Tuesday, September 9, 2014

Summer's End

I know - it's been forever! I do not even know where to begin. Truly...no news is good news around here. We are on a pretty normal weekly routine and our summer weekends were spent out at our family cabin. Needless to say it was a fantastic summer. It is hard to believe September is here. This month sticks out to us like a sore thumb. Almost a year ago our lives changed forever. For some reason my anxiety level has heightened even more with the start of this month and flashbacks are present again...especially the beginning days of our journey. As much as I really do not like to dwell on the past, it definitely haunts me from time to time. I never want us to go back there. I fear it everyday.

BUT, then I bring myself to reality. Nolan is doing amazing. I mean, if he didn't have that NG tube in his nose, I seriously would never have guessed this little man has had a heart transplant. He is cruising...really ready to walk any time now, his eating is getting MUCH better and he is drinking water like a champ. He had a routine cardiology appointment at Hershey yesterday and Dr. Dispenza continues to be very happy with how everything looks. Our next appointment is on Monday with neurology at Hershey to discuss his past strokes and the keppra he is on (which is a preventative anti-seizure med). Hopefully we can begin to wean this drug off.

Gosh, so many other things have happened, I am really not sure how to catch up. I think it may take me a bit, but I do plan on providing a little update weekly. Currently Riley is doing tumbling and t-ball, and Nolan is busy at home with our awesome nurses, PT and OT quickly catching up on his milestones. We will be getting him in soon to get his flu shot and whatever other immunizations he is allowed to receive. Because of Nolan's immunosuppression due to the anti-rejection medication he is on, he is not allowed to receive live-virus vaccines, such as measles, mumps and rubella. This also means if Nolan were exposed to any of those viruses that he can not be vaccinated for, it puts him in a serious risk of major illness, even death. (Getting on my soap box...) Take time to learn more about the importance of vaccinations for your family, friends...and kids like Nolan! http://www2.aap.org/immunization/families/faq/whyimmunize.pdf

Anyway, Matt and I are doing well, also. We are both trying to get back into a workout routine, keep busy with work and even getting out with friends. We are very fortune to have such a supportive family that allows us to get out and have some US time! We are even planning a vacation ALONE in February! Yikes!

LAST, but not least...Nolan's Heart of Steel is teaming up with Ellie's Heart Foundation and Hayden's Heart to host a blood drive on Saturday, October 18 from 10 am - 2 pm. When planning this we thought we could all be in town, but unfortunately that is the weekend of Nolan's next biopsy! Anyway, I hope those locally can make it to the Genetti Hotel and contribute to this amazing cause. I can't even tell you how many blood transfusions Nolan received while at CHP, but I know that the American Red Cross is ALWAYS desperately needing blood donors. Click HERE to sign up to donate!

Well, I am off to bed. I will post some more pictures on Facebook this week!


Wednesday, July 23, 2014

What's The Latest

It got later than I anticipated, but here is the latest from our recent trip to Pittsburgh!

We got in Thursday night and stayed the weekend with our great friends, Rob and Alisa Zisman. Nolan had to be at same day surgery at 6 am, so it was an early wake up call for us Friday morning. Once he gets into the procedure, it is pretty quick. We actually spent most of the time speaking to one of our transplant doctors about Nolan's medications, genetic testing and what the next 6 months will look like. This was also Dr. Lal's (transplant doctor) last weekend at CHP, as he is heading west to Utah. It bums us out because we really clicked with him and we all have grown close; and I know he enjoyed watching Nolan progress so well. There are many doctors we really enjoy at CHP, but we will miss Dr. Lal.

Once Nolan got out from the biopsy we were called back to the recovery area. He was super groggy, but otherwise was doing well. We ended up leaving the hospital close to 1 pm and spent the rest of the day relaxing at Rob and Alisa's. They have a son, Enzo, around Nolan's age...so it was fun to see them playing with one another. On Saturday morning we got a call from Dr. Lal letting us know that Nolan's biopsy came back with zero rejection - which is the best we have ever had! We were so thrilled and relieved! The rest of the weekend we really just relaxed, went out to eat, went for a walk/picnic in Frick Park...it was exactly what we were looking to do. So, again - THANKS Rob and Alisa!

Monday morning we had an appointment with our gastroenterology at 8 am to discuss feedings and his liver enzymes. His liver count came back normal, which is great! But now the question is why his counts were elevated in the first place. Most important, Nolan needs to be on a prophylactic antibiotic to protect him from certain ailments, most notably a type of pneumonia that could be fatal. So, he will start back on Bactrim this week - and if his liver enzyme elevate, we'll now know it's the Bactrim. We also started him on Pedia-sure instead of formula. He is now down to 3 bolus feeds a day through his NG tube, as well as relying on oral feeds for his caloric intake. So, we are making progress!

ALL IN ALL - it was a great weekend. It was everything we wanted to hear...and MORE! It has been a busy week...actually, July has been pretty crazy! This weekend we are heading to a wedding in the Finger Lakes. I am actually looking forward to a get-away with Matt and taking some time to ourselves. BUT, I also miss our kids, so I am looking forward to our life slowing down a bit.

Thank you all for the continued support and prayers. We are beyond blessed on how well everything has gone thus far and hope things continue to move in the right direction!

Off to bed. GOOD NIGHT!