am strengthened not just some things!

Later that very day my friend Sarah and I took David up to Alcatraz and we had a truly awesome time. I let go of all my fears for him and just gave him up to the Lord, I only wish that I could hold him close and protected forever, but the reality of it is, I CAN'T. But the awesome thing is the Lord CAN! How great is that, that the Lord can protect him when I can't, what a great insurance plan! When we got home at night and I downloaded the pictures on my computer there was one that I just loved of him and I. He is holding me tight with one arm around me and we are BOTH smiling, I started crying and felt compelled to send him an email thanking him for the day with a copy of the picture. Yes even though we live in the same hotel room, an email seemed the perfect way to communicate for me.

It wasn't until very late the next night that I got a response, and it was such a positive one. It is an email that has been printed and put in that treasure box that I hold near and dear to my heart and everything precious goes into. Since that day, he has taken his vitals pretty regularly, his meds on a good schedule, and has been doing some exercising. He hasn't gotten it down to a perfect routine, but he is honest when he doesn't do it and he is trying his best. That is all we can ask for, and just the fact that he is making an effort is a step in the right direction for me.

Something else happened that week after Mother's Day, a friend of mine from Bakersfield sent me a text message that a good friend of hers had been air lifted to Stanford and was in multiple organ failure, mainly with her liver. I felt compelled to stop in and see her mother and father, as this young woman is only 26 years old. I know first hand what it is like to sit there and watch your child dying, and it is something that you can not describe to anyone else or really share with anyone else. It was my honor and extreme privileged to take both of those people in my arms and hold them close. And I think it was very good for David to see just how hard it is to watch a child dying, being on the outside looking in paints a very clear picture of the pain and anguish that you feel. Thankfully this family were believers and even more so 2 days later the young woman got a liver transplant.

We got to go home that weekend for another weekend pass, and it was an extended pass this time, 4 days instead of 2 and we just had a ball. Again I had to take a deep breath and let the Lord take over, for once I concentrated on myself first and not David. I loved on my little ones and most importantly my husband. I hung out with friends, saw my family, and one day stayed in my workout clothes all day because I COULD! Somewhere in that weekend David made a huge turn around in his attitude. He did get cleared for driving that week so he drove to a friends house, which was so exciting for him. When we came back to the "homtel" his whole attitude was different, I could sense it in his whole being. He started wanting to play his computer games again, napping has pretty much ceased and he has taken full control of his health care. He even helped me carry in the groceries when I got back from the grocery store.

And then the most exciting thing that happened this past week, and I just love our God for this one! We were invited to our friend Sarah's house for dinner, she and her husband were making us some homemade Italian so we drove down into San Jose for dinner, and let me tell you it was good! Then we stayed for their small group bible study that they have every Wednesday night, they were starting a new study that week on Romans. I personally loved it and I was the "oldest" meaning more seasoned in the group, being the only one married outside of 2 years and having kids. Which was really weird since we were all the same age, but this group of people were so incredibly awesome and so filled with the Lord. David really loved being a part of the group and really enjoyed himself and even offered up a part of himself when they asked for prayer requests. Later that evening when we were back at home he then asked me if it would be all right if we went every Wednesday while we were still here! YAHOO! Our God is a great big GOD who will lead us where we need to be when we need to be there!

Then this past week I got what was apparently some sort of flu bug. At first I thought it was my ulcer acting up or maybe something I ate, because the only symptom I had was a HORRIBLE tummy ache. David was very sweet and took really good care of me, even went down to the hotel lobby and got me 7ups as I needed them. But the day after I started feeling better he came down with it. I felt so bad! How could I of infected him, when they told me the care givers were to leave as soon as they got sick! But I called the nurse and she just laughed at me and said that this was a good thing for several reasons. 1) It made him realize just how immune suppressed he really is and how quickly he will get something 2) At least it happened why we were close to Stanford so they could help us learn how to deal with common every day stuff that he is going to get and 3) This helped David really learn how to stop and listed to his body.

He is finally feeling better today after 3 full days of the horrible bug, it attacked him harder then me because his system is so weak, but he is pretty much back to normal today. The whole family was here over the weekend and it was just awesome. We are getting close to being "released" we are hoping for sometime around the 19th of June, so pray for that please!! He is really taken a new lease on life and it shows in his daily behavior and attitude.

