| Subject: | update |
| Date: | 06/03/2005 |
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Missy has also been back up to UCLA for more biopsies. All of them have come back clean. (No rejection) Please keep praying that her body doesn't reject her heart. Thank you to everybody for the love and prayers. They have obviously worked. |
| Subject: | Welcome Home Missy |
| Date: | 05/20/2005 |
| Entry Contents: | We are extremely excited to let you all know that Missy is finally home. She is extremely happy to be back home where she belongs. She is getting stronger every day. Thanks to all of you, she could barely walk into her bedroom because of all of the kind and loving gifts you sent. We are the happiest and proudest parents in the world! Missy has truly suprised the doctors with her strength and the speed of her recovery. Thank you for all of your prayers. They obviously worked. Please continue to pray that her body does not reject the heart and please pray for the family who lost their 26 year old daughter and still were able to give us such an incredible gift. We are so very grateful to everyone. Thank you again! |
| Subject: | Thank you!!! |
| Date: | 05/10/2005 |
| Entry Contents: |
We wanted to thank everybody so much for everything you have done for us. Thank you to the wonderful people who are busily planning an organ donation information night and fundraiser in Missy's honor. Missy and I really feel that informing everybody about organ donation is our calling. As one of my best friends said "God is putting you through this Aimee, because of your big mouth. He knew the message would get out!" Thank you to TVSA for the book drive, all of your support and for helping me keep my team together while I'm away. Thank you to everybody who has donated gifts, gift cards, books, laptops, etc. to Missy for her recovery. Kirk says there isn't even room to walk in her bedroom. He brings up a few things each weekend. We are so very grateful. Missy is so grateful for things to do. She misses everbody at home (even her brother!) She is feeling so great, she is getting bored already. The doctors said today that she is doing phenomenally (spelling?) well. They are so pleased and so are we. Thank you to our wonderful friends and teachers who are keeping our other kids busy, loved and out of trouble! Mrs. Jimenez, Ms. Pulsipher, Mrs. Papagolos and the rest of the fabulous teachers at Paloma, we couldn't do it without you! We will do our best to get individual thank you notes out but it has been so overwhelming I'm afraid we may miss a few of you. Thank you again to everybody! |
| Subject: | www.donateLIFEcalifornia.org |
| Date: | 05/10/2005 |
| Entry Contents: | Hi Everyone. I have found out that filling out the pink card and carrying it with your drivers license is not enough to make sure that your organs are donated. You need to go to www.donateLIFEcalifornia.org and complete the online registration form. Please use Missy as your inspiration and donate the most precious gift any of us can give. We are so incredibly grateful for the gift we were given and if the only way we can give back is to inform people about organ donation, then that is what we will do. Thanks for everything. Attached is a picture of Missy and Papa celebrating her first outing in the cafeteria Mom ate at for weeks. |
| Subject: | 5-8-05 |
| Date: | 05/09/2005 |
| Entry Contents: | Happy Mother's Day! It was a fantastic Mother's Day with the whole family together. It is getting harder to have to leave at the end of the day Sunday and be separated all week. |
| Subject: | 5-7-05 |
| Date: | 05/09/2005 |
| Entry Contents: | Missy continues to get stronger every day. Dad had a baseball game at his old high school and Mom and Missy were able to come. It is great on the weekends when we can all be together again. |
| Subject: | |
| Date: | 05/06/2005 |
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| Subject: | |
| Date: | 05/06/2005 |
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| Subject: | more pictures |
| Date: | 05/06/2005 |
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| Subject: | We're Free!! |
| Date: | 05/06/2005 |
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| Subject: | 5-5-05 |
| Date: | 05/05/2005 |
| Entry Contents: | Missy's biopsy went well. Her PA pressures were good. Her blood pressure was slightly elevated. They are going to increase the number of times a day she takes one of the medicines and decrease the number of times she takes another one. We have learned that this will be a regular occurance. With every drug, there is a side affect, the "benefit and risk" of each drug is weighed and then adjustments are made as necessary. Miisy and mom have tentatively nothing scheduled for tomorrow. This hopefully will be a great opportunity to get some peace and quiet. We should find out the full results of the biopsy tomorrow. |
