for joseph's heart: Life on the 3rd Floor

Monday, May 25, 2009

Life on the 3rd Floor

Joseph was released from the ICU yesterday. He is doing well. One chest tube was removed yesterday - one down, two to go. He is still giving me the silent treatment. I don't blame him - I'd be mad too if one minute I was running around and the next I woke up in a hospital bed with my chest cut open, hooked up to all sorts of machines and a tube down my throat. I'm sure once his tubes are out and he can move more freely, his mood will improve. Our only minor concern right now is with his potassium and sodium levels. They're a little lower than they should be but we're trying all sorts of horrible tricks to try and raise them: like hiding salt pellets in food- poor little boy, he'll never trust his mom again when she offers him chocolate ice cream. Needless to say, it didn't work anyway. Instead of swallowing the salt pellets whole inside the ice cream, he started chomping on them, like they were almonds or something. Soon after, of course, those few bites of ice cream made their way out the same way they went in.

So... since I'm sitting around all day, I thought I would create a blog for Joseph. Sometimes... it's really nice to have nothing to do but sit in one spot for only one reason- it gives a lot a great time for thinking and doing some of the things we have been wanting to do for awhile. I hope you enjoy those moments too, hopefully they won't have to be done in a hospital.

Brad, Will, and Lainey came to visit today, along with Brad's brother Lance and his wife Jamee. Joseph still refused to break his code of silence and Lainey seems to be a bit mad at me as well, I just can't win. Luckily, she's only 3months old so as fast as she decides to be mad, she forgets. Plus, she's so good natured that I don't think she'll ever be much of a grudge holder.

If you know of any foods high in sodium and potassium, besides bananas and pretzels, let me know.

Good Night

here's a few photos from the day's past:

day 1: just a few hours after surgery

day 2: no ventilator

day 3: looking better

day 4: sitting in a chair but not happy about it

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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.