Here are some medical updates that have happened since last posted:

• His tongue swelling that he had right after transplant has come back again mysteriously
• He contracted Thrush in his mouth from not taking one of his meds that prevents that
• He has become Diabetic, which they told us would happen, it is Medically Induced Diabetes, and he has to just watch his sugar intake, they have him on a blood sugar medication, and he has to test himself twice a day with a little pin prick on the finger
• His blood pressures have been on the high side so they have been trying to regulate that with medication as well. Diet and exercise will also help with this.

So things have really been moving and grooving over here and I am now officially going to keep blogging, because Our Story, wouldn't be Our Story if it wasn't for all of you.

Alcatraz....

My friend Sarah and I decided that David needed to see what jail really looked like... NO I AM JUST KIDDING!! Last week, Dave made a list of things he wanted to do to get out and about and since we are only 30 minutes from San Francisco, he put down Alcatraz as one of them. Our good friend Sarah Ferraro said she would love to join us because she had never been and it just so happened she had today off from the hospital so we took the afternoon and drove on up to the city and had a great time. After the tour, which was REALLY interesting we all went out to dinner at Bubba Gump Shrimp's and then headed back to Stanford. It was a fun day and we ALL enjoyed ourselves, so I am pretending that today was my 2nd mothers day. Maybe yesterday David just didn't like sharing me with the little kids:) So I felt really lucky to have a good day with him today and it was a lot of fun.

This is David standing in one of the "Isolation" cells, wonder if it is the same one that Al Capone was in?

Dave and I on the island with a beautiful view of the San Francisco Skyline in the background.

A great group shot of the 3 of us before getting on the ferry that took us to the island.

More to Come.....

****** UPDATE*******

The blog is not over..... more to come in the next day or two.... mainly because I am just so stinking tired.... but the Lord really spoke to me last night and then again today..... and the blog will not be over.... I am so excited how the Lord has chosen to work in this next part of our journey.... but in the meantime enjoy some pictures of the outing I took with my son today.....

Mothers Day

So today is Mothers Day..... I will not go into detail as to what kind of day it was for me, but if you would like to email me I will tell you.

Thank you for all the comments you have left on the blog to David and I, they mean so much to me. But I have to tell you that to my knowledge, David does not read the blog or the comments. He has a friend that reports to him what I write on the blog, and the report gets a little misconstrued I am afraid. So because of that I am now toying with the fact of not writing on the blog anymore, it has made him mad enough to not wish me a Happy Mothers Day, and that makes me sad and I will not have that kind of contention between him and I. I know that he loves me very much and things are just hard for him right now, and in his defense he is not being mean at all, just stubborn. I love him more then anything in the world, and I know that he KNOWS that. I just need to get down on my knees and pray for him that his heart will change and that the Lord will really speak to him. I know he will and I know that the strength for all of this will come through the Lord, but I do not want David getting to the point where he resents me. So far he has not, I don't know why he chose not to acknowledge me on this day, that is between him and the Lord. I know that he loves me and that is all that matters.

So if I don't write much for awhile, that is why. I have a DEEP DEEP love for all of you and my heart is full of love for so many of you that I have never even met. Please know that I thank the Lord for each one of you every day.

I am so sorry

Today Dave and I went together to the therapist, she was quite disappointed from last week after talking to the doctors about Davids choices before yesterday. She openly told Dave how upset she was and how his choices were eventually going to cost him his life. She talked to him for a long time about the things he has to do from now on where his health is concerned and that he will have to live a different life then before. It will still be a wonderful life, but there will be some added stuff to it that he is going to have to do to stay alive. Dave then shocked all of us by saying he will do what he needs to do to be "released" from Stanford but after that he has no plans to continue the treatment plan they have in place for him. His exact words were, "this is all so stupid." He says he will take his medicines because he realizes they are important, but he will not take his vitals, continue to exercise, watch what he eats, or manage his life in any other way. He says there is no point and he will be fine and that he is tired of the scare tactics everyone is pulling on him.