| Subject: | 5-4-05 |
| Date: | 05/04/2005 |
| Entry Contents: |
Missy was released from the hospital early this evening! It has been 27 days since she has entered the hospital and 17 days since the transplant. Mom and Missy are currently staying at Tiverton House, a UCLA owned hotel across the street from the hospital. They have to be back at the hospital at 6:30 in the morning for Missy's second biopsy. The afternoon was spent going over the medications, that Missy will be on, with one of the transplant coordinators. There are currently 13 different medications that Missy will be taking on a daily basis. Over the course of the first year, most of these will be weened and eventually not have to be taken. There will be 3 or 4 medications that Missy will be taking forever. These medications are well worth it. Mom and Missy enjoyed a pizza delivered to the room and will be enjoying the comforts of the room. For Mom, this will be the first real bed she has slept in in almost a month. |
| Subject: | 5-3-05 |
| Date: | 05/03/2005 |
| Entry Contents: | Missy is still on schedule to be released tomorrow. She got to walk outside today for the first time since she was admitted to UCLA on April 7th. She also had her pacer wires removed. These wires were put in at the time of surgery for an outside pacemaker. She had not used the pacemaker for quite a while now but the wires were there in case they were needed. Mom, Dad and Missy also had discharge training today. |
| Subject: | 5-2-05 |
| Date: | 05/02/2005 |
| Entry Contents: | Missy continues to get stronger by the day. They removed her oxygen today. She was able to go down to the lobby of the hospital. The plan is for her to be released from the hospital on Wednesday. The hospital is going to start the discharge training tomorrow. Her second biopsy is scheduled for Thursday, but she does not need to be in the hospital for that. Mom and Missy will be staying near UCLA for the next several weeks at least as Missy will need to be checked by the doctors quite often at first. |
| Subject: | 5-01-05 |
| Date: | 05/01/2005 |
| Entry Contents: | Missy was moved to a regular room from the PICU today! The only probelm was that it was at 2:30 in the morning. They had talked about moving Missy to a regular room today or Monday after she was removed from the PGE medication yesterday and her echo was very good, but a need arose for her bed in the PICU in the middle of the night, so out she went. She had a very good weekend and the doctors said they were going to start discharge training with mom and Missy on Monday. We have learned that that is Monday hospital time which means Monday or Tuesday or etc. We are still taking everything one day at a time, but everyone is encouraged by Missy's progress. It was just two weeks ago today that she had her heart transplant. |
| Subject: | 4-30-05 |
| Date: | 05/01/2005 |
| Entry Contents: |
The doctor's turned the drug PGE off in the morning. This drug was helping the PA pressures. In the afternoon, they performed an echocardiagram, same as a sonagram, on Missy's heart to check the pressures since the PGE was turned off. Her pressures were very good. They did not rise at all and in fact went down slightly from her last echo. Missy was up walking in the halls for quite a while until the doctor's made her come back in for her echo. Dad came up with the kids. It is nice when we are all together. It has been the weekend ritual the last few weekends for Dad and the other kids to go up on Saturday, spend the day with Mom and Missy, then spend the night with "Uncle John and Aunt Karen" Saturday night, go back to the hospital and spend the day Sunday and then Dad and the other kids head home. |
| Subject: | 4-29-05 |
| Date: | 04/29/2005 |
| Entry Contents: |
Today was a fairly quiet day for Missy. There were no major tests or anything like that today. They are continuing to ween her off of her last PA medication, PGE. It is supposed to be completely off sometime over night. Missy is showing some attitued, whick is a good thing. She wants to get out of the hospital. That is also a good thing. The doctors are taking everything one day at a time. We are continually amazed and humbled by everyone's prayers and well wishes for Missy and our family. Today, our neighbor James and his wife Tamara brought over a laptop for Missy to use while she is in the hospital and her recovery away from home. Missy is very excited about this. We cannot express our gratitude enough to everyone. There is not enough room to mention everyone and we know we would forget some people. So for now, all we can say is thank you again and again. |
