|Michalyn, 4 years post-second heart transplant|
|Michalyn and her family|
|Michalyn before second heart transplant (age 9)|
|Michalyn after her second transplant, on her 10th birthday|
|2 years after her second transplant (2005)|
Before first transplant
After first transplant
Everything went fine so Michalyn went home to be with her family back in Wyoming. While Michalyn was at home, her daddy became very worried about her. She stopped eating and wasn't gaining weight. It came to the point when Michalyn had to be fed my NG tube. As the days passed Michalyn got worse. She was in severe heart failure, and that caused her liver to swell. At the age of three months Michalyn went to see her heart doctors, It was then that they said what everyone in Michalyn's family feared: her donor valve was being rejected and she wasn't going to make it much longer without a new heart. Bill took Michalyn back to Wyoming to see her family after the bad news. The next day they were back in Utah at PMCH to prepare for what was to come. When they got there they did a complete work-up to get our sweet girl on the transplant list. She waited for 5 months, barely holding on, and on May 28,1997 Michalyn got her second chance. After getting to the hospital, Michalyn was taken from her family, but she would be coming back with a brand new heart and a second chance to live. Michalyn's heart transplant surgery lasted from 8:00pm-6:30am and when they saw her, for the first time Michalyn had pink skin and started to look like herself again.
I met Michalyn in 2000, when she was five years old. She and her little brother Ashton came to live with their daddy and me in 2003. Michalyn managed her life as a transplant patient very well. She was involved in softball, and she loved hanging out with her friends and having slumber parties. Michalyn loved her life.
On November 12, 2004, Michalyn (now 9) went in for her annual heart cath and biopsy. My husband and I knew immediately that something was wrong as we watched Dr. Day walk down the hall toward us. He told us Michalyn's heart had developed a disease known as Coronary Artery Disease and that it was affecting the left side of her heart. Michalyn's team of doctors were concerned about it, but we were grateful they caught it when they did. They put her on a medication called Rapamune (it has been known to stop and sometimes reverse the effects of CAD). Less than a week later we had to immediately take Michalyn off this med as she was having a severe reaction to it. Her lips and mouth swelled up, causing huge painful blisters. After she healed up from the reaction they decided to try and give it to her one more time. But yet again my little girl's mouth swelled up and she was taken off of it again. At this point they just put her back on her regular medication called Cellcept. This concerned all of as we knew that the Cellcept wasn't going to treat the CAD like the Rapamune did. Not being on the Rapamune meant my baby's condition could worsen.
On April 12,2005, Michalyn had another heart cath to see if her arteries were getting any better. We found out that her left side was improving. But what we didn't understand was that it was now affecting the right side of my babies? heart. Dr. Shaddy and his team decided that the best thing for Michalyn would be a new heart. Michalyn needed another heart transplant. On April 19, 2005, Michalyn has surgery to have a stent placed in one of the narrowing arteries on the right side of her heart. Dr. Shaddy was honest with us and said he wasn't sure Michalyn would make it to another transplant without this surgery. It was hard to watch my daughter go through all of this. But somehow knowing we would fight this together made it easier to look ahead to our future.
To me, Michalyn is the strongest kiddo I have ever met. It was now time to tell Michalyn about her getting a new heart and what we would be going through to get her healthy again. Bill and I weren't sure how we would tell her. But we sat her down together and told her about her heart and what our future might hold for us. Michalyn was at ease with the whole thing. I think her only worry at the time was how much school she would miss. I think she knew in her heart that she needed this surgery, and I knew in mine that we needed a miracle.
Michalyn's doctors were working hard to get our little girl on the list. On July 3, 2005 Michalyn was finally put on the transplant list. We were all so happy about the good news. Michalyn had many ups and downs as she waited for her heart. She was struggling with headaches, abdominal pain and she just became tired. She was sleeping a lot and was so sad that she wasn't back home in Wyoming, as she was waiting for her new heart in Utah, three hours away. Michalyn's team of doctors watched her closely because she was showing signs that her condition was worsening. On September 26, 2005, we got the call we were waiting for. When the call came in we were immediately on our way to Salt Lake to be with our little girl. On our way we stayed in contact with Michalyn's team, giving them the consent they needed to start the process for our little girl's transplant. When we got there Michalyn was waiting for us in the ICU. That is where we would wait until they came to take my angel. We played games, Drew pictures, and watched movies until 5:00pm when they said it was time. As we walked her down the hall to the operating room, so much went through my mind. And then it was time for HUGS & KISSES, for I feared it might be our last. When it was my turn I didn't want to let go, but I had to be strong for her. She smiled as we waived good-bye and we smiled right back at her.