The therapist looked at me and said that Doug and I needed to treat this attitude like parents of a drug addict. That as much as it hurts us that we can not allow him to live with us when he is choosing to ultimately kill himself. She then told me that it would be so hard to watch him make that choice everyday, and that we needed to prepare ourselves for the fact that because of this David is going to die. He will probably die within 1-5 years because of his decision. He just smiled and had a whatever attitude, and that he isn't worried about finding a place to live because there are plenty of people that will take him in. There is no hard feelings going on between David, Doug, and I at all, he just doesn't want to do what he needs to do to manage his life, his exact words are ," this is all so stupid." I know I already said that, but I feel it bears repeating.

I beg of you if you are approached by David to come and stay with you that you firmly tell him no, and why you are saying no. He needs to hear it from other people, not just us, how badly it hurts us that he is choosing this for his life. Please do not enable him to continue this pattern, I plead with you. He says he isn't trying to hurt us he just doesn't see the point in all of the extra stuff. In his mind he has a new heart and everything should be fine and that nothing will happen, we are all being paranoid.

I am deeply sorry that so many of you have stopped your life for him, have prayed for him, and given so much of yourselves to his recovery. I am deeply embarrassed and sad that this is how he is choosing to show his gratitude.

Please pray for the Lord to work through him and show him the reasons why he needs to treasure and change his life, because it is totally up to the Lord now. He knows what I want and everyone else wants. It is up to him to do it. He has been doing great here the past couple of days, but he openly admits it is only because he wants to leave and he is "giving them what they want". He has no plans to continue taking care of himself after we leave here.

Giving it to God- ALWAYS

Late Tuesday night I was on the phone with a friend and I was so tearful and at a loss as to what to do next with this sweet boy of mine. Thankfully she is the kind of friend that doesn't mince words with me and basically said this to me, " YOU NEED TO GIVE IT TO GOD!" she then proceeded to tell me how I could do no more it was now between David and the Lord and how I could only do so much. Right then when she said that to me I was not acting like a believer but first and foremost a mom, I listened to her and thought to myself- Well, too bad God can just work through me to change this child! Isn't that just the controlling nature of us moms! I got off the phone with her, came back inside the homtel room and went to bed. The next morning (yesterday) I woke up and thought to myself, "what am I thinking! Of course I have to give it to God, he is the only one that can really help us!" So I got down on my knees and did just that, I pleaded with the Lord but also knew that through him is the glory of all things.

I went about my day yesterday, and had a few opportunities to tell David how I really felt about the situation in a non threatening way, clearly stating that this had to stop not only does he want to get on with his life but so do I. Things like that, not sure if he really listened, but it was on my heart to say such things to him. Then in the afternoon I called one of our mighty prayer warriors in Seattle and we spoke about the situation and she told me she would start lifting him up in prayer. Then I posted the blog about how we needed to lift him up and let the Lord work through him.

Last night around 4pm, he came out of his room sat on the couch and turned on the TV. He has never done this, he always sits in his room with the lights off and curtains drawn, even to watch TV. He then proceeded to sit on the couch and watch TV for the next 5 hours, I sat there truly dumbfounded! Then this morning I went down to wake him up for clinic and he was already up taking his BLOOD PRESSURE and other vitals. I was again stunned, and then chastised myself for being so stunned, because it hit me all at once that this was happening because I finally gave it to God. I realized that this whole time I have been struggling for the answers and help and this whole time the Lord has just been waiting for me to release it to him. You would think that after all we have been through I would have realized this a long time ago! BUT NO- I had to be the stubborn one. Here I was being a fretful parent because David was acting like a disobedient child, but I in turn was also acting that way to the Lord. Oh how he must have been fretting over me these past weeks!

Then today in clinic our wonderful nurse Bonnie came up with a fantastic STRUCTURED plan to keep David on task and to do the things he needs to be doing. David was thrilled with the plan and is excited to try it. If he does it exactly as laid out for him for the next 7 days they will in return grant him another weekend pass home, with some conditions of course! In addition to all of this they also gave him set goals he needs to accomplish before they will release him for good, he was excited about this and I can tell that he is ready to make a difference. After we left the doctor he told me " we need to make a list of things to do everyday and just do them, I am going to try harder." My heart was so happy!! Then tonight when we got home from the hospital, instead of going to straight to his bed, he changed into his swim trunks and went down and swam for 1/2 hour! PRAISE GOD! I know that Gods Glory is being shown through this, but I am also keeping our nurse Bonnie's words in mind, she told me today she was being "cautiously optimistic":)

These events have strengthened my resolve once again that the Lord will work wonderful things if we just ask him to and turn over our hearts to him. This is no happenstance that David has had a change in attitude this is purely the power of prayer and release from the Lord. I am so thankful that I have a sovereign God that is my protector in all things, especially in parenthood.

