Birthday Wishes...

I got my birthday wish today and I didnt even need to blow out the candles!!!

I had lunch outside in the sun today with Dad.

It was a wonderful afternoon that quite frankly I didn't think I get to see.

Dad

Update....6/19/2009

Update....Papa has NO MORE IV's !!!! Thats right no more, and the arterial line is out, so he officially off telemetry. Now I can take him for walks around the hospital and out to the patio for for lunch. I love that he has all this freedom now, woohoo. He is very happy to be up and getting out of his room more. We decorated his room, but still who wants to look at hospital walls all day. He is awaiting the Fourth of July..he gets front row seating on the 22nd floor of the hospital which sits right over the Charles River where they light off the fireworks, he is overly excited about this. His MD's think he should be home in time for his birthday on July 20th.

Update...in a chair

So here is dad on 6/15/09 six days after surgery. He is doing great, he received the Heartmate II VAD system and it is completely portable, he will plug into a wall at home when he is resting or sleeping and when he is up and about he will run on batteries, yes I said batteries. He will use 2 batteries at a time and they will each last about 2 hours, he has 6 total, so he can feel free to go on and live a productive life outside the hospital. He is still waiting for a heart transplant as this is called a bridge to transplant...he will finally have some quality of life back. As you can see by the pictures he is feeling better and the VAD has made a huge difference in his attitude. The first pic he is being sarcastic and making faces when I simply asked him to smile. He was up in the chair today and tolerated it well, he had his feet on the floor which is huge as he has not touched the floor in 83 days, he loved the cold tile under his feet.His appetite is coming back too, he is starting to eat more and more everyday.

Update

Papa was sitting up in a chair today and he only has on chest tube left, and that will be taken out today 6/14/09, he is doing so good, momma is excited. He practiced changing his battery again today, he is getting better at it, he will be a pro in no time. He ate most of his lunch and enjoyed the view of the Charles River for most of the morning. He is doing really good sitting up, he has some edema in his legs but that is to be expected.

Update

Dad had VAD surgery on 6/9/09 @11 am, things went really well. Dr. Magillivry was very pleased with how things went and was encouraged by how he was responding. He had the breathing tube removed this morning around 11:30 and was breathing on his own without and trouble or difficulty. Mom says he was groggy but knew they were there and was asking a lot of questions about his device and how it all works. He likes his nurses, which is more than I can say, I don't like Travis he wants no part of speaking with family however they encourage you to call 24/7, he is just rude and speaks to you as if you have no clue as to what VAD surgery is about, grrrr.

We did have more than one angel looking over our shoulder yesterday, dad had his in the OR and B and I had 2, Dr Parks who came to the waiting room to advise me on what was happening and Janice for VAD was our other angel, she was fantastic, she kept us up to date on everything all day, she calmed our fears and held our hands and gave hugs when we needed them, she was a truly welcomed part of yesterdays experiences. Kathy from heart Failure met us also in dads room after surgery to make sure he was ok and to check on Me and B, she too is a gift from god, just like Dr Parks and Janice....MGH is truly remarkable and the staff is top rate.

Twitter

Dad is offically on twitter, I will help him tweet as often as possible.

I will see to it he gets all his tweets....

@donate4life

June 7, 2009

So we made it through another weekend, dad is still waiting, they had a heart for him yesterday but it was too far away so it would not have been viable by he time it got to Boston, so we continue to wait. We met with the surgeons and heart failure teams on Friday and they were considering doing a VAD surgery for later this week, but things have changed a bit since then. VAD is a ventricular assist device which is portable life support, meaning he can get out of bed and move around but NOT leave the hospital, this is a bridge to transplant. However he started to respond to his new medication so they may hold off and just transplant when a heart becomes available. The other problem we have with the VAD is if they have to heavily transfuse him during surgery he could build up antibodies to the blood and that severely limits the heart he could receive.

June 4, 2009

I went and visited dad today, he was doing well. His mixed venous numbers were low this morning but they came back up after he was given more Dibuterine (diuretic) His blood pressure was very low today but they say that is because he was on Nitro for the past 3 days. The ectomy he has had in his heart has all but gone away, meaning he was throwing PVC’s (bad rhythm) He is more stable now, than he has been since going into the hospital, which is great news for everyone. The heart failure team was in this morning and said they had gotten nibbles on donor hearts all week but none of them proved to be the right heart for dad, so we wait until the right one comes along. Thankfully the weekend is here and weekends are always good for hearts, or so the doctors say.

