Finally, they take me seriously!

For the last year or so, Jack's lips have been turning blue when he's cold and/or cold & active. Not just around the lips, but his entire lips would turn blue or purple. I brought this up several times to his primary physician (& the cardiologist from 2012), and he mostly brushed it off. The last time I brought it up, he finally wrote a scrip for a finger pulse ox. Well, I decided to just get one online for $30. :)

We went on vacation to Florida, and that's where it was really visible. Jack would play in the pool, and his lips would turn purple. One time when I put the oximeter on his finger, it calibrated and was down to 88%. I freaked (in my extremely calm way), and ordered him to get in the hot tub until he warmed up. I contacted his primary with the information, then my phone died and I had to wait for a new one to come in. Long story short, we got an echocardiogram & EKG set up for right after Jack & his brother got home from vacation in California, in August.

The echo & EKG went well; everything was normal. The cardiologist (who I later found out is the head of cardiology at Dayton Children's) talked to us for a while about what COULD be wrong. I insisted a stress test be done, so we set that up.

THAT was interesting! Jack did really well, and ran for the full 10 minutes. One thing both the doctor & I noticed was that the more Jack exerted himself, the lower his blood pressure went. However, during recovery time, his blood pressure went up.

The cardiologist talked to me afterward; Jack has Autonomic Response Dysfunction. Basically, his brain's signals to his body are backward. Or weird. When Jack gets cold, his lips turn blue (most peoples lips don't turn blue when they're slightly chilly; I'm not talking FREEZING here). When Jack exercises, his BP goes down (the opposite of the majority of people!). Sometimes when it's warm, Jack will be cold. Sometimes when it's cold, Jack will be warm.

*shrug* It's something that's not terribly serious right now, but could become a problem as he gets older. So the cardiologist said he'll see us again in 2 years. :)

Just when you think it's over......lol

Good News

I forgot to update, but Jack had his cardiology follow-up a few weeks ago. The doctor listened to his heart and various pulse rates, and declared him healthy. Just to be certain, we went back later in the day for an echo. That came back clear and fine.

He's healthy as a clam and his heart is working properly, and there's absolutely nothing wrong with him. :) We are very happy and relieved.

The doctor also said Jack doesn't need to be seen for at least five years. Yay!

Central Cyanosis

So, it's been happening at least once a day. This weekend was the first time my friend got to actually see Jack's lip start to turn blue, turn purple, & go back to normal. It seems to happen the most when he's active; and I'm not talking super active. He was just bouncing around in his chair at breakfast Sunday morning when his lip started to change color. It was odd & a little weird. His hands get really cold too.

Like I've said, I don't know why this is happening again. I just keep track of it. :)

In the meantime, we're battling strep throat & a stomach flu.. fun times. Jack is the only one who's not sick, and I'm only mildly sick at that. I'm trying to quarantine us. Ha ha.

Here we go (again?)

I honestly don't know what to make of things.. Monday, Tuesday, & Wednesday of this week, Jack has had prolonged central cyanotic episodes. I even took him to the ER on Monday, just to get him checked out. We don't have a regular cardiologist out here yet, as I'm still waiting on medicaid. All his tests came back fine, but they did an EKG and x-rays.. I want an echo done, but obviously can't afford it right now.

I'm worried. I talked to my sister, whose daughter has a leaky valve (amongst other things), and she suggested that Jack might be a bit leaky too because her daughter gets the same way.

I've been recording the episodes in a notebook, and so far there's no rhyme or reason to it.

I just want him to be okay. I really don't want to go through all this again..

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.

Dr Trento & Surgery

Just before the Thanksgiving holiday, we met Dr Trento. We both really like him, and know that Jack's going to be in good hands. About a week later, we received all the information for Jack's surgery. The 2 other surgeons who Dr Wong talked to about Jack's case will also be in the operating room. We're feeling very blessed right now. Dr Wong will also be there, in addition to 3 more surgeons.

Jack's blood type is O-negative, so he will need either O-negative or AB-negative blood. If anyone would like to give, or knows someone who can, you can go to the red cross after Christmas, and give a Directed Donation to him. I'll only give his information via email, so if you can do it, contact me.

His surgery is slated for January 17, 2008. We have to do xrays and bloodwork on January 7th and the 14th. We're going to be very busy.

We are so grateful everything's gone so well, after all the insurance mix-ups and haranguing. I'm just glad everything is going so smoothly now, and we're on the right track. :)

YES!

C called the medical group yesterday, and received the confirmation number for Dr Trento (surgeon).

YES!

He also scheduled a consult appointment for Nov 14th. We don't have to do anything or worry about anything until then. I am so relieved and happy and just... ah. :)

When Dr Wong (cardiologist) sent over Jack's medical records, he also sent a referral request marked "urgent". I think the medical group got the point that Jack's case isn't something they could dick around with.

*does happy dance*

Commence Banging of Head Against Wall

Yesterday, we received a letter in the mail stating that our medical group has deemed Jack's case as NON-URGENT, and was giving his doctors 45 days to send in Jack's medical records. "If the requested information is received within 45 calendar days a decision will be made within 5 business days of receipt of the information."

