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.

And the ball starts rolling...

I just got a phone call from Dr Wong (Jack's cardiologist). He said the surgeon who would do Jack's surgery is Dr Trento.

We should get authorization for a consult by the end of the week, and hopefully have a consult scheduled in the next two weeks. It could be as soon as a month that Jack's surgery is scheduled.

Wow. I'm very impressed with Dr Trento's bio, too. I'll report again when we have our consult. :)

Jack's Follow-up

Jack had his follow-up doctor appointment today. His EKG is the same as before the surgery. They did an Echo as well, and the hole looks huge. There's a piece of the septum that was separating the 2 main holes that's now flapping around as the heart pumps. Both C and I thought it was a valve but the technician said it was the septum.

This time around, as we're becoming better informed, we asked more informative questions. I asked about the volume of shunting. Dr Wong explained that they use a ratio system to measure shunting. 1:1 is normal, meaning an equal amount of blood is being pumped through the lungs as it is the rest of the body. Jack's shunting ratio is 2:1, meaning that twice as much blood is going through his lungs as through his body. Dr Wong said that because Jack is symptomatic (he tires a lot quicker now than he used to) and the right side of his heart is still quite large, he'd like to have surgery done on Jack as soon as possible.

On Monday, he'll be at a medical conference, so he'll present Jack's case to any of the 3 heart surgeons that might be there (he said there's usually one who goes on vacation about this time), and see which guy will take the case. He'll give us a call Monday and let us know. Tomorrow, C's going to call and get a copy of the letter Dr Wong sends to Jack's pediatrician, so I'll know more specifics then.


Again, we wait. Hopefully we get this worked out soon.

Jack's story: Part 2 -- Dr Ferry

Our main thing that we keep telling ourselves and others is that at least they tried. They were "fiddling" with the membrane & different devices for over an hour, so we know they really tried their hardest. Dr Ferry, before taking Jack in, told C (my husband) that there was about an 80% chance that they would be successful, but he wouldn't try to fix things if it would cause more harm than good. When Dr Ferry came out that last time, he said that the 80% chance steadily went down and down the more they fiddled, and they may have made things a bit worse than they were in the beginning. So, instead of pushing the envelope and using the biggest plugs they had, he pretty much called it quits. And I'm very grateful for that--that he would put his patient's wellness and overall health before his own want for a successful catheterization.

We do have excellent doctors. Dr Ferry is the guy parents across the globe come to because other doctors where they live say there's nothing they can do for their child's heart. We read numerous stories of parents who were glad they went to Dr Ferry, and that he was the only doctor out of many who said, "Let's give it a try!" or "Oh, I can do that." He's such a nice guy and he really cares about all of his patients. So, understandably, we were both very comfortable having him as Jack's doctor, and we knew he'd try his hardest without trying to push things too far. He's a very genuine man. It seems like he's one of the few surgeons left who likes his job for what he does for people and not necessarily for the money.

Anyway, we aren't happy how things turned out, and it's very hard to get through the day without crying. But, we're hanging in there and just trying to get our minds on to the next step. We're keeping a closer eye on Jack, being as his hole is much larger. I don't know if a lot of his behavior is because he's still getting over the effects of anesthesia, or because of the surgery itself. But we're taking notes, and going to let his cardiologist know in a week how he's been doing.

Jack's story: Part 1 -- The Hospital

Yesterday, we got to Cedars-Sinai at about 8am. We waited in the waiting room. After a while, a nurse came out, doing her rounds (she would come out periodically and update the families on what was going on in surgery/cath lab), and told us they took a baby in ahead of us so it would be a couple more hours (this was a different baby than the open-heart one). We were supposed to go in at 10am. At 11am, she came out again, and said it would be at least another hour. We were kept company by the very large Italian/Mediterranean (not quite sure which) family whose 9-day old baby was having open-heart surgery. At 12am, they called us into the holding area.

They took Jack's vitals and did all the paperwork. The anesthesiologist came and we did a "practice run" with him holding Jack for a bit, then giving him back to me. He told me that he would be back in a few minutes to do it again, but we weren't allowed to let Jack feel anything was different (no goodbyes, no kisses....no dramatics, basically). Luckily, I hug and kiss Jack every day, so he didn't think it was weird that I spent the next few minutes doing that and singing to him. The anesthesiologist came back, and I handed Jack over. He told Jack that he would show him another baby in the area, and said Jack could play with his computer, too. It was very cute, and Jack didn't cry or fuss at all. Inside, though, I was all butterflies. :)

They led us out of the holding area, and told us it would be another couple of hours. We told the volunteer at the front desk that we were going to get some lunch. We spent an hour eating, making phone calls, and just trying to gather ourselves for the long wait. At 2pm, we went back to the waiting room. The nurse came out a couple more times and told us they were "fiddling" with the different devices, to see which would fit. Around 3pm, the nurse came out again and said Jack was stable and fine, and still asleep on the table. She told us that Dr Ferry would be out in a few minutes to talk to us.

Dr Ferry came out. He told us that when they put the TEE (transesophageal echocardiogram), they found that the membrane separating the upper right and left chambers was like swiss cheese. There were a bunch of tiny holes everywhere, not just the 2 they thought they were dealing with. They tried every device they had, but every time they would put a bigger patch in, another hole would tear, making the hole even bigger. That, and the membrane isn't strong enough to keep a patch in place. So, now he has one big hole that's about 22-24mm.

He said they'll have to do open-heart surgery, but not right away, though. We're to go for a follow-up appointment with his original cardiologist, Dr Wong, in a week, and then we'll probably get referred to a cardiac surgeon from there. He also mentioned that now there's quite a bit of blood shunting (passing) back and forth between the two chambers.

After Dr Ferry talked to us, we practically rushed to go outside and make all the necessary phone calls. I was very upset.

When we got back upstairs, we had to wait another hour before we could be taken back to the holding area to see Jack. He was awake, and not liking it, but I had to hold him and put pressure on his wound for an hour. Very difficult. We spent the night at the hospital, and they released us this morning, around 10am. The nurses all knew Jack, and his night nurse said he didn't even twitch or wake once during the night when she came in to check his vitals and his surgery site. We had to keep him lying flat until 8pm last night, which he didn't like, but after that he was much happier.


We're all doing pretty well. Jack's doing great--you can't even tell he had surgery. He's such a trooper. When I talked to my friend, briefly, yesterday, she said, "Well, God made Jack really strong for a reason." I couldn't agree more. He's the strongest 2-year old I've seen yet, and there's definitely a reason for it.

In the beginning...

At 9 months old, my youngest son Jack was diagnosed with a heart murmur. At 10 months old, he was diagnosed with ASD--Atrial Septal Defect. His was different in that there are 2 holes in the membrane separating the left and right upper chambers of his heart.

Thereafter, every 6 months, Jack had a cardiology appointment where they'd do an EKG and an echocardiogram. At one point, Jack's doctor said the holes were getting smaller. At his last appointment, he told us that because of the location of the holes, they likely hadn't gotten smaller--they're very difficult to measure anyway.

We went through a process that took about 2 months: we talked to Dr Ferry, who said he would try to perform catheterization on Jack and close his holes using a sort of mesh plug shaped like a dumbbell; we had to wait for authorization from our medical group for the catheterization to take place at Cedars-Sinai, as no other hospital in the Valley would do it; and, we finally had to wait for the weeks to turn into days until Jack went into surgery this past Wednesday.

I'll save that for another post.