It's been a while...

It's been a few years since I've written in here, mainly because I have been enjoying life. Jack is doing fabulously. We have had no stress in that area of our lives.

After I finished this blog, I thought to myself, Well, thank goodness all that is over! But it's simply not true. It's not over; yes, it's over for our family, but many many others are dealing with their own CHD children & babies, & even adults. I've decided that if I'm going to become an advocate for anything, it should be for CHD Awareness.

We were lucky enough to have doctors who ACTED. Doctors who truly cared about Jack's welfare & wanted to see him healed as much as we did. Some families don't have that. And some families just want to know they're not alone in their battles. And we, the CHD community, want to see more tests performed at birth. We want MORE awareness for this disease! There are so so many heartbreaking stories out there of babies who have died, but wouldn't have died if they'd only been given this or that SIMPLE test at birth. We want more research done on CHDs. We want more options other than open heart surgery. Too many people don't know that their child could possibly have a congenital heart defect, and too many don't know where to turn when they find out about it.

I created this blog so that hopefully someone, somewhere, would find it & would find comfort in knowing that someone has gone through something similar. But I'm finding that's not enough. I want to spread CHD Awareness to every facet of my life. I want it to reach out and touch everyone I meet. I will be an advocate for families, for doctors, for researchers. I will be a shoulder, an ear. I want to be to the CHD community what so many families were to MY own family, during our difficult journey.

This is my promise. :)

Perfect

Jack saw Dr Wong today. He had an Echo and an EKG. Dr Wong said everything looks perfect--Jack's heart looks great, the patch looks great (and is doing its job), there's no more shunting...

He said we go back in 3 months and, after that, not for a year or two.

We are all SO relieved! He's a normal little boy now!

Oh, and if he gets any dental work, he'll only need antibiotics until July 17, 2008... not for the rest of his life, like we originally thought.


Thank you, thank you to: Dr Trento (surgeon), Dr Wong (cardiologist), Dr Ferry (cath lab surgeon + cardiologist), Dr Cheng (surgeon), Ann (surgical nurse practitioner), and the ICU team at Cedars Sinai. This would not have been possible without them and their expertise.


Yay!! :D

Jack's Surgery and Aftermath

I've been seriously putting this off, and I'm so sorry.

January 17: We took Jack in for his surgery at Cedars-Sinai Medical Center. From past experience (watching other people go through similar things), we expected the surgery to last at least five hours. It didn't. He was on and off bypass in an hour, and the surgery itself took about two hours. The thing that took the longest was getting him prepped, and taking him off the respirator.

Seeing him in the PICU was a bit of a shock. We were slightly prepared beforehand, but it's very different when it's your own baby. After washing my hands, I ran to his side and nearly cried. C nearly passed out. Jack was hooked up to various IVs, had an oxygen mask on (his breathing was torturous, at best), and had a chest tube in (you could see the blood/fluids being drained from his chest). *shudder* He's a strong little man, though.

He spent one night in the PICU (his nurse that first day totally reminded me of my sister B--same smile, same sweetness, same calming attitude... it was very nice), and two nights in the pediatrics floor. We were sent home Sunday afternoon.

The doctor had told us that he wanted Jack up and walking the day after surgery; we didn't believe it was possible. Sure enough, he walked around a little bit. Two days post-surgery, he was walking, running, trotting--basically, he ruled the halls of the pediatrics floor; he acted like he owned the place.

The incision itself is a work of beauty. It looks like Jack just got a giant cut on his chest... it doesn't look like he just had open heart surgery. He's healing very fast, and is doing so well. He's still on a Motrin regimen, simply because it's still very painful for him. He also had Tylenol with Codeine "as needed for pain", which we've had to use a few times.

What a trooper!

A couple pictures...
Two days post-surgery:


Almost one week post-surgery:
















A lot of thanks are in order for: Dr Trento and his team of surgeons and doctors (including Ann, the cardiac nurse practitioner), Dr Wong, Dr Ferry, the Doctors and Nurses on the Pediatrics floor, the Nurses in the PICU (including Dr Amer in the PICU). Also: my family (brothers, sisters, parents, aunts, uncles, cousins, nieces & nephews, inlaws, etc) and my small, but tight, groups of various friends. Also also: C's coworkers & bosses, the vendors C calls daily (for their continued thoughts and prayers), and C's customers. Also x3: B&E Sales for the teddy bear that Jack says is "MINE!!!" and won't let his brother near. :)

Everyone has been incredibly supportive during this time, and has shown so much love and kindness and understanding. We really are blessed to have such a large group of friends and family, who have been praying for us and thinking about us--well, mostly Jack--during this whole ordeal.

