I’m so bummed I missed an Easter update….Easter is not only the most profound of holidays as a Christian, as we remember Christ’s death and resurrection…how He gave Himself up for all us all….taking the brutal punishment for our sins. It also serves as a humble reminder for us, that the Gospel is something to be cherished everyday..
The truth is…the last few years, Easter really has snuck up on us. It seems each year since Poppy was born, we’ve been distracted by her being sick in some way. I would love to be able to say (as the recovering perfectionist that I am), that we have special Easter traditions we do each year and thoroughly enjoy this special day together with family and friends-church and a relaxing day of Easter egg dying and egg hunting- a beautifully delicious meal to celebrate Jesus and all He has done…I would love for our family to be able to ‘count’ on Easter as being all of this, lovingly planned and organized by mom… but what I’m continuing to learn, is that sometimes life’s circumstances just don’t allow, and you have to just roll with it….each year I find myself again newly humbled…I mean, as Christians we should be remembering and celebrating Christ’s sacrifice every day, why the let down when my expectations fall short?
When you get home from the emergency room on Easter, and just throw in a frozen lasagna, put on Hannah Barbara Easter movie and call it good…exhausted…and blessed to be home and together…another Easter haphazardly thrown together…convicted for feeling disappointed in myself for ‘failing’ the celebration once again, knowing that the Gospel is something to celebrate every single day…humbled because our family doesn’t get to just ‘plan’ on things happening we once took so much for granted…and blessed, realizing we have so much to be thankful for…knowing other families who are living a similar and much more sobering reality…
Poppy had fevered all day Saturday. Easter Sunday, she woke up with red spots ALL OVER her body…we were alarmed. We packed a bag for a hospital stay, sent Crosby to grandma and grandpas, and headed in to the emergency room. A few weeks prior, Poppy had been exposed to the chicken pox. Chicken pox for her is not the same as it is for everyone else…it can be very bad…
We got to the emergency room, and within and hour, the doctors were confident that she DID NOT have chicken pox!! Praise the Lord!!! It was deduced at that time that even though she had no spots on her hands and feet, that she probably had hand foot mouth disease, as it had also been going around. We salvaged the day the best we could, as I explained.
Her poor little hand got the worst of it 😞
Each day she woke up with more and more spots all over her body… moaning in the night with this painful rash. The girl has such a high pain tolerance, that for her to be moaning in pain with Tylenol and Benadryl on board meant it had to be beyond painful..it was heart breaking. 😦 Needless to say, we spent the week in and out of doctor appointments and the lab.
Each month Poppy gets her labs drawn. A test that is always drawn is her immune suppression (cyclosporine) drug level. The transplant team sets a target range of what this level should be to not only keep her body from rejecting her heart, but also not so much that her other organs such as kidneys and liver are not damaged by the toxic drug. Poppy’s target range is 125-175. Any result that lands in that range is ideal and the ‘goal.’ She has been on the same dose for the past 6 months- her level typically very stable. This level is also the reason why her meds have to be given on time, every time. If it’s too low, her body could start rejecting her heart, if it’s too high, it can be toxic to other vital organs.
Her cyclosporine level came back at 427!!! How does this happen, when you’re beyond meticulous/ borderline crazy about her meds?!!! Well…apparently it can just happen, and that is why it is checked so frequently. No wonder she was in so much pain and this common childhood virus completely overtook her poor little body!! More labs were ordered to check her liver and kidneys for damage. We were so nervous..praying no damage had been done, and miraculously, her labs came out just fine. Praise the Lord!!! It took a week or so for her levels to come down, and once her level was finally back into target range, she seemed to fight the virus well. She’s a trooper…it was a long exhausting few weeks, but by the grace of God we made it….she healed up just in time for her annual cath and biopsy.
While in Seattle, we were honored to be a part of the family panel for the annual Duncan Seminar Seattle Children’s puts on. This year discussed Congenital Heart Defects and how it impacts child development. Such a cool topic, as it is so complex and not as known or understood by the majority of people! We got to see friends and providers we haven’t seen in years- it was an honor and a privilege to share our experience with development, as well as sit alongside 3 other families who offered their own experiences- we could have shared for hours…😉
We had beatiful weather the entire trip. It’s always nerve racking handing her off for a procedure. Anything can happen. Even though we happen to be quite familiar with the amazing doctors and nurses who take such good care of her, it never gets easy.
Could this be the day her conornaries start to show signs of disease? Rejection? How will access for the cath go? She has lots of narrowing in her veins and the vp shunt tubing as extra hurdles for the cath Doctor to work around…anything can happen even with the very best providers on the case…
Since Poppy is approaching 3 years post transplant, her procedure looked slightly different this year. Usually, they go up through the groin and check the pressures, coronary arteries, and take a few biopsies. This year, they went through her neck and just checked pressures and collect biopsies. She also had a dobutamine stress echo. So while she’s asleep in the cath lab, they push a drug called dobutamine to get her heart rate higher and higher, all the while doing an echo to see how her heart performs when it’s stressed out. Can I just say I am SO glad I did not have to watch this!! Over the course of Poppy’s life, the girl has put me through too much craziness on the monitors for me to even want to imagine this…so thankful it is done in the cath lab!!! Lol!
Both the cath Doctor as well as Transplant had nothing but good news for us!! Hallelujah!! Preliminary biopsy results are also looking beautiful!! So far no signs of rejection!!! Thank you Jesus!!
Along with these annul biopsies, they also do a whole in depth set of labs to check things that paint a detailed picture of how everything is going. One of the tests is for CMV. Poppy’s CMV results have always been negative, this time it came back positive. CMV is kind of hard to explain, but basically most of the population has been exposed and are carriers of it..it’s really not an ‘if’ you become exposed but ‘when.’ Most of us don’t even know we have it. For the transplant population, it has the potential to be bad. (If you’re curious, Google ‘CMV in heart transplant patients.’)Depending on the ‘viral load,’ they either choose to treat it with IV antiviral initially and continue with an oral antiviral regimine, or not. Deciding to treat it depends on a lot of things, as the antiviral medication is also hard on the kidneys. Kind of confusing…I’m still trying to wrap my head around it-God bless the transplant nurses who are constantly having to explain it to me! 😉
The current status is that her viral load is negative- so no treatment at this time. We will keep checking this with each lab draw. It’s obvious that she’s not feeling 100% since being back home. We are expecting a call sometime soon to hear final biopsy results as well as what Infectious Disease recommends as far as the CMV goes. We are praying for good results and that she’ll fight this without any issues.
And all of that seems so small compared to what those close to us are going through…people around us are hurting….out of treatment options- dying…people awaiting the gift of life…grieving tremendous unimaginable loss…tragedies do not discriminate- they can happen to anyone at anytime.😞 Please keep those who are hurting in your prayers…only the Lord can provide His perfect comfort and peace. 🙏🏻❤️