for joseph's heart

Friday, May 29, 2009

Well....? I didn't post anything last night because I was in hopes to have good news today and be able to post that instead of the same old stuff. But, unfortunately, Joseph had more chest tube output yesterday than even the day before. Mainly because all his IV diuretics were converted to oral and they're just not as strong so more fluid built up around his heart that had to be drained through the tube. The hardest part now is watching how miserable the tube makes Joseph. He has to get round the clock scheduled Lortab and sometimes a little morphine to deal.
I'm really praying that he can get it out tomorrow. Other than that, all is going pretty good. The doctors have asked that he gets up and walk at least three times a day, even despite the chest tube, so that he doesn't get too much build up in his lungs that may turn into pneumonia. The walking gets him coughing which clears out all the junk. Plus, his muscles and bowels really need the movement.
We have decided that Joseph has Chuck E Cheese OCD. He asks about every 15 min.(sometimes less) if we're going to Chuck E Cheeses- only he uses a special sign that he made up to mean Chuck E Cheese. My answer is always the same "we'll go to Cheese's when Joey's better". This satisfies him until he asks again 10min. later. I figure it must set his mind at ease to ask and be reassured that eventually he'll be out of the hospital and can do something fun.
It's a good thing all his longer hospital stays happened when he was a baby and didn't have any concept of time otherwise they may have needed to give us both morphine.
Say a prayer for us, they're always the best medicine.

1 comment:

UnknownMay 30, 2009 at 9:04 PM
Darc,

Thanks for the update, you are an amazing mother to hang in there through all of this - you are both amazing parents. We love you and hope and pray that all works out - it will. Look how far the little guy has come so far and so fast. Tell Joey that his aunt Jamee and uncle Lance love him,

Lance
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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.