for joseph's heart: November 2009

Monday, November 9, 2009

It's ABOUT Time!!

Ya, it's definitely about time. About time I posted again and all about time as to why I haven't. Brad and I joke about how before Lainey's birth it seems we had time to keep up with most of our goings on. Now, I'm just lucky to be dressed by noon. Blogging has taken a major back seat.

So, let's see if I can sum up the main highlights of the past few months...

August: the kids went back to school- Yippeeee!! Not that I don't love my kids at home, but 2 1/2 months of hearing "Tyler, stop it!!" starts wearing on my nerves.

Joseph moped around all day when the kids went back to school. His school didn't start till after Labor Day and he just couldn't understand why the other three kids got to go and he didn't. He carried his new gymboree monster lunch box around the whole day and kept saying "school? school?"

September: We had season passes to Disneyland so we went one more time in the middle of September for Joseph- it's his favorite place, mine too.

After returning from Disneyland, Joseph was finally able to start school. He was so excited. I was worried that he might be upset to have me leave him, but it didn't bother him a bit. He attends a special pre-school for developmentally challenged children. Each week, along with the normal pre-school activities, he'll receive speech therapy, physical therapy, and occupational therapy. In just the last month and a half, we have already seen improvement.

One downer to our September Month was on the 23rd. At around 9:45pm, Joseph had a seizure for the first time since his surgery in May. It was quite a doosy. One of those moments that the thought crossed my mind "is this it? Is the Lord going to take him from me?"

It came on slowly and almost in an undetectable fashion, very different from his past seizures. Once we realized he was definitely having a seizure, his sats started to plumit. Brad called 911 and ran to grab our oxygen tank while I prodded Joseph to breathe. By the time I finally got the oxygen mask on him, which was only about a minute but seemed like forever, his sats were below 39- I stopped looking at the monitor when I saw 39 and just focused on getting the mask secure. The paramedics transported him to our nearby ER where they had to intubate him. His seizure was persistent and the only way to stop it was to give a very strong anti-seizure medication. Unfortunately, a side-effect to that medication is respiratory failure. Thus, the reason to intubate. Once he was stable in the ER, Primary Children's LifeFlight team came and picked him up and flew him to PCMC. We spent that night and the next day in the PICU. By the next afternoon, though, Joseph was back to normal- side tracking the nurses and trying to escape down the hall to the exit. We were back home within 24 hrs- I think our shortest stay in the PICU to date.

October: I think the most dreaded month for me out of the whole year. Everyday, all I hear is "what I'm going to be for Halloween ....". My kids change their minds daily as to what they're going to be. Joseph was old enough this year to know what it was all about and he showed me at least 3-4 times a day on the Calendar when Halloween Day was. Thank goodness Lainey is too young to know or care. Other than on Halloween when she thought I was torchering her by making her wear the very warm costume I had purchased. Usually Halloween is cold and nippy but this year it was quite warm. The poor little thing was sweating to death in minutes- she spent most of the night, not wearing her costume.

So, the final outcome: Sam was Wonder Woman, Tyler- some green haired hit man(not pictured because I couldn't find him to do so- he got dressed and left before I had a chance to take a picture and by the time I picked him up to come home, I was too tired to care about another picture- sorry Ty, your 2009 Halloween is undocumented), William was Darth Mall, Joseph-Super Mario, and Lainey, a darling pink butterfly.

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.