Dad was excited to see the picture I brought him of Titan, we put it on the wall at his feet so he can see him, he loves him already. Dad can’t wait to meet him.

This out of order sorry...oops

Smiles all around....

Posted May 23, 2009 4:25am

I finally saw dad smile this morning, he is officially listed for transplant, ahhhh finally and just in time for the long holiday weekend. He was sarcastic when his favorite RN asked how he was feeling tonight, and he has not been sarcastic for the past9 days, so this is a huge improvement for him. He looked so much better that my sister had to text me to tell me she couldn't believe the change in him, oh and he ate his lunch and dinner again something he has not done in 9 days. Things are finally starting to look up, i will keep you all posted...

We went to visit dad in the hospital on Sunday, and we knew he was in the Cath Lab, because Ellen his RN called to let us know he would not be in his room and that the PA line they placed for surgery had to be removed immediately because It was Heparin coated and dad is allergic to Heparin and it was causing him to go in and out of Ventricular tachycardia. We arrived at MGH about 15 minutes later and called the desk to let them knowwewere in thewaiting room, and to let us know when dad was back in his room….about 10 minutes later we hear over the inter come“CODE BLUE CODE BLUE IN THE CATH LAB” we panic, Dad is in the Cath Lab! I call the nurses desk and I am told that they don’t know anything yet and as soon as they do, they will get in touch with me, about 20 minutes of sheer panic and stress goes by and we see ELLEN walking in saying it was NOT dad, she reassures me he is fine and she spoke with him, he is ok.

He gets back to his room about 2 hours later and I cry out of fear, I finally BROKE! He is in good spirits and doing well, being sarcastic and cracking jokes. I walk out of there held up by Brian as I have nothing left, I am emotionally, physically and literally EXHAUSTED, 65 days of living on the edge, now we continue to wait for a new heart and hope one arrives soon….

Welcome

This is the blog I decided to start or rather move, so that everyone can catch up on what is going on with my Dad, Paul Balthazar

quick update

Posted 2 days ago

We thought we had a heart on Friday night and we did up until a minute before surgery, when they called it off due to a bad donor heart, it would not hold a rhytham once it got back to Boston, the doctors and the balloon pump guy both said they made the right decision by not transplanting, it was a bad heart. We see him back in his room on Saturday afternoon and he is doing well and in good spirits and understands the need to call off the surgery. We went to visit him on Sunday and his nurse called to tell us he was in the Cath Lab and would be back in his room around 1pm. We arrive and wait in the waiting room only to hear CODE BLUE CODE BLUE in the CATH LAB. Can you say PANIC? We were not the only ones panicking, the whole floor was, everyone thought it was dad. They sent a nurse running down to see what was going on, she came into the waiting room about 20 minutes later to tell us it was NOT dad and she had spoken to him and reassured us he was fine. STRESSFUL 20 MINUTES!!!!!! I finally saw dad 2 hours later and just cried, I broke, that was it, he was ok…dad was ok. He is still ok and waiting for a new heart, we will get one, I know we will..this time it will be the RIGHT HEART!

Good News

Posted May 17, 2009 12:25am

We got some really good news today.... All of Dads medical bills are and will be paid in full, we have no bills!!! He is covered 100%, Can you say RELIEF???? We are waiting to hear on the relisting, but we also want him to be in prime surgical mode to do it, why risk having a stroke or worse?...best case scenario only.... no second guessing later that we should have waited, so we wait now and transplant when the time is optimal.

Posted May 17, 2009 12:24am

Dad is still not listed for transplant yer because of the **** neg read on his Heparin test..he has 3 neg borderline tests, we need one NEGATIVE only read to get him back on the list, we are hoping to have him relisted by the weekend, ugh....in other news Riley was feeling better this morning and tonight as I was leaving for work he refused his treat, which is never a good sign. B went home and made him a waffle and that seemed to work its magic and B says he was feeling better, so now we wait and see...I have had enough of waiting and hoping and seeing to last a life time, thank you very much....

Posted May 11, 2009 9:40pm

So today was not the kind of day you want when you are waiting on a heart transplant. Dad was deactivated this morning due to an allergy he developed to Heparin, causing minor blood clots in his feet, resulting in them turning blue. He was placed on a new medicine called Argatroban, hoping to get the heparin out of his system and have the test come back negative so he can be placed back on the list as early as this weekend, fingers crossed. He is doing fine otherwise; all is complicated when waiting as different things tend to arise, but you take the good with the bad as they say, one day at a time.

