Today, as a tribute, I thought it would be cool to re-post what my parents posted four years ago at the time of my transplant. Once my health started spiraling out of control, I had acquired a Caringbridge website that my parents and myself regularly posted on. The following posts recorded their feelings, point of views, and thoughts during my transplant (finally a point of view that isn't mine!). It's a little bit of a read; my mom likes to write a lot but personally, I find it interesting since I was unconscious throughout it all.
July 6, 2009 3:03 AM
We received the call tonight that they found a heart for Shelby. We are at Denver Children's Hospital in the CICU waiting to hear from the transplant team that everything is a go. If so, Shelby will probably be going to surgery around 7am Monday morning. Shelby is hanging in there. She is obviously really nervous. We are watching Harry Potter and trying to get some sleep before morning. We appreciate everyone's prayers at this time. We will keep you posted throughout the day.
July 6, 2009 11:08 AM
Shelby is in surgery now. The transplant surgeon said the new heart is on its way. As we pray for Shelby please say a prayer for the donor family as well.
July 6 2009 1:05 PM
Her nurse said they just opened Shelby's chest and that her new heart is in transit, but they don't know when it will get here yet. We don't even know where it's coming from. As we're updated by her surgical team we'll update Shelby's journal. Brad (my dad) and I (I as in my mom) are anxious... nervous... excited... scared... hopeful... worried. There are better words, but I can't think what they are right now.
Trying to calm our nervous, Shelby's surgeon assured us that the surgery itself has become more and more routine over the years and actually the hard part is after transplant. Ok, whatever. It's still major open heart surgery to us. I don't know... I'm thinking a heart transplant would probably be the majorist of all open heart surgeries???? Daddy and I remain pretty nervous. Brad's squeezing a squishy stress ball while watching Get Smart over and over again. I'm typing. Sorry guys... get ready for nervous rambling.
However, our Miss Shelby was actually pretty calm about the whole thing. After getting to the hospital late last night, she curled up in her hospital bed here in the cardiac ICU and watched "Get Smart" until she fell asleep. Then early this morning she was woken up around 5 am for a body scrub. Shelby tried to do it herself but she finally had to let the nurse help her. Afterwards she just settled down and went right back to sleep. Daddy snuggled up to her until the anesthesiologist came to start the sleepy drugs about an hour and half later. In her slowly increasing brain fog she started to cry. "Don't forget to give me ice chips afterwards... and swish my mouth out with the mouth sponge so it doesn't get dry...", she tells daddy. She snuggled into her giant white Valentine bear and held on to Uncle Bills stuffed doggie, Teddy. She wanted Daddy to come into the surgery room with her, but he wasn't allowed. However, the sedation took away any frantic feelings she would have had if she were fully awake, and left a sleeping sort of quiet weeping.
Next post will be when Shelby's heart is on it's way from the airport. :-)
July 6, 2009 2:51 PM
Her nurse has been periodically assuring us that Shelby is doing really really good and the OR room was mellow with 60's music (Elvis is IN the building). We just got an update that her donor heart has arrived and they are starting to put Shelby on heart by-pass in preparation to take out her old heart.
Shelby's nurse just came in again. She's doing well. Her old heart has been removed and her new heart is being stitched in.... I imagine her monitors beeping, the team working around her, the ecmo machine humming. I don't think I could be a heart surgeon. I have a hard time sewing in buttons... zippers... collars with points...
July 6, 2009 4:00 PM
Her new heart is in and started beating on its own. She is already off by-pass. To prevent any irregular heartbeats her heart will be temporarily paced with a pace maker. Shelby is doing really, really well from all accounts. Yay!!!!!! Right now, they are working to get her bleeding under control. Once that is stabilized they'll be able to close her up. When they finally bring her back to her room, Brad and I will have to step out for about an hour while they clean her up, draw blood for labs, take some x-rays, etc., etc. The surgical nurse that has been updating us thinks that her new heart is slightly larger than her old one. Again, we are thinking about the donor family - so very, very thankful.
