Home Again and Waiting . . .

Eddie is back home and doing very well. His fever broke early Saturday morning and his potassium levels quickly came back in line. His cardiologists thought one of his meds (Enalapril) may have been a contributing factor to his potassium spike so they've discontinued it permanently. Woo-hoo! One more drug off the list bringing us to six total:

• Neoral (ciclosporine)
• Cellcept (mycophenolate mofetil)
• Sildenafil
• Magnesium (magonate)
• Bactrim (sulfamethoxazole and trimethoprim)
• Aspirin

We are still waiting for the biopsy results. After talking to the Heart Center yesterday, it may be Wednesday before we get clear line of sight. Fingers crossed.

Big thanks again to Eddie's team of cardiologists, surgeons, anesthesiologists, nurses, and coordinators for making a nerve-wracking process manageable. As you can see from the picture, everyone loves Eddie and, for a parent, it's so comforting to see your child taken into the OR in the anesthesiologist's arms rather than on a gurney. Thank you Seattle Childrens!

Postscript

Ok, so one last update before I drift off to sleep. Eddie's fever has broken and his potassium levels are now back to normal (thank you, Lasix). Those are the only things keeping him in the hospital, so the attending fellow just stopped by and asked if we wanted to go home now. Since it is 11:00p, Eddie is fast asleep, and I don't have a car, I figure we'll stay put and get a good night's rest at the hospital :-)

Unfortunately, since the tissue samples from today's biopsy weren't sent to Pathology early enough, we won't have those results until Monday afternoon. Luckily, we don't need to wait here until then since he isn't showing any clinical signs of rejection.

Otherwise, all of his labs look great with levels landing within appropriate ranges.

A bit surreal, but also wonderful, to be back in the hospital and seeing so many familiar faces. Also great to see all of the progress on the new wing . . . can't wait to see our friends in the Cardiac ICU in their new digs next Spring.

Post-Op Update

So Eddie came through surgery just fine. As expected, the surgeons had to feed the catheter through the groin since he doesn't have good neck access (Eddie, not the surgeon), but there were no subsequent complications.

However, during the course of the day, the doctors noted that Eddie's potassium levels were quite high which can be problematic for heart function...potential for irregular rhythms, etc. So as a precaution, he is being admitted and will stay at least overnight. We were hoping he would spend the night at home, but we had also kept alive the possibility of an overnight stay so not a complete shock.

Regarding the biopsy, the surgeons took seven tissue samples and early results could be available tonight. Will certainly provide updates as they're available.

Thanks for the many thoughts and prayers as we once again haunt the halls of Seattle Children's.

Once more unto the breach, dear friends...

This will be a challenge . . . writing again after such a long time. Long on words, short on pictures (although we will post many of those very soon). I think we planned, in the back of our mind, to give more regular updates . . . especially with so many of you far away and not having the advantage of seeing Eddie’s progress in person. However, life does have a way of getting ahead of us, and the past five months have been anything but easy.

 

Putting the most current news on the table, Eddie will be headed back to Seattle Children’s on Friday for an unexpected catheterization and biopsy (similar to the process he had in late Jan/early Feb when he was first diagnosed). This was unexpected for us, but not necessarily unwelcome. Eddie is showing no signs of rejection and he continues making amazing progress. In recent months, however, the Heart Center has been reviewing their cath/biopsy policies and they are now recommending that new transplant patients be biopsied within 6 months of transplant. Consistent echos are very helpful (and non-invasive), but the only way to get a clear picture of Eddie’s heart muscle is to look at it under a microscope . . . and that means a biopsy.

 

While we’re very nervous about going back to the operating room, we look forward to having clear assurances that Eddie’s amazing progress is not hiding any underlying rejection. Rejection can take several forms, often unnoticeable from the outside, and we are happy to leave him in well-trained and providential hands. After the miracles we have seen over the past several months, we know that a power greater than our own sustains us . . . and we believe God has done and will continue to do great things with Eddie.

 

Goes without saying, we will share updates as they are available. A biopsy like this can be an outpatient procedure, assuming they can feed the catheter through the neck and into the right heart. However, since Eddie’s neck access was severely compromised while he was on ECMO, it is possible the surgeons will need to go in through the groin, which would possibly require an overnight stay. Either way, this is not an overly complicated process . . . I imagine many of us know someone that has had a cardiac biopsy . . . and we hope to be home and recovering very quickly.

 

On a related note, we continue to learn more and more about heart research . . . it certainly helps to live within driving distance of top-tier research facilities like UW Medical Center and Seattle Children’s Research Institute. One of the more exciting advances is the work being done with stem cells and heart regeneration . . . basically the idea of using stem cells to help the heart, one of the body’s least regenerative organs, to heal itself and render unnecessary many dangerous and complicated surgeries and transplants. Such a future is many years away, but there is amazing work underway in Seattle to figure out how to get there. We hope this work becomes even more personal in the months ahead since our new high school freshman has decided to do his Honors Science research project on heart regeneration and has been invited to meet with the co-directors of the Institute for Stem Cell and Regenerative Medicine to discuss potential research options. An amazing development and we are so proud to see him taking such a bold step forward.