for joseph's heart: June 2009

Monday, June 22, 2009

BACK TO CHAOS

AND THEN SOME!!!!

I have been trying to find the time to create another post on Joseph's blog for weeks now. It's been three weeks tomorrow since he was released from the hospital. I opened one of the billing statements today- now brace yourselves! - and mind the fact that this statement only includes the hospital (ie. room and board, use of equipment, medicine, etc.) It does not include any

professional charges(surgeon, anesthesiologist, nurses, cardiologists, pediatricians, ICU specialists, and so on and on and on...) The statement charges were over $88,000- YIKES!!

Though this is nothing in comparison to the overall figure. After Joseph's 2nd surgery, I stopped adding up the billing statement figures once I passed $1,000,000.00. By the time Joseph is grown, He will literally be the "Two Million Dollar Man".

So, here's an update... Joseph's X-ray looked good. No fluid around his heart and lungs. The professionals attribute that success to diuretics- and... it does deserve some credit- but, for me, I'd like to thank the Lord - he's the one that keeps our Joseph going. He's the one that blesses those that work on him to be so gifted. At any time, if it was his will, all could change. We know this, but we also know that we must have faith and ask for the Lord to bless his heart that it will continue forever. So... we ask for the greatest blessings possible knowing that the Lord will grant our petitions if it is the plan for Joseph and our family.

At Joseph's last cardiology visit, he was able to remove daytime oxygen. So, we went to Chuck-E-Cheese to celebrate. It was the highlight of Joseph's week- he talked about it for days.-you'd think we went to Disneyland or something- oh, the pleasures of a young heart.

Also, here's some pictures of us with my brother, Elder Jordan Wood. He returned home from his mission for a short time because of a back injury. Please pray for him. As soon as his back is in better sorts, he can go back to serving the Lord as an LDS missionary in Chihuahua, Mexico. These pics were taken at Carl's Jr. He had a layover in Salt Lake, before heading to St. George.

One more thing... I'd like to thank everyone who's shared their love and kindness with us. The meals, phone calls, notes, and occasional gifts have been so appreciated- truly. Thank you so much for thinking of us- we love you all.

Recently, Brad's sister's husband's grandmother- whom we have never met- sent some gifts for Joseph and our family. The bag of surprises came from Travis's grandmother, Marian Heinz, who lives in Ogden, and her sister, Jean, from England. First of all, the kids loved the presents, especially the SpongeBob Connect 4 game, it was Joseph's favorite. But mostly, I just think it's amazing that people we have never met are sending us gifts to let us know they are thinking of Joseph- it touches me so much. Thank you, Marian and Jean. for your kindness and love. And thank you to everyone- neighbors, ward members, and family who have been calling to check on us, bring us meals, and taking care of our other children. We could never manage through such an event without you. And... I know that the Lord will bless you because of your unselfish service.

I couldn't end without showing you a picture of the cutest baby ever!!!!!!!!!!!!!!!!!!!!!!!!!

Friday, June 5, 2009

Another X-ray

We made a return visit to PCMC today for more lab work and another chest x-ray. Joseph has some fluid around his heart. His surgeon wanted to give him an additional diuretic to see if that will do the trick before admitting him back into the hospital and putting another chest tube in.
We have another appointment on Tuesday to see if the diuretic works. Please pray for him on fast Sunday. We love you all - thanks

Tuesday, June 2, 2009

We Did It! We Did It! Ya,Ya, Ya- no eating here tonight, no eating here tonight

That's Joe's favorite ditty from Finding Nemo. I felt it was appropriate for today's post. On Monday morning, the cardiology team came in and said that all looked good on Joe's chest X-ray, but they wanted to watch him for one more day just to be safe. Joe had a hard time staying in bed on Monday and was more than ready to leave on Tuesday morning.

It is good to be home:) We feel so blessed.

Joseph's Heart History

The Lord has blessed us in countless ways. Joseph's amazing OB, Tracy Winward, discovered in a routine ultra sound that something wasn't right about Joseph's heart. An appointment at PCMC was made for me to receive an echo cardiogram for my unborn baby. It was at that appointment in October of 2004 that Joseph's defect was first diagnosed. We were told on many occasions that utero diagnosis was rare. Without an OB with such great skill, Joseph would have been born in St. George, UT and died a few hours after birth. Instead, he was born at the University of Utah in Salt Lake City, and then transported to PCMC- right next door.
After a couple of hard days in the NICU, Joseph received the Norwood(w/Sano modification) surgical procedure. He was in the hospital three more weeks and then was able to come home. After being home for two weeks, at a scheduled cardiology appointment, arrythmias were discovered and later diagnosed as multi-focal atrial arrhythmia. We returned to PCMC for another 10 days and then back home for a week and then back to PCMC for another 5 days. Joseph's arrythmias were thought to be under control so we were able to return home where we spent the next four weeks, the longest so far.
When Joseph was a little over 3 months old, on May 9th, 2005- the day after Mother's Day- Joseph's heart rate monitor alarmed at 6am. He was in tachycardia and since we lived in St. George, there was very little knowledge in the Pediatric Cardiology department and the medication he needed to calm his heart could only be administered by a cardiologist that specialized in the electrophysiology of the heart. That type of specialized cardiologist was only found at PCMC. A couple hours after arriving at Dixie Regional Medical Center, Joseph had a cardiac arrest. Dr. Marsden, our most beloved pediatrician was wise and careful, but most of all listened to the spirit and did all the right things to bring Joseph back.
We were later told that Norwood babies don't survive cardiac arrest. But Joseph did.
After being taken to PCMC by life flight, Joseph spent the next week in critical condition. I kept telling myself that if Joseph was meant to die, Heavenly Father would not have let him come back after the cardiac arrest. I clung to this faith every moment of each day. The next week got better and his surgeon was surprised, even shocked, that his heart function was so good- good enough even to move on to the next phase of surgery. On June 7th, Joseph received the bi-directional Glen surgical procedure and then later that month we finally went home.
Much has happened over the past three years: tachycardia again in Sept. '05 but no arrest; developmental delays on his left side presumably a result of the cardiac arrest or possibly a stroke soon after that; seizures that began in August '06- again a direct result of the cardiac arrest or stroke; and a life changing move to Layton, UT- then one back to St. George- and then back to Layton again where we live now and plan to stay.
Joseph's phase III- Fontan surgery - was planned for June, 2008, but after a cath revealed a very large vein that had grown from his PA- and so was thus coiled, Joseph's sats shot back up above the 80's, his surgery was postponed.
He did receive the Fontan on May 20th, 2009. An MRI, done a few weeks before surgery, revealed an enlarged Aorta(which is really his pulomonary artery), and a narrowed PA. During surgery, these two areas had to be reconstructed. Aside from a small complication with his Fontan, which was solved by splicing the conduit and extending it, the eight hour surgery went well, without any major problems. Joseph recovered somewhat slow the first two days out of surgery but once his ventilator was removed, he progressed nicely.
This is where I begin my regular blog posts.