Long story short: THANK YOU EVERYONE! WE LOVE YOU TOO! :D

more pre-op

This morning, we--C, Jack, and I--drove out to Cedars. It took us almost 2 hours to drive 30 miles. TWO HOURS. We decided, while sitting in horrible SoCal traffic, that we're going to call the hotel and see if we can get our stay extended, from Wednesday night on. Because, well, we don't want to wake up at 3am Thursday morning just to get our butts out to Cedars by 5:30am that morning. (We booked a hotel that's a little over a mile from Cedars-Sinai for the weekend, so we'll be using that as our "home base".)

Anyway... We parked, got the xray films, and took them over to the surgeon's office. We didn't have to wait long before the nurse saw us and took a general history of Jack, weighed and measured him, etc. Then we were sent over to the South Tower for blood stuff. We had to wait to be called to be registered for the bloodwork. Then wait some more for the paperwork. Then we went to the lab where it took all of 5 minutes for them to draw one vial of blood from Jack. They were sooo good there. And it helped that the nurse from the surgeon's office put a cream in the crook of Jack's arm that numbs it--he only cried while his blood was being drawn because he was watching them stick the needle in. Silly child. :p

And then we were done. We got home just after 12pm (we left this morning at about 7:45am). I dropped off C, and went to pick up Arlo from school.

My next update will be from the hospital, on Thursday.

EKG and XRays

This morning, we took Jack out to his doctor to get an EKG. It was relatively simple, and we got a copy of it. It seems similar to the others he's had (we have a full copy of his medical record), so nothing has changed.

We had an appointment to get some chest x-rays at 1:30pm, but we were done at the doctor's at about 10:30am, so we just made our way over to the imaging center. We got lost. Beverly Hills is confusing! Ugh. Finally, after getting turned around, I got us going in the right direction, and we made it all right. We got in there and were a couple hours early, but since we had that later appointment, we got put in almost right away. We barely had to wait at all.

I got to stay with him, and he was really good, but a little squirmy. The technician checked that the x-rays were okay, and then it was time to go. All of that--the EKG and x-rays--took about 2 hours. Not too bad. We headed home straight-away, and picked up Arlo from our friend's house; it was his first day back at school, so she took him and picked him up. (This school year, I took extra precautions because I knew we'd be going through all this, so I put our friends and extra family members on the "pick up" list for Arlo's school.)

We came home and all crashed. It was very tiring. We have to go back next monday and do more tests, paperwork, etc.

our schedule

January 7: we'll go to Jack's doctor and get an EKG, and then we'll head over to Cedars-Sinai and get his chest x-rays done.

January 14: we go back to Cedars-Sinai for blood work, make sure they have the x-rays, and I think a few other tests. I can't remember all the details, but we have to be at certain offices at certain times... we'll pretty much be spending our day there, running around the hospital from place to place.

January 17: Jack's surgery. We have to be at the hospital at 5:30am. They have a Starbucks there, so I'll purchase a one-day pass from T-Mobile and send out periodic updates. Assuming all goes well (and we should always hope for the best), he'll spend one night in the ICU, and another 3-5 days in a regular hospital room. At least he'll get to play in the playroom this time around. :)

That's it. Of course I'll post updates after each significant date (7th, 14th), but that's the gist of it. We have only been able to find one person with O- blood--my brother in law--but he's all the way in Utah, and we really don't want to have to pay the transit costs for getting it out here, should he donate. So, I guess we'll be relying on the general public's donations; which is fine, but we would have rather been able to do direct donations.

Pray for us.

P.S. I know we have a ton of support as we're going through everything. As the surgery date approaches, I am more and more grateful for the large support groups (aka: cheerleading sections *grin*) we are fortunate to have. Thank you all, for your love, kind thoughts, good karma, well-wishes, and prayers.

One month to go...

Jack's surgery is next month. I haven't quite figured out how I feel about it. I'm scared, mostly. We have a lot to do in the two weeks leading up to it, and afterwards as well.

*sigh* I'll write more when I get my feelings all sorted out.