| Subject: | 4-28-05 |
| Date: | 04/28/2005 |
| Entry Contents: |
Missy was moved out of the Cardio Thoracic ICU today to the PICU (Pediatric Intensive Care Unit). This is one more positive step. In addition, we got the results from her Biopsy yesterday. As the doctor said, "it was clean as a whistle". This obviously was a big relief. We know there are seven more to go the first year, but the first one was good. Aslo, dad went to the hospital today and saw Missy and mom. Both are doing good. It was good to for all. Another positive about moving to the PICU is that Missy has a phone in her room so she will be able to talk wioth her family and friends. |
| Subject: | 4-27-05 |
| Date: | 04/27/2005 |
| Entry Contents: | Missy had her first of 8 biopsies today. She handled everything well. They are looking for any signs of rejection. They will be checking the white blood cell count. The results will not be available until late tomorrow or more likely Friday. They also checked her pressures and they were good. She was just given a mild sedative. Since the surgery, Missy has had something called a "Swan" in her neck. This is a catheter that goes from the neck directly into the heart. This is how they have been measuring her vitals, blood pressure, PA pressures, heart rate, etc. That is also how they performed the biopsy today. Thet did remove the Swan after todays biopsy. |
| Subject: | 4-26-05 |
| Date: | 04/26/2005 |
| Entry Contents: |
Today was another good day in Missy's recovery. She was successfully weened off of the Nitric Oxide. This not only removes one of the medicines that Missy was receiving, removing this allows Missy a lot more freedom. She was walking down the hallways of ICU this afternoon! Tomorrow the first biopsy is scheduled. I would also like to take a minute to remind everyone that this is Organ Donor Awareness month. Through someone's tragedy, others receive a second chance through the most precious gift that anyone could ever imagine. There is now a website where you can sign up to be a donor. This is in addition to the pink dot that many people have on their drivers license. Less than 5% of the pink dots are ever seen. This site, www.donateLIFEcalifornia.org is the first place emergency officials go to to see if someone is an organ donor. Your information is kept confidential and secure and can only be viewed by authorized organ and tissue recovery personnel. Thank you again for your many well wishes and prayers. |
| Subject: | 4-25-05 |
| Date: | 04/25/2005 |
| Entry Contents: |
The biopsy that was supposed to happen today did not. It was scheduled for Wednesday. The doctore were hoping to be able to get it moved to today, but they were not. It will take place Wednesday. Missy continues to get stronger. She had a Subway sandwich for lunch, which she requested and Teriyaki Chicken for dinner. Her pressures remain very good and the heart is very strong. |
| Subject: | 4-24-05 |
| Date: | 04/24/2005 |
| Entry Contents: | Missy is getting stronger every day. She is less nautious and all food restrictions have been removed. Her brother and sisters again get to visit. She is getting out of bed more regularly. She is still receiving the Nitric through the nose. She is no longer taking any pain medications. Missy is having her first heart biopsy tomorrow, Monday 4-25-05. She will be having 8 biopsies the first year. 4 the first two months and 4 the rest of the year. They will be looking for any signs of rejection. Today is the first day that Missy's new heart has not been paced. It is beating very strong at about 110 beats per minute. |
| Subject: | 4-23-05 |
| Date: | 04/24/2005 |
| Entry Contents: | Missy is getting stronger. She is getting out of bed to use the commode. She is sitting in a chair. She is eating clear liquids. More medications are removed. She still is week and does not have much of an appetite but is doing well. She is really beginning to look like the Missy of old. Missy's brother and sisters get to see her as well as several friends and relatives. Support from friends, family and the community and schools of Temecula have been truly amazing. We are truly humbled by all of the wishes and prayers that we have received. We feel truly blessed to have so much love and support, it is truly unbelievable and is not going unnoticed by any means. |