Michalyn was placed back into the ICU after her transplant. There she had quite a few problems. On September 27, 2005 Bill took the boys to get something to eat, and to just get them out of the hospital for a little bit. I sat and watched Michalyn as she laid there all hooked up to machines and the tubes with all of the blood coming out of them. Since the transplant the day before, Michalyn was bleeding a lot and had her surgeon puzzled. So he decided to do OHS to see what was happening to her. Again I just wanted to hug her and not let go. I didn't know what was happening so I called my husband and he rushed back to PMCH. Two hours later her surgeon came with news, and our prayers had been answered again. He said Michalyn has severe clotting around her heart and she was bleeding from everywhere. Now that it was fixed he felt she would recover nicely. And he was right about her heart. Soon after she started to recover Michalyn's kidneys started to fail. Her body swelled up and she was in so much pain. We tried to keep her pain managed as well as we could be she just hurt everywhere. Michalyn's medicines were adjusted and she was placed on a diuretic. Soon her kidneys stated to improve and the swelling went away. She was beginning to look like Michalyn again. Except for the cute puffiness she now had from the high doses of prednisone (a steroid).
Michalyn was weak and pale. She was hooked up to a bunch of machines administering high doses of anti-rejection, pain, diuretics, and many other medications. Michalyn was in the ICU for 13 days, until October 8, 2005 (her 10th Birthday). We planned a party for her so it was a nice surprise to have her party on the 3rd floor. Plus it was a step in the right direction for her recovery. I helped Michalyn get all ready for her party and then we went up to our new room. When we got there everyone was so happy to see Michalyn. We quickly decorated her room for a Bratz birthday party. We gathered the nurses, and sang Happy Birthday to my now-10 year old daughter. I watched her open her gifts with the biggest smile I had seen since her surgery and I knew from that moment that she was going to be ok. Michalyn was happy to see her family. And she made up for lost time with her brothers. It was our happiest day so far.
Now that Michalyn was on the 3rd floor the rules weren't as strict and I was finally allowed to spend the night with my girly. She was awake more often and being weaned off of the pain meds. She didn't want to be alone and missed us at night. So I stayed with her. We filled the long hours in the hospital with games and movies. I brought her things from home so her room was filled with things she loved. We loved playing board games and making crafts according to the holidays we spent there.
On October 14, Dr. Day did another heart cath and he found that Michalyn's heart was in slight rejection. Michalyn was placed back into the ICU and we started all over again. On October 16, Michalyn had x-rays, and they found that she had fluid building around her right lung. Nothing helped get rid of the fluid so Michalyn had a chest tube placed. They allowed us to be with her while they did the procedure and it helped her get through it. She is such a brave girl! We had a small Halloween party for Michalyn on the 19th. But Michalyn didn't feel well, she was miserable when she was in the ICU. I tried everything to keep her smiling. On October 20 they took the chest tube out and I couldn't believe how fast she bounced back. Then they found more fluid and the chest tube was back in for a second time in 2 days. I watched and helped my girl through it again. I know she didn't want it but we had to get the fluid out of her body. Michalyn was moved back to the 3rd floor on the 22nd. And then we were released on October 26, 2005, exactly one month after her heart transplant. Michalyn was so happy. We packed her stuff and then she was back in the Ronald McDonald House for the remainder of her recovery. Michalyn recovered under PMCH's care for 3 more months. We were released to go home to Wyoming on January 1, 2006. It was the happiest day of our lives. WE ARE GOING HOME!
Michalyn was home schooled for the 2005-2006 school year and was back at her regular school (Monroe Middle School) the following year. Michalyn is now 12 years old, and almost 3 years post-transplant. Michalyn has stayed pretty healthy since her transplant, only having 1 hospitalization in 2007. Michalyn was admitted to PMCH in October of 2007 for pneumonia and was released a week later on high doses of steroids. She was out of school for nearly 4 weeks. And I was giving her 2500 mg. of Rocephin through a PICC line that PMCH placed before we were released.
Michalyn also was diagnosed with a moderate heart rejection in November, 2007. She was given high doses of prednisone to treat her rejection was given.5 mg. of steroids, as well as her regular heart medications.
