for joseph's heart: Tomorrow, Tomorrow, Tomorrow

Saturday, May 30, 2009

Tomorrow, Tomorrow, Tomorrow

That seems to be the most common saying in Joseph's room these days: "maybe tomorrow"
He still didn't get the chest tube out today. I asked for an increase in his pain relief. Every 3hrs he gets either Motrin or Lortab. This has made his day much more comfortable, he was even able to get up and walk down the hall without crying out in pain. It's crazy.... they can't take out his chest tube but then they ask if I'm getting him up to move around- sure, no pain in that activity : big giant tube hanging, with no support, just a few stitches, out of a little skinny 4 year old chest. I didn't take any pictures of that, but I think I will, just to show how strong Joe is being. He really wanted to go outside today, so we did. Then, once outside, he wanted to go to the car. It wasn't the greatest reaction. I think everyone around us thought we were torchering our poor, sweet, sick child by exposing him to a trip outdoors. We were much more thoughtful about the places we decided to go on the next walk about. It seems the vending machine is a good destination, with a built-in reward. He can't get too upset when he's walking back to his room with CHeeTos in hand.
So.... like I said yesterday... maybe TOMORROW he'll get his chest tube out so we can go home.
I have to look on the positive side: at least it's not 6 weeks of Tomorrow's like it was after his cardiac arrest. I know reading a blog without photos is rather boring, so, sorry about that but I usually don't get to posting until rather late. But don't worry, I'll have some pictures to post TOMORROW.

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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.