Oh and one more thing that has maybe helped a little:) I brought our cat, Sebastian, to the homtel this past week and he has been nothing but joy for David and I. Plus it is another "being" for us to interract with and has been helpful for the both of us!

Address Information

I am so sorry for those of you who have commented on the blog or have sent me an email regarding our new address! I don't think I ever posted the new information! I have it on the side bar of the blog under Address Information, but here it is once again.

David or Bronwyn Kennedy
1854 W El Camino Real #1122
Mountain View, Ca 94040

Some stuff to Ponder......

Tomorrow we go into clinic and I deeply nervous about that visit, only because there has been little to no improvement in David's attitude this week. I know the team are working on a plan together and I am anxious to see what they come up with. Then on Friday he has his therapist appt and she has asked that I come with him as well, this came about after she talked to the nurse and found out that David wasn't being honest in his sessions with her. So we have an emotional 2 days ahead of us, and I am asking for some big prayers here! Here is what we need as a family in regards to prayer:

• That David really listens to the doctor and other staff and is lead to really change his behavior and attitude.
  
• That his heart would soften to the fact that we are all just trying to help him, not nag him and be on his case all the time.
• That the Lord will give David the strength to make these changes.
• That David can really be honest and let go with the therapist and be open to her suggestions.
• That he will start getting on his knees and asking the Lord for help through this and ask for the desire to change.
• Please pray for my husband and other children that they can stay strong just a little bit longer.
• Pray for me that I will continue to have a joyous heart even though it is some days really hard to be joyful for two of us.

I really appreciate everything, and I know that one day David will too. The next days will provide a lot of information and then this weekend the family comes to celebrate Mothers Day with me. I pray that it will be a joyous occasion and David will see how we all need to be together and not living apart.

Down on my knees

I know I haven't been blogging as of late, and I am deeply sorry for that! I am just so frustrated with this child of mine! He has been given such a gift of life and he is just throwing it away, it is making me so sad. Nothing has changed since the last posting and we had a huge meeting last Thursday and the doctors set him straight as to how things have to be, including telling him that he is not going to be able to leave unless he makes some serious changes. They also told me that I can not remind him of things such as his vitals and other low maintenance stuff. I remind him every day that he needs to get up and walk and get out of bed, but he is an adult and I can't physically make him get out of bed! Boy do I wish I could! He has to want this and so far he hasn't shown any wanting..... he is deeply depressed and I get that, but he has to start changing his behavior.

He had such a major trauma in his life and I accept that and more then anything I want to help him through it, we all do, but he has to want us to help him and so far he doesn't. He knows what he needs to be doing, he is CHOOSING not to do it. It is very hard to sit and watch your child almost die not once but four times in the hospital, but it is even harder to sit and watch your child give up on his brand new life. The hospital was the easy part this part is the hardest thing I have ever had to do.

Most of the time I keep my feelings on all of this bottled up inside, because I have felt right from the start that this whole situation was not about me, but about David. Finally this weekend I released most of those feelings with a group of really close Christian women, I am so glad that I did. This experience has been eating me alive, not to mention several other "life" things that have happened along the way, it has not been my ideal past 5 months and I am so over this experience. One thing I learned, AGAIN, this weekend is I am not alone in this fight and I do not have to be alone. I am not giving up on David in the least bit but I have been so focused on him that I have forgotten about not only my husband and his needs, but mine as well. It is very easy to let the "sickness" control your life and I refuse to do that any longer.

David needs to wake up and gain control of his new "normal", it is something that he is going to have to do and practice doing everyday, because the reality of the situation is this is his life now. He needs to learn how to do these things by himself so that he can adjust to reality when we finally get to leave this place. I am ready to go home, now we must get him ready to go home. I will continue to remind him everyday that this is not just about him anymore, his choices right now are affecting everyone around him, me, his dad, and most of all his little brother and sister, he needs to realize that and I won't stop reminding him until it does. I may not be able to say, "David you need to do......." but I will tell him everyday, "David I want to go home, how are YOU going to make that possible." This is up to him right now, I have done everything in my power to be a strong pole for this boy and I will continue to do so, but he needs to do some of this on his own.