Um... what??? Non-urgent??? Even Dr Wong said he wouldn't want to wait more than 6 months from the time Jack had his (failed) cath until he could have OHS. Ugh.

So, I had C call Dr Wong and ask if they could send Jack's info over to the medical group. They were surprised because they thought everything had gone through and that we'd already consulted with the surgeon! Dr Wong said he would even send his own referral request along with the information... C said he sounded very worried that this whole process was taking so long.

Then, C called Jack's old pediatrician and asked them to send his file over as well. It'll get done sometime next week. So, hopefully we'll hear something in the next 2 weeks (????).

We're both so worn out and fed up with the insurance BS. It's driving everyone involved CRAZY. Why is it so f*ing difficult to see a surgeon?! Why does everything have to be such a pain?


I started crying after I read the letter. 45 days! I'm so glad C made the phone calls and got everyone going on this. There are some days when I just don't want to deal with it, and today was one of those days. *sigh*

And So We Wait...

I called Jack's pediatrician yesterday to see what was taking so long. We had gotten paperwork to see Dr Wong in the mail last week, but we didn't need it. We're waiting for the paperwork for Dr Trento.

It sounded like there was a mix-up somewhere in the lines of communication. They were under the impression that Dr Wong was the surgeon, and I guess that's how it got presented to the medical group; which is why the referral to Dr Trento was "shut down". I explained that, no, Dr Wong was a cardiologist. They asked if I'd seen him yet. I told them that we've been going to him for a year and a half now. We just needed the authorization for Dr Trento--the s-u-r-g-e-o-n.

They cleared everything up and resubmitted the referral for Dr Trento. So, we wait. Again. :)

The Saga Continues

Today we saw Jack's new pediatrician. She has an office out in Beverly Hills, right near CS Hospital. Jack's doctor is Amy Weimer; she's a young gal--looks fresh out of med school--but a REALLY good doctor. She was efficient, but not rushed. We gave her Jack's brief medical history. We dropped the names of Dr Wong, Dr Ferry, and Dr Trento, and it was so nice to hear that she knows these guys, so we didn't have to explain who they are, etc.

She typed everything into her computer (the way it should be), which I think is very efficient because instead of looking back through charts (which, in my experience, most doctors don't do), she can just click and pull up his complete history. :)

Anyway, she put in the referrals for Dr Wong and Dr Trento right in the computer. She told us that, on the way out, we could pick up the authorization number for Dr Wong (instead of the week-long wait it normally is). The gal at the front desk said to call back later or tomorrow, and she'd give us the authorization number for Dr Trento.

Just like that. No waiting, no guessing. THIS is the way medical groups should be run; NOT the run around we always got before.

So, tomorrow we'll call and get the auth # for Dr Trento, schedule a consult with him, and then schedule surgery.


So far, in my experience, it pays to wait for the best. We're incredibly happy, and C and I just gave sighs of relief when we left. :)

That's all. No drama. Yay!



P.S. I'll let you know how the visit with Dr Trento goes, and when surgery is.

Everything's Okay...

I talked to Dr Wong yesterday, and he didn't seem overly concerned about Jack's lack of eating, as long as he's getting nutrients somehow.

However, he was worried about Jack's lack of energy, and how it's steadily decreasing. The only thing we can do, though, is wait until Jack's appointment with his new pediatrician, and wait for the referral process to go through. Dr Wong said he's going to push for surgery SOON. He sounded like he was taking my worries seriously, and he sounded a bit worried himself.

I like being taken seriously by doctors. I feel like half the time I'm not...

I Just Don't Know...

Jack hasn't been eating a whole lot lately. At most, he'll have one meal. I keep giving him vitamins, every day, so I think that helps. However, the lack of food is affecting his energy level... which was already down as a result of the hole/shunting.

I'm worried about him. He drinks liquids just fine, so I'm thinking maybe I should buy those carnation breakfast mixes. At least he'd be getting something.

No one, except Cameron (and our friends), is taking me seriously. I've heard a variety of things, some of which pointed to ME as being a "bad parent" (not quite worded that way, but I read between the lines). I put food in front of him. I offer him food. I even put it in front of his face. All to no avail. No one else sees him on a daily basis, like I do. The only time they see him is in the evening, after he's eaten dinner, when he's the most hyper (because he's actually eaten something!).

I called the doctor, but I don't know what he can do, as he's not technically Jack's doctor anymore. I don't know what anyone can do, except to push push push for surgery. Soon.

Ugh.

New Developments

In order to get the ball rolling again on Jack's surgery, we had to:

Switch Jack to the Cedars-Sinai medical group. In a month, he'll see his new pediatrician. She'll hopefully refer Jack to Dr Ferry (the doctor who tried the catheter surgery). Then, Dr Ferry will refer us to Dr Trento--the surgeon who will do the open-heart surgery.

What a run-around. Hopefully this all works out, and Jack gets everything done before Christmas!

More insurance politics

We found out from the doctors' office today that our medical group has rejected authorization for Jack to have his open-heart surgery by Dr Trento at Cedars-Sinai Hospital. They would rather it be done at Children's Hospital or UCLA.

Here we go again. Dr Trento and Dr Wong are considering writing a joint letter to the medical group to get authorization for the surgery.

So, we wait.