| Subject: | 4-22-05 |
| Date: | 04/24/2005 |
| Entry Contents: | The doctors are given permission to administer the Nitric through the nose. As far as the doctors are aware, this is the first time this has happened at UCLA. The breathing tube is removed! In anticipation of this, Missy was not sedated overnight. This did make for a very uncomfortable night. Missy's heart is doing well. The pressures are looking good, both blood and PA. Missy is feeling somewhat nautious from all of the medications. |
| Subject: | 4-21-05 |
| Date: | 04/24/2005 |
| Entry Contents: | Missy is weened down to 2 ppm on the Nitric Oxide. The heart is doing well. The PA pressures are very stable on the Nitric. The doctor's want to move very cautiously on the Nitric so as to not repeat what happened last time. They also want the breathing tube removed to remove a chance of infection being introduced through the breathing tube. We learn that the doctor's two favorite sayings are "cautiously optimistic" and "benefit and risk". Mom is doing fantastic even though she has been at the hospital since April 7th. Missy is doing well. She is still sedated. Dad is not doing to well. He is feeling helpless. Dad heads back to Temecula to be with the other kids who have been staying with friends since Saturday night. The doctors decide to consult an adult pulminologist to discuss Missy's PA pressures and the Nitric Oxide. In the afternoon, the pulminologist says there is a way to keep Missy on the Nitric and remove the breathing tube. They can administer the Nitric through the nose. The problem is UCLA medical center does not use this practice. They have to go to the president of the hospital and ask him for permission. |
| Subject: | 4-20-05 |
| Date: | 04/24/2005 |
| Entry Contents: |
Today, the doctor's want to continue to try and ween Missy off of the Nitric Oxide. As long as she is receiving the Nitric Oxide, she needs the breathing tube. This is the only reason that the breating tube needs to remain in place. We discuss with the doctors the episode that took place the day before. The tell us they got a little aggressive in trying to remove the Nitric. Everything was going so well, they just moved a little too quickly. The heart itself is doing very well. Missy's new heart is still being paced to keep up the heart rate. Missy's brother Brandon and sister Allie come to the hospital. Unfortunately sister Kelly is not feeling well and has to stay in Temecula. Mom has not had much time with the kids since Missy was in the hospital. Brandon gets to see Missy and even though she is sedated she gives Brandon a thumbs up. |
| Subject: | 4-19-05 |
| Date: | 04/24/2005 |
| Entry Contents: | Over night, the Nitric Oxide is weened from 10 ppm to 2 ppm. The plan for today is to try and ween Missy off of the Nitric Oxide so the breathing tube may be removed. Missy is still sedated and being given Versed, an amnesia drug so that she will not remember any of this. The Nitric Oxide is weened to 1 ppm and then .7 ppm. Missy's PA pressures are looking good. They decide to turn off the Nitric Oxide. Within 5 minutes, Missy's PA pressures skyrocket and blood pressures plummet. They turn the Nitric Oxide back to 20 ppm and get Missy stableized. This was a very scary episode, but unfortuneatly, not a totally unexpected one. The doctors had hoped that Missy would not need any additional medicines to control the PA pressures once she leaves the hospital, but this is now not the case. We are told there is no permanent damage to the lungs and that the PA pressures will over time adjust, but in the interim she will need to take medications to help control the PA pressures. The doctor's now start Missy on some other medications to help control the PA pressures while keeping Missy on the Nitric Oxide. Late in the evening, a surgeon removes Missy's chest tubes. |
| Subject: | 4-18-05 |
| Date: | 04/24/2005 |
| Entry Contents: | In addition to all of the medication that all heart transplant patients are on, Missy is taking Nitric Oxide through her breathing tubes to help her pulmonary artery (PA) pressures. The focus for the day is to let Missy's body start healing and start weening her off the Nitric Oxide. As long as Missy is taking the Nitric Oxide, she will need to have the breathing tube. The Nitric Oxide is initialy set at 40 parts per million after surgery. The day is pent weening her down to 10 ppm. |
| Subject: | The Big Day-4-17-05 |
| Date: | 04/24/2005 |
| Entry Contents: |