I want you all to pray for David everyday, I know you are, but really pray for him to lean on the Lord right now. Only the Lord will bring David out of this pit and I feel like his faith in God is waning and that makes me so sad. He has always been rock solid in his faith and now I wonder where that has gone. David is the strongest person I know, and I know without a shadow of a doubt that he will rise above this, because of who he is and who he wants to be. He is in a dark place right now, and by all means he deserves a little thinking time. But it is up to the rest of us to really pray and lift him up so that the darkness will leave him and he will lean on the light of the Lord.

April 29th, 2009

We are having some difficulties over this way, and I have been very closed mouthed about it on the blog because well quite frankly I have been embarrassed. I have felt like maybe I haven't been doing my job right and I don't want anyone to get the wrong impression of David and who he is. But then today a really good friend pointed out to me that I have always been incredibly honest about my feelings on the blog and have never held back so why should I start now. After much prayer I have agreed with her. Because, if no one knows what is going on then no one knows how to pray! So here goes....

David is doing good I guess depending on how you look at it.... he broke a lot of "rules" over the weekend. I didn't say anything then nor now... he had to "fess" up to the doctors and nurses on Monday when they called to check in on him. I am glad he was honest with him, but because of the choices he made, he more then likely won't be getting a weekend pass again. Another problem he is been having now as well as the last 4 weeks is that he is doing nothing to expedite his "rehab" process. All he does is lay in bed, that does not help his body nor his mind, it also doesn't do anything to help him get ready to leave here. This 3 months is supposed to be teaching him how to re live his life and he is choosing not to do that, therefore they may not let him leave in June, he may have to stay into July, which will not be fun for any of us. But the doctors aren't seeing any effort on his part to rehab or practice life style changes. I refuse to nag him about what he should be doing, he knows what he needs to be doing, he is choosing not to do it. At least he is honest with the doctors when they ask. So please pray for him to have a change of heart and to want to rehab his body and life. Right now he is showing no desire to do that, and that has to change.

Physically he is healing fine, but in addition to that he is supposed to be exercising (3 hours a week in Physical Rehab does not count), he is supposed to be practicing and maintaining a good diet ALL the time, he is supposed to be managing his meds and wearing his mask all the time and the right way, he is supposed to be taking his vitals and writing them down every day, he is supposed to be learning how to live life to the fullest because he was given a second chance. He is doing none of what I just mentioned. They gave him the weekend pass in hopes that he would feel the light on the other side and want to start making some serious changes, but instead he made some not good choices over the weekend with food, sleep, meds, and vitals. In addition to that he came back and fell into the same patterns as before proving to the doctors that the weekend pass wasn't a good thing.

He doesn't need anyone else "ragging" on him, I leave that up to the medical professionals. But he does needs prayers for a change of heart and mind, none of us are sure what is going on and why he isn't living life to the fullest with this new heart, but something needs to change and quick. The possibility of us having to stay on longer then June is looking pretty great at this point because of his lack of cooperation, and if any of you know David, this is not like him at all.

The Weekend Pass

I was so tired yesterday from the very busy weekend that I didn't post, so sorry! We did have a very nice weekend going home and being together as a WHOLE family. We learned a lot about how we really depend on the "Stanford Net" and how different things are going to be when we all go home for good. It was a good practice session overall for all of us and I am glad that we did it. We had some great family time and everyone was really happy to see David. He got to meet some people that have been praying for him and that was special for him and them as well.

Friday night we went out to dinner with some good family friends and just enjoyed being "normal" for an evening, it was really nice. Then David and I went and hung out with my dad for awhile which was really nice and something that I don't get to do very often, so we all really liked that. Saturday my sister Sarah had a BBQ at her house to celebrate the weekend pass and that was a lot of fun to be around all the family. I love my nieces and nephews so much and Dave liked just being there and relaxing. They have a beautiful new house with a pool and it was a great day to be outside so it was a really nice afternoon. Saturday night we all went out to dinner again but this time it was all of the family, both of my sisters and their families, and my dad and stepmother. It was rowdy but a lot of fun and David really enjoyed himself.