RELISTED

Posted May 22, 2009 1:25am

Dad's sarotonin levels came back NEGATIVE so he is relisted for transplant!!!!

Posted May 11, 2009 9:40pm

Riley was so much better today!!!! We took mom out for breakfast and enjoyed some pancakes and bacon can you say..."YUMMY!" Mom enjoyed it and so did we. After breakfast we went into Boston to see Daddy..his numbers were fantastic today...his NVO2 numbers were awesome..refers to his cardiac pulmonary output function (lung & heart pressure) His sugar and potassium were right on the money and his white blood cell count was great, and his sodium was up so he got have some ice in his diet coke....so we are looking to have him relisted in the morning, pending nothing happening over night.

sitting up

Posted Apr 27, 2009 9:41pm

Dad was sitting up and drinking DIet Coke again today. I made the solo visit in to see dad as B stayed home to get the A/C's in yeah it is hot here. Dad was happy to finally be able to sit up. He had a date with the cath lab today to change his central line, which after a brief glitch went according to plan. The plan was for him to be in the cath lab for 10am but in reality he still hadn't gone done @ 1:30, he did not enjoy this as he missed both breakfast and lunch. He did have a few new visitors today which was nice to see. I believe they stayed for a little over 3 hours, I bet dad was worn out by the time they all left. All in all dad is doing great and his mood in wonderful, if only he could get comfortable. He is expected to meet with PT tomorrow and they hope to have him up in a chair soon, ahh out of bed how nice will that be?

Posted May 11, 2009 9:40pm

My baby was sick today, I hate when he is sick it makes my heart ache. I went to Boston this morning solo, because B stayed home to make sure Riley was ok and if he did get sick, I wanted B to comfort him. I had a nice visit with dad, it was just a daddy daughter visit...relaxing and comforting. We had a nice chat and he remained upbeat and can't wait to get a new heart and continue to live life outside a hospital room.

Numbers

Posted May 11, 2009 9:39pm

Our days all depend on numbers...numbers mean everything. They decide what gets done and what gets to wait; for example...dads potassium numbers are low which means no water or ice. Fluid restriction to 1500cc's a day (32oz for the day, not alot) we monitor his white blood cell count, if the numbers are high that means infection, if too low then we monitor for other complications. We check his sugar levels, insulin or not depending again on the numbers, see where this is going...everything is on the numbers. Now we are hoping his Heparin numbers read negative so we can get him back on the transplant list. If any of the above numbers are not met everyday he can be deactivated off the list, numbers rule our world, and I am beginning to hate numbers. this is just a partial list of numbers to be met everyday, too many to count, no pun intended.

Balloon pump

Posted Apr 26, 2009 9:45pm

Dad is off the balloon pump and his heart is beating on its own!!!! Dad was successfully weaned off the balloon pump yesterday and he is holding his own, woohoo. He was finally able to sit up and enjoy a Diet Coke, this made him very happy. He is doing well now that the bleed is contained and he is reactivated and relisted for transplant, this is HUGE. We need a heart and we need one now.

Visitors

Posted Apr 15, 2009 10:47pm

Dad had 2 very important visitors today...2 transplant survivors! They were wonderful and told dad to keep being positive and told him what to expect while in the hospital and after the surgery. Ron was from upsate New York and was thankful for his surgery at Mass General, and told us how lucky we were that we had Mass General right in our back yard as he travels 3 hours each way for all his checkups. We are very lucky indeed.

Posted Apr 15, 2009 10:42pm

DAD IS LISTED #1 ON THE TRANSPLANT LIST!!!!!

better & better

Posted Apr 22, 2009 1:57am

I just spoke with dad and he sounded better than he has in 5 days, thank god!!!!Hopefully he will be relisted today or tomorrow since his labs have been stable for 24 hours...new heart here we come...