Brad had been slowly walking a groove in the floor, but is finally sitting down sipping a soda. I know my stomach has been queesy, but then we haven't really eaten today. I can't believe my watch... can it really be 4pm?!!! With her new heart came all new coronaries. No more post transplant coronary artery disease! All her prior stents are gone. What an amazing blessing. It's like she gets to start over, almost.
We've been warned about 2nd transplants and how they have more issues than 1st heart transplants. I guess we'll just have to jump off that bridge when we come to it. I'm hoping that she'll have a long, long while of normal.. just totally routine post transplant care, with boring and uneventful health concerns.
Brad had been slowly walking a groove in the floor, but is finally sitting down sipping a soda. I know my stomach has been queesy, but then we haven't really eaten today. I can't believe my watch... can it really be 4pm?!!! With her new heart came all new coronaries. No more post transplant coronary artery disease! All her prior stents are gone. What an amazing blessing. It's like she gets to start over, almost.
We've been warned about 2nd transplants and how they have more issues than 1st heart transplants. I guess we'll just have to jump off that bridge when we come to it. I'm hoping that she'll have a long, long while of normal.. just totally routine post transplant care, with boring and uneventful health concerns.
I know we wanted to be at UCLA, but this new children's hospital here in Denver has been slowly winning us over. Maybe this was meant to be.
July 7, 2009 2:09 PM
Last night Shelby’s vital signs were up and down and up and down while her heart adjusted to its new surroundings. First it had the difficult task of waking up from a cold and silent slumber, and then it had to adjust to the changed demands from a completely different host. But little by little this new heart began to find its rhythm again in our Shelby. Whoever you are dear donor, your heart is taking on a whole new adventure. Thank you.
As the result of a prior transplant surgery and resulting scar tissue, Shelby’s wounds bled more profusely, so she required quite a lot of blood products to get her through the night. But she continued to hang in there. One side of her chest has slowed down a lot in terms of the bleeding. The other side is still quite oozy.
Her induction immunosuppressant therapy began immediately after surgery. At first, they let her body see the new heart, just to get an imprint. Then they load her up with meds that suppress her body’s natural response to attack foreign invaders. It basically knocks the memory out of Shelby’s immune system so that when it sees her new heart again, it takes the attitude, of “oh, you again, we know you… move on”. I think of her T cells as starship storm troopers – good fighters, but can be influenced by the Jedi mind trick. Hopefully, this Jedi medical trick works its magic.
This morning, Shelby remained pretty sleepy, but little by little she started waking up. With multiple tubes down her throat, she wasn’t able to speak, but she clearly wanted to say something. In an effort to communicate, her nurse offered to give her a pen to write on the back of a gauze sponge wrapper, but looking at her weakened condition wasn’t expecting much. Clear as a bell she wrote out, “can I haa chasstik”. She can have all the lip balm she wants!!!!!
Things happened pretty quickly after that. They decided to take her off the respirator. Just before they were ready to take her tubes out, she put up three fingers signaling to us to count to three before yanking them out. After it was all over with, in halting whispered words, her first request was for something to drink. But even with the anti-nausea meds, her tummy is bothering her big time. I don’t think a method has been invented yet that eradicates the ensuing vomiting from being put under general anesthesia. So, we started off with a few swishes of a mouth sponge, then ice chips, and now finally tiny sips of water.
The biggest response we got from Shelby was just prior to rinsing her mouth out with a liquid drug called Nystatin. It’s a preventative measure to keep her from getting mouth sores considering her suppressed immune system. She emphatically declined the yucky tasting med, but unfortunately it wasn’t her choice to make. But the promise of some Sprite later coaxed her into opening her mouth. Her nurse liked seeing some fiesty reaction from her. It shows she's a fighter.
Brad has been dubbed the "cutest" dad by the nurses here because he's so attentive to Shelby. But he has always been a very involved, supportive daddy throughout her life.
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That's all of the Transplant Chronicles for now. I think I'll do more of these types of posts again. Not just because it feels like a blast from the past but I find it interesting to go beyond my memory. Part 2 of the Transplant Chronicles will consist of a more healthy Shelby. I don't know, let me know what you think? Too much reading? Worth it?