Saturday night I already had a previous engagement with some friends so I left and Doug was in charge:) David had his Uncle over and 2 more friends for a computer LAN party. They stayed up through the night playing computer games and I know he really enjoyed himself. He slept most of the day on Sunday before we came home, I had a baby shower to go to, and so after I got home we left.

Overall it was a really nice trip home for the weekend. I do think that he over did it a bit and is a little depressed to have to come back to the homtel, but it was a good experience for all of us and I am really glad that we had the chance to do it!

April 23rd, 2009

We got great news today! The doctors gave David a weekend pass home!! YIPPEE!! He gets to go home on Friday night and stay in Galt until Sunday afternoon! We are all so excited! He hasn't stopped smiling since they told him that today in clinic! He is over the moon with happiness! It is just great.... I am so happy to see him happy. We are unsure of how often he will be allowed weekend passes, but even if it is just this once it is soooo worth it. Our friend the nurse thinks it will probably only be twice a month even though David is hoping for every weekend! But still something is better then nothing! I can't wait for us all to be home even if it is just for two days! This is so exciting! And they cleared him to swim, which was another awesome thing, especially since it has been so hot up here! So he is just smiles all around. Since we didn't have a biopsy today it was a quick visit... and we got home by lunch time!!

Precious Heavenly Father thank you so much for providing us with such good news today and giving David the uplift that he has so desperately needed and that only you could provide. I pray that you provide for us a safe weekend ahead that nothing will go wrong and that he will listen to his mind and body and not over do. I also pray that you will help me to relax and not be a nervous wreck all weekend worrying about him since we will be outside of the Stanford net. Please help me release the caterpillar as he starts to turn into the beautiful butterfly. In his precious name.... AMEN.

On a side note

Please check out this website when you get a chance.....

http://www.justgiving.com/englishjoe


Our good friend Joe Matthews is also a heart transplant survivor and is competing in the World Transplant Olympics. He will be representing his nation but also Stanford and their abilities to preform such a miracle of life. Please check out his website and donate whatever you can if you feel so inclined. He has been not only a good friend but a huge inspiration and support system for David and our family.

Thank you so much~

April 22nd, 2009

Today was a good day! Dave had cardiac rehab today as well as his 4 hour infusion over at the hospital after rehab. I took that 4 hours to good use and made a lunch date with my new friend Sarah, boy was that sooo much fun! Real honest to goodness girl time! I didn't realize how much I had really been missing that! We had a great lunch and then sat outside and enjoyed this beautiful weather and talked for almost 3 hours! It was so fantastic, she and I have really connected and she has been such a blessing to me! I felt very refreshed and happy after we parted ways and I went and picked up David. When I picked him up he smiled and said, "yep you've been with Sarah" I laughed and said, "how can you tell?" And he said,"cuz you are all happy". I just laughed at him! He has been in much better spirits these days and is constantly giving me a hard time, this is how I know he is feeling better!

Tomorrow is clinic day, but no biopsy so it should be a short visit! His blood pressure has been a little high so they may adjust his meds some but other then that I am expecting it to be a pretty standard visit. Doug will be coming here for the weekend and I am going home for the first time in 3 weeks! I am glad, I am starting to forget what it looks like! :) Dave is really starting to improve in all areas and that makes me really happy! He is starting to behave like his old self again and that just makes me feel happy all over. I can honestly say that there was a time not so long ago that I didn't think it would be possible to feel honest to goodness happiness or laughter in my heart again. I am so glad that I have a God that has shown me the error of my thinking and that ALL THINGS ARE POSSIBLE THROUGH HIM WHO SAVES!

April 21st, 2009

We just got back from Physical therapy and David had to laugh at how tired he is! And he said they really didn't do all that much therefore proving how deconditioned his body really is. But he says it feels good to get his body moving again and really start pumping. His therapist for PT is not a slacker at all she works him hard and I can tell it is really doing him some good. I just dropped him off today because I spotted a Joanns down the street, and couldn't resist going in and seeing what they had in the way of Scrapbooking supplies.... hehe. I picked him up though with a good 10 minutes to spare and I could tell by his face that it was a good workout. Now he is pacing around here full of energy, a good work out will do that for ya! I have to laugh because that is a problem he has NOT had in the recent weeks so it is good to see the boy out of bed for a change! I gave him a few "chores" to do and he surprised me by actually doing them! But I suspect the morning will wear on him soon and he will want to take a nap pretty soon here. I actually have a doctor appt for myself this afternoon, so I told him that might be a good time for him to sleep.