October 2009 Update
Since November 2007 Michalyn has tried very hard to stay in good health. She has had a couple slight rejections. The causes of the rejections were found in January 2009 when her NEW heart was also diagnosed with coronary artery disease. We are now faced with whether or not Michalyn will need a future third heart transplant. Since her last heart transplant, CHD research has found a medication (pravastatin) to help reverse and possibly stop the CAD from spreading around her heart. And so far we have been so lucky with the treatment, and are happy to say that Michalyn is doing well. We continue her care with primary Children’s and we now have another facility following Michalyn’s case at Loma Linda in California. We don’t know if a 3rd heart transplant is in our future with our daughter but we are ready for whatever battle is next…
Michalyn is a BLESSING—she loves school and enjoys spending time with me and helping in our fight to spread awareness about congenital heart defects. Michalyn is my life and I give my heart to the two donors that gave my little girl two chances at LIFE.
November 2011 Update
From our last update in January 2009 until now, November 4, 2011 our Lives have
been turned upside down with our sweet Michalyn...
In March 2010, our family (Michalyn, me and our boys got mono) and Michalyn's life was never the same. We all recovered from the illness, but Michalyn had a secret.; a secret even she didn't know about. The mono continued to change Michalyn, She became weak easily and got sick even more often... not even the Doctors knew about the mono that remained in her body. In May of 2010 Michalyn had a her annual heart cath. And when she came out, she was on a breathing tube and major heart meds, saving her life. They couldn't believe she walked through those doors on her own. The mono had been attacking her heart for months and we didn't even know if she would ever open her eyes again. Dr. Everett wasn't sure how, but the mono had been attacking her heart causing her liver and kidneys to also be weakened and compromised.
Michalyn opened her eyes shortly while we started to make the dreaded phone calls to friends and family, and immediately Michalyn's LIFE plan had changed right before our eyes.(Bill, Uncle Fell, Aunt Hollie stood there in amazement)...And then of course I was notified and was right at her side!!!! WHERE I BELONGED!
Michalyn was put on a pheresis machine, where they took the pheresis component out of her blood and replaced it with clean healthy bags of donor stuff. At those moments I now realized just how much she loved to LIVE! even on this machine and many meds, she never let go of her cell phone.(a cell phone I now hold in my purse, one I call but there is no answer just a voice mail). She called all her friends all the time and made the best out of what was our worst scare yet. She had an amazing attitude and I will never forget the good times that were made there because of her. That weekend we talked of strength, how much it meant to her and to us. How much of it she carried in her soul--and then came along the STRENGTH tattoos. First Daddy and I and then family and friends closest to her got them and don't regret the moment for a second.
Michalyn got better every day and eventually we were released again with our Daughter. She had a new heart beat (which was ok); it was just her new heart beat..... and it worked for her. After the mono attacked they expected more damage but that was all we could see.
While Michalyn was hospitalized they told us that she had another disease as well that we would monitor and she would do IV meds for. PLTD is a form of cancer that heart transplant meds sometimes give to the patients. So we knew soon a head we would have many battles......
After she was released things went back to normal. Michalyn became a HIGH SCHOOL STUDENT. She loved her freshman year. She went to her 1st homecoming dance with her BFF Kenzie... she made the most of her summer 2009 and her freshman year in 2010.As school went on I think Michalyn became weaker. She had pneumonia and had a hard winter of sickness, but nothing we thought would be out of the ordinary to us. We had a a deal with our daughter (if she couldn't do the satires at school, then we knew it was time to go to the doctor) and for a very long time that worked she told us each time, and that was used as a marker that she was starting to get sick. We caught her illnesses early by asking that one simple question.
In December she didn't feel well for most of the month, but none of us did. We
got the flu and then Michalyn got the flu, the weekend I started feeling better.
She went to the doctor the next day -- December 16, 2010. Michalyn went from flu
to barely alive within a few hours and was rushed to the ER where she died.
Where I last held her hand and kissed her good bye. Her daddy right by her side
the whole time, and me just 5 long minutes too late!
Michalyn passed from pneumonia with an underlying condition called sepsis.
She will never be forgotten, she is loved by to many for that. She taught many
of us lessons and still does and as we mourn her loss. Eleven months have nearly
gone by, and our family is still hurting and trying to make sense of this. We
mourn her loss and we celebrate parts of her life for her. Her mother and I make
sure she isn't lost or forgotten but loved more with each day. I am sad and not
looking forward to her 1st angel-versary, but I will think of you, my child.
Michalyn Shontel Robinson
OUR BELOVED DAUGHTER
FOREVER IN OUR HEARTS,
SHE MADE MORE THAN AN IMPACT ON JUST MY LIFE BUT TO ANYONE SHE MET.
OCT-8-1995 TIL DEC-16-2010
Michalyn's Parents <3 ALWAYS
Bill and Tara
Jeremy and Amber