Final Test part 2

Posted Apr 15, 2009 10:41pm

Dad had the final test today at 10am...it lasted an hour and all dad was responsible for was to breathe. He had to breathe room air, 100% oxygen and O2 and NO, each for 10 min and taking a vike for 5 min in between. At first glance everything went exactly as planned but we had to wait for the final calculations to confirm that theses were good results We were told about and hour...this was at 11:00am, the waiting begins.... I called dad at 4:21pm and asked if he had heard anything yet, the answer was NO!! so we wait more. Dad called at 6:42pm and told me "I'M LISTED!!!" These are the very best words in the whole english language right now. He is listed, woohoo!!!!! I know now the real waiting begins, but getting here I feel was the hardest part..now we are on the list, not only on the list but he is #1 on the list!

Final Test

Posted Apr 15, 2009 3:09am

Dad has his final test today, it is the pulmonary function test. Cathy the NP said no matter the results he could be placed on meds to control it if needed and he would be listed soon. She was very incouraging as to what was going to happen today. I can not get over how wonderful all of the nursing staff has been, it is so comforting knowing that he is in good hands when we cannot be there. He loves the nursing staff, and doctors alike, they treat him very well. Overall dad is doing great however the waiting for all the tests results are getting to him. I would not say he is depressed but he is definately stressed. I know they say the worst part is waiting for the heart, but really the worst part has been waiting to finish all the tests just to get listed. The waiting is AWFUL, but hopefully it will be over today, and everything moves along right on schedule. The transplant team says because of his blood type the average wait is about 21 days for a new healthy heart, we can only wait and pray.

Colonoscopy

Posted Apr 13, 2009 4:47am

Dad had the colonoscopy done this morning @ 8am...we are waiting for the results, hopefully we get them Monday morning and the news is good. This is the final piece of the puzzle, all we need is for this to come back negitive and we are "all systems go for TRANSPLANT!!!" WOOHOOO!!!!

We are hopeful

Day 8

Posted Apr 11, 2009 9:40pm

Dad had a good morning followed by a "$#itty" afternoon. Dad is having a colonoscopy tomorrow morning and this is the last thing on a very long list to check off before getting officially listed as a 1A heart transplant patient. Dad had a boatload of test yesterday that ruled out everything else and clearded the way for this test...finially a light at the end of the tunnel....100 down, one to go!!!! Dad is in good spirits and is keeping himself occupied with a DVD player, movies, visitors,...

This is dad on 4/7/09, three days after after he was rushed to Marlboro Hospital.

Dad went into CHF (conjestive heart failure) last Friday night (4/4/09) and was rushed by ambulance to Marlboro Hospital. He was stablized there as best they could and then tranferred to Umass Hospital. After arriving at Umass he was deemed critical and and required the Bypap breathing assist device. He was placed on Bypap and moved to the Cardiac Cath Lab and a Balloon pump was inplanted, this assists his heart to beat, he needs this for survival, without it his heart can not support life. When he was as stable as they could get him, he was transported to Mass General, where he currently waits for a new heart. His nursing staff is FANTASTIC!!!! MD's WONDERFUL!!! Cardiac transplant team...AWESOME!! Social services...OUTSTANDING!!!

.

My dad almost died on 4/4/09 he went into CHF and never recovered. He is in the Cardiac Care Unit at Mass General Hospital and will remain there until he gets a new heart. He is waiting patiently on the heart transplant list. He went into the hospital on 4/4/09 weighing 227lbs and now less than 3 weeks later he weighs in at 175lbs...all fluid, he was literally drowning in fluid. The blue machine is called a balloon pump and is keeping him alive till he gets a new heart. Please say a prayer for him as he could use all he can get. I believe he survived Friday night because he was destined to live and continue on with his life, he has made it so far, however we have had a few setbacks along the way...he had a massive bleed on 4/19 that has now resulted in him being placed on the deactivated transplant list until his white blood cell count returns to normal. I spoke with his nurse Ellen a little while ago and she confirmed that the count is returning to normal and he will be re listed soon. waiting patiently on the heart transplant list. He went into the hospital on 4/4/09 weighing 227lbs and now less than 3 weeks later he weighs in at 175lbs...all fluid, he was literally drowning in fluid. The blue machine is called a balloon pump and is keeping him alive till he gets a new heart. Please say a prayer for him as he could use all he can get. I believe he survived Friday night because he was destined to live and continue on with his life, he has made it so far, however we have had a few setbacks along the way...he had a massive bleed on 4/19 that has now resulted in him being placed on the deactivated transplant list until his white blood cell count returns to normal. I spoke with his nurse Ellen a little while ago and she confirmed that the count is returning to normal and he will be re listed soon.