I am so proud of him, he has really been trying his best. There has been more then a few times in the last 5 weeks that I have been really worried about him, but in the last couple of days I have really seen a difference. I think talking to the psychiatrist has helped a lot and knowing that he will have that release every week is a good thing for him, plus the anti depressant is probably finally kicking in. The poor guy has so much to work through mentally, physically, and emotionally and I am really proud of him so far. He is such a good kid and really knows how to kick it in gear when it matters.

Dear Lord, thank you again for giving David this awesome second chance at life. Thank you for providing us with the best doctors in the world, thank you for giving them the gifts to help David. Thank you for providing us with friends and family that really want to help David and allowing them to show it on an every day basis with the uplifting emails and messages that they send. Just knowing that you are behind all of this makes every day worth living. I praise you Father in Heaven because through you all things are possible. Amen.

April 20th, 2009

Once again the Lord chose today to test my diligence and faith!! But oh how the Lord is faithful in reminding us that he is there and near to us every step of the way. And how great of a son that I have where he chose to remind me that he loves me very much and he wouldn't have it any other way. I just walked up to him and gave him a big old smacker right on the face!! He of course was totally embarrassed, but come on how can I not just love him to pieces right now. Not only has he told me I am the best mom several times in the last 24 hours, but he continually loves on me and tells me how thankful he is for me. That is all I need to hear! How great is our God to throw he and I together during this time so that we can really bond and learn from each other. As much as I miss my little ones I am learning so much about myself through this whole thing! I am learning how to be a better friend, how to stand up for myself, how to say no, how to set up boundaries, how to talk to people, and how to be a better mother in the end. Life is to short to be walked all over and David and I are both learning that.

David is quite possibly the best kid on this planet in my eyes right now, and I consider it an honor to know him and love him. He has stood up for me and defended me as his mother in more ways then I can count, and I give him major points for that, because he doesn't have to do that, but he does it because he loves me and he wants to do it. That is an honor for me. He is a great kid and I love that he is such a quiet God loving kid. He doesn't want a lot of attention or face, but he just wants to be loved and know that everyone around him is loved. We have had a good day today just him and I. We both had to face some big demons today, but together we overcame them and all will be well in the end, because together with God we can accomplish anything. We have already proven that:)

Pictures of the weekend

David happy to get an IPHONE for his birthday!

Hanging out at the pool with Aunt Dorothy and watching the little ones play in the pool!

Dave, Dad, and Mom

Dave checking out the new tint on his car!

April 18th, 2009

20 years ago today a star was born!! For the first time in many long months I genuinely felt happy today, it was a good feeling to have happiness in my heart, laugh with my son, family and friends like I haven't laughed in a long time, and just really love life. Seeing David full of smiles and fun was all I needed to make it through the day, it was just an awesome day full of God's provisions for us. Many wonderful family members and friends drove in from all over the state to celebrate today, and we started the party late yesterday afternoon and will continue it on into tomorrow afternoon. David is loving every minute of it and when he hugged me tonight and said," thank you, I love you" his words were full of emotion. It was just what he needed and I am so glad the Lord inspired Doug and I to throw this together. We had just an awesome day today! Man I am jazzed right now! Have I said that enough!!!! I will post pictures tomorrow because as jazzed as I am, I am really tired. Throwing a party like this, even though there wasn't a ton of people, still took a lot out of me.

We took all the little ones down to the pool, and all of the adults, including David enjoyed watching all of the children play and splash around. Then afterwards we had an easy dinner provided by TOGOS sandwich shop and Costco :) Easy fixing and easy clean up!! Then we had Sprinkles Cupcakes for dessert, David chose those:) And then it was present time! So many people were so generous to him this year, he was overwhelmed with gratitude! All of my family and friends went in together and got him an IPHONE as well as had his car windows tinted for him. He was very shocked and so happy. He was like a little kid again! Then after that his dad and I presented him with the DVD that I made. The first 5 minutes was all pictures of him growing up to present day with the song "Who am I" by Casting Crowns in the background, then the last 15 minutes were all the videos of well wishes that had been sent in by family and friends! We got tons of them, it was so AWESOME! He was so surprised by all who sent them in and he just sat there amazed. It was truly a great day.

