Cath Results

Well, the day is over and I'm back at the RMH for a good night's sleep. Tom's staying with Harlie in the PACU (post-anesthesia care unit). Overall, we had a "great" day. I'm sure Harlie wouldn't agree. But, with everything we did today, we think it went very smoothly.

I was so impressed with the lab tech that drew Harlie's blood. She got in on the first stick and was able to get all the blood she needed! I couldn't believe it. At first, she (the lab tech) seemed pretty tired and bored. I'm sure it is no fun sticking kids all day. But she really perked up after I told her how impressed I was. I told her that it always takes several people with a lot of fighting and sticking and I was so very thankful that she did it so quickly (less than 10 minutes!) and with only one stick. She was great and I really wanted her to know that. What a difference she made for Harlie, and for us.

Anyway, she had a busy day and I'll go into more detail later. It is late and I want to be back at the hospital early tomorrow so I need to be brief.

The cath went well, overall. They were able to get access through her neck (UGH!). Located conveniently behind her trach ties (please note the sarcasm). Soon they will have to go through her liver (and I'm not joking). This was her 5th heart cath and it has taken its toll on her veins. And yes, in case you're wondering, she will definitely have more caths in the future.

The cath did answer their questions about her subaortic stenosis. There is tissue that has grown around the opening, causing an obstruction. It will need to be cut out during her surgery. He said that it could grow back and require surgery again in the future. Great. But we'll get more info from the surgeon when we talk to him tomorrow.

Unfortunately, the obstruction has caused a negative chain reaction through her heart and lungs = high pressure. If you think of your circulation as plumbing - it might help you visualize what that means. Since her ventricles have to work harder to pump the blood past the obstruction, they don't adequately relax between pumps. When the ventricles are relaxed, that's when the new blood coming from the lungs fills them to be pumped the next time. Since they can't fully relax, they aren't able to fully fill, causing a back up. Plus, since your heart is a muscle the more it works, the harder it gets, which is bad.

I can't remember exactly what he said, but... something about if the pressures are 15 or less, that's good and the Fontan can be done. If the pressures are 21 or higher, then that's bad and they can't do the Fontan. Her pressures are 19!!!

Although they are closer to the too high number, he said we really have no other option but to go ahead with the Fontan. He believes that by removing the obstruction (subaortic stenosis) that the pressures will decrease and her heart won't have to work so hard in the future. He said the only other option would be to remove the obstruction (open heart surgery) and wait a year, then see if the pressures have decreased, and if so, then do the Fontan. But that would mean adding another open heart surgery and why do that if they can do it at the same time. The only real negative (I think) is that her recovery from the Fontan could be harder on her as her heart and lungs adjust to all the changes.

Well, that's enough for tonight. Tomorrow she'll get a chest x-ray, another EKG and we'll meet with Dr. Jonas, her surgeon. Then we get to come home for the weekend.

Take care,
Christy

The Cath is underway.

Wow have we had a busy day! I looked at my watch at 11am and it felt like it should have been 5pm! Anyway, they took her back for her cath at noon. We got to carry her there, sit with her in my lap and I held the tubing that went on her trach so she could drift off to sleep. It was totally AWESOME!!! So much better for her and for us. Way less traumatic. I wish every procedure/surgery, etc. could be like that.

Well, I want to get back to the waiting area (I just ran to the library really quick to update), so I have to go. I will give more details tonight - complete with pictures, of course.

Thanks for all the prayers and well wishes! We are very thankful. We know the next few weeks will be rough, so keep them coming!!!

Take care,
Christy

We're home!

Well, we are home!

Harlie was discharged at 7:30 last night. Her cardiologist wanted her out of there before she got RSV or something. They took several chest x-rays and found that she had atelectasis (the collapse of part or all of a lung by blockage of the air passages) in her right lung.Once they weaned her off the vent and put her on CPAP (Continuous Positive Airway Pressure) she really started to improve. I just don’t think she liked the vent forcing her to breathe.

After a few hours of continuously turning down the settings on the CPAP, they went to her normal trach collar on high oxygen. Then they turned the oxygen down to a level that we could give her here at home. We had our equipment company switch out our 5.5 liter concentrator for a 10 liter one. By the time we had her home she looked much more like herself. How could anyone be happy with all that stuff – IVs, boards, blood pressure cuffs, etc.? The poor thing was like a pin cushion with all the blood work they had to get. She’s got little scabs on all her extremities. Luckily she had a really good nurse yesterday that was really good at finding tiny little veins.

Well, as far as how the heart catheterization actually went. Here’s what we know.

Findings from the catheterization:

• The band on her pulmonary artery is TIGHT. This means that it is very hard for her blood to get to her lungs to get oxygen (creates a bottleneck). This is why we monitor her oxygen saturation levels. We knew this would happen sometime. When they operate, they will do away with this artery and re-plumb her heart.

• They found another defect. A bridge between two arteries, or something isn’t there. This is just more information to give to the surgeon so he is prepared and gets no surprises during surgery. I think instead of having one shunt, she will need two, but don’t quote me on that.

• Her right ventricle is small. This probably means they won’t be able to do the double switch surgery. But, the surgeon will ultimately make that decision.

• The worst news we got is that no matter which surgery is done, Harlie will eventually need a heart transplant. He was thinking in 25-30 years – just a guess of course. Sounds like far down the road until you think that she would be younger than I am right now.

The surgery date is March 6, unless something happens in the meantime. I feel a lot better now knowing that Dr. Jonas will actually be there next week, so should things change with her status, we have options. It is hard to believe that we are here again. When she was born, March seemed so far away. We are not looking forward to this experience. I can’t begin to tell you how hard it is to see your sweet little baby like that. And this surgery will be way worse than her first one. But so far, she has proved to be a strong little girl, so hopefully she’ll kick butt. Well that's it for now. Thanks for all your thoughts and prayers. Keep 'em coming!

Take care,
Christy

Heart Cath

Hi. Well, tomorrow (Monday) is Harlie’s heart catheterization procedure. It is downtown at MCV. We don’t know if she will have to stay overnight. They might keep her for observation. But I am hoping that since we have a night nurse, they might let us bring her home. We have no idea when we will find out the results. This procedure should determine what operation(s) she will need and when. It will be really nice to know what’s ahead of us.

I was doing some research and came across some interesting facts:

At least 8 of every 1,000 infants born each year have a heart defect.

Corrected transposition of the great arteries (c-TGA) is a complex and unusual abnormality occurring in fewer than 1 percent of people with congenital (present at birth) heart disease.

It occurs in males twice as often as females.

So, I would say that means her heart defect is pretty darn rare, huh? Especially for a girl!

Well, we have a big day tomorrow, so I’m cutting this one short. Wish us luck!

Thanks for your support!
-Christy