We now know that the heart that we have been waiting for for Missy will be today. At 1:00 in the morning they call back to say it will be about 4:00a.m. that Missy will go down. Dad takes a nap. By this time Mom has some support by some friends that came up from Temecula and her step-sister. Kirk's brother and family from Orange County also come by to give their support. Missy is finally taken down to the operating room at 5:00 a.m. Sunday, April 17th, 2005. The waitng game begins. We ar told we will get update from the nurse and variou times. The first call comes at 7:00. The first incision was made on Missy at 6:25 a.m. The heart will be arriving at 7:15. The next call comes at around 9:00. The new heart is in and being sewn in place. She is still on by-pass at this time. About an hour later, another call comes. Missy is off of by-pass. Everything is going well. At 10:30, Dr. Lax comes out and says the surgery is over and everything went well. Needless to say, hugs and kisses all around and a huge sighs. We will be able to see Missy in a couple of hours. We get to see Missy at around 1:00 p.m. She is looking good. She is heavily sedated and the plan for the day is to monitor everything! We have been told that the donor was a 26 year old female. This is all that we will be told. Because of Missy's heart disease (restrictive cardimyopthy) and the resulting PA pressures, the doctors were looking for a larger heart. Missy's disease made her chest cavity larger than normal for someone her age and will have no trouble accomodating an adult haert. This should also help to be able to accept her highe PA pressures. |
| Subject: | Update 4-16-2005 |
| Date: | 04/24/2005 |
| Entry Contents: | Saturday afternoon Aimee gets a call from Missy's cardiologist Dr. Alejos saying they think they have a heart. This is the first time that they have called us saying they think they have a heart. It will be a couple of hours before we know for sure. We do not tell Missy yet in case it is not the right heart. At around 7:00 p.m., the doctor calls back and says it is a go. There is a very slim chance that it will not go through. UCLA sends a team to harvest the heart. If they decide that it is not right, they will turn it down. They say that this is less than a 5% chance. We decide to tell Missy. She takes the news very well. They immediately put her on NPO (no food or water) and say it will be several hours before we hear anything. They call at ten and say they think it will be around 1:00 a.m. when Missy will go to the operating room. Not sure about the time because they are harvesting other organs as well. What does Missy do? Our brave little girl goes to sleep. |
| Subject: | Update-4-15-2005 |
| Date: | 04/24/2005 |
| Entry Contents: | Missy has been in the hospital for just over a week. We have been told that UCLA has been offered three hearts for Missy but has turned them down each time for various reasons (unknown to us). They tell us the day after. The doctor's feel that they have the luxury of time in selecting the perfect heart for Missy. |
| Subject: | Update |
| Date: | 04/07/2005 |
| Entry Contents: | Missy is being admitted to UCLA today. Her heart is not holding out as well as we had hoped. We went to UCLA on Tuesday and they said she is in the top three on the list. As soon as they get her admitted her priority will go up even more. Hopefully we won't have to wait too long for a heart. Missy is very brave and our family is ready to start this adventure. Thank everybody for their love and support. |
| Subject: | 4/1/05 short update |
| Date: | 04/01/2005 |
| Entry Contents: |
We are still waiting patiently for a heart. Things have changed somewhat. Missy is very tired and now having to use oxygen at home to help bring down her pulmonary artery pressures. She is not happy about it at all. We spent a fantastic Easter with family. We have tried to have a relaxing spring break. Missy had a great time when we went to Palm Springs for a couple of days. It was really nice for her to be able to relax in and by the pool. Due to the affect of her anti-rejection medications imparing her immune system, she won't be able to swim in any of our public pools after her surgery. She has another doctor's appointment at UCLA next week. Dr. Alejos is checking her status on the waiting list. Hopefully we will find out more then. The doctors have been debating about admitting Missy to the hospital to wait for her heart. They need to keep control of her pulmonary pressures or we could lose her lungs too. We are praying she won't have to be admitted for a while, but we will cross that bridge when we get to it. We are still eternally grateful for all of the love and support of our friends, family and the people of Temecula. |