After all of that settled down the younger ones watched a movie upstairs on my bed and us adults played a fun new game together, and of course the men beat the ladies! Oh well!! But Dave had lots of fun and we all just sat there with lots of happiness in our hearts. I am so glad that this day was here and that we are finally living again. That through God's grace David is living again!! Thank you Father in Heaven for providing such an awesome gift of life for our precious boy and making today so wonderful for him, he needed it and deserved it.

April 16th, 2009

Busy day today.... man oh man.... Dave just went to bed at 7pm because he was beat from the day! First things first, the CT Scan of his chest came back just fine, there was a bit of fluid around his lungs but nothing that is totally abnormal after a surgery such as his, so we are just watching it. We had the regular clinic visit, xrays, echo, and biopsy drill, but got good news that from now on we only have to go to clinic once a week and biopsys will be every other week! This was excellent news for all of us! So his mood was better today and we ordered pizza to celebrate. He also started talk therapy today, and that really helped as well, I can already see the difference. It was a really great day, I am so blessed to me the mama of this young man. I once again today just wanted to squeeze him over and over and tell him what a blessing he is in my life.

Tomorrow will be a busy day getting ready for out of town guests and getting ready for the big birthday celebration! We were both talking today and we are both looking forward to it, yesterday he was all Mr. Grouch about it, but today he said he was looking forward to it. I am a happy mommy tonight and we have agreed that tomorrow we are going to SLEEP IN! :) We have had to get up early every day this week, so that will be our reward! And then tomorrow night Doug and the kids arrive! As well as our good friends the Whites and my Aunt and Uncle! OOOHHH I can't wait! God has been so good to us!!

Surprise Birthday Gift For David

I am putting together a surprise memory DVD for David's 20th birthday this weekend. On this DVD I am including video clips from people all around that are wishing him a happy birthday or a special wish, most of these clips are coming to me via email. If anyone out there would like to participate in this please feel free to email me the video clips to my email address: bmkennedy08@att.net... thanks! P.S I told Dave he was not allowed to check the blog until after his bday:) HAHA Also if you are near me I can come to you with my video camera and catch you on it, but let me know ASAP as I plan to finish it up Friday afternoon.

Thanks!!

April 15th, 2009

We have had a quite busy week when I sit and think about it today, something has been going on everyday, and even though David has been a stinker, even he has to admit it makes the time go faster! Monday was as usual clinic day, and this time we drug dad and his siblings along with us. It was nice because Doug got to meet the doctors and nurses which was good because they are now what I refer to as our, extended family. The nurses also wanted to meet John and Claire, so that was nice as well. Then after all the clinic time and tests we grabbed lunch and the rest of the family went home... big sigh here. Yesterday David started his physical and cardiac rehab program at a hospital down the road a bit in a town called Redwood City. So we drove there yesterday morning and were there for a couple of hours, afterwards we went to Best Buy so he could spend a gift card he had and then came home. Then again he had rehab at the same place, and this will be his schedule from now on, physical and cardiac rehab every Tues and Wends in Redwood City. So something else to break up the week.

Bonnie called with the test results yesterday and everything looks pretty good, his E/F went up to 61% so at least it went up and not down. However his magnesium levels are still dropping so he is now on 12 magnesium pills a day, so she is looking into why that is going on. Another thing that they are looking into is the last couple of chest xrays have shown a density spot, and they aren't sure what it is. She didn't say much more then that other then they have been keeping an eye on it and since it hasn't gone away they now want him to have a Chest CT Scan done, so we are doing that at 7pm tonight. Bummer thing about that is nothing but fluids after 4:30 tonight, so prayers in that regard please!

Tomorrow is an all day clinic day with biopsy and he is seeing the therapist for the first time. He is being a stinker about all of his appts and really sees no point in going to any of them, thinks they are all a waste of time. So please pray for him to have a change of heart and to soften a little bit and to be able to open up tomorrow when it is just him and the therapist. It will be a long day tomorrow for him so Friday we are just resting because Saturday is the big birthday party! YEAH! He is really looking forward to that and all of the family and friends that are coming in for that.