Harlie had a bit of a rough day today. I picked her up from school around 12:45 and went to her speech therapy appointment at 1pm. After that, we went to her cardiology appointment with one of my favorite doctors - Dr. Gullquist. Here's the skinny on my concerns:
Higher oxygen saturation levels: Her sats are higher now than ever before, which is wonderful! She's lived in some pretty low numbers (60s and 70s) and is now living in the high 80s and low 90s. In the many conversations I've had with her doctors, this usually meant that if her numbers were higher, that meant that they could close her fenestration.
I will simplify the explanation to this: during her last heart surgery (called the Fontan) they created a hole (fenestration) in the connection that carries the blood from her body to her lungs for the blood to escape during higher pressures. If her sats were low, that meant that her pressures were high enough that the blood had to escape through the hole. As the pressures decrease, the blood passes the hole and does not need to escape, causing better oxygen saturation levels. I think the normal thought was that then you close the hole and all is well.
However, it is not that easy. Here is what I understand... leaving the fenestration open (as it is now) carries a low risk of the patient having a stroke. Performing the actual procedure of closing the fenestration and for the next six months after - carries an even higher risk of the patient having a stroke. And, because of that, they have to really thin the blood even more than it is now.
Plus, they think that in a failing Fontan (which is what will eventually happen, requiring a heart transplant) that if the fenestration is closed the patient gets sicker, faster. And if left open, the patient essentially buys a little more time to get a heart transplant. I'm not saying that if closed they can't get a transplant, but I think the window of opportunity is shortened.
The reasons to close the fenestration are: 1) if the patient wants to exercise more. So, if she wanted to run, for example, her sats would go down pretty quickly. The heart and lungs just can't keep up with the oxygen demands, requiring rest times. And 2) I can't really remember. Maybe it was to raise the sats a little? But, I told him that I saw 94 on her monitor the other day and he said that's about as good as they are going to get - even if we close her fenestration.
So, I really don't see any reason to close it. I'd rather go with the smaller chances of a stroke and a bigger window of opportunity to get her a new heart one day. I suppose if she ever does want to run or exercise we can revisit the situation then. Things are always changing and developing in the medical field, so who knows what they will learn in the next 5 to 10 years that might change our decision. And things are always changing with Harlie, too. So, we'll revisit this later if need be.
Low heart rate at night: Over the years her heart rate has been dipping lower and lower at night. I haven't really been that concerned because I know she has second degree heart block, so her heart doesn't beat at a normal rhythm - it will have longer pauses between beats on occasion, which makes the monitor indicate a lower beats per minute number.
This was expected to happen eventually, which is why her surgeon placed pacemaker leads in/around her heart during her first heart surgery at just four days old. So, she's sporting a Holter monitor for the night to see what's going on. I am pretty sure that she won't dip down to her lower heart rates tonight, just so she can make me look like an idiot.
However, if it is true that she is dipping down to lower heart rates than desirable, we will need to go on ahead and get her pacemaker hooked up and working. Everything is ready to go, they just need to install the battery device in her abdomen area and hook it up to the wires. I'll discuss the ins and outs of that when the time comes.
Bony protrusion to the right of her sternum: I recently noticed that she has a bony growth just to the right of her sternum. Since they cut the sternum for open heart surgery and then use wires to put it back together, the bone can just heal over the wires like that. I knew that this could happen. But, I really thought we were in the clear. It's been a year and a half since her last surgery after all. So, we do nothing for a long time until we think it needs to be fixed. Then they can shave the bone down.
When I noticed it, I automatically assumed that's what it was and so I wasn't worried. But, then today someone made me wonder if it was something more. Or different. Then I thought, "what if?" And then I thought, "what if I miss something big one day because my perspective of what's important is so skewed now?" Eh, that's just a bony sternum, not a mass of something deadly. Eh, that's just a screw coming out of her jaw, no biggie. Oh, her sats are 70? Whatever, they've been worse, I'll just give her some oxygen. Eh, her heart rate is 35? Whatev, I'll just lower the alarm setting so it doesn't wake me in the night.
I will say that I decided I will have to get CPR certified soon. Couldn't hurt.
She had an echo done (ultrasound of the heart) to check things out. She has a mild leak in there. It's still there, and still mild today. So, that's good. I don't ask anything about it, really. Because I'll deal with that problem should it ever arise. That's what yearly check ups are for, right? So, you know how they do an ultrasound with the wand (or whatever they call it) and the gel? Well, it doesn't hurt. But, try telling Harlie that! WHEW! She HATES getting an echo done. I tried to reason with her, but she would have none of that. I finally had to just hold her hands. I did manage to get her to hold my phone so she could play Angry Birds or something. Holding the phone did get her to calm down a little for a bit, but she wouldn't play it.
So, then Beverly (who did the echo) had to put the Holter monitor on her. Oh boy. That was torture. It's just a bunch of leads stuck to her chest. With wires attached to the leads. And then taped to her skin. What's the big deal? The wires are plugged into a reader and she wears the reader around her neck/shoulder. Oh, did she cry! After the monitor was in place, I tried to put her dress back on. She didn't want any part of that. If the dress went over the monitor, then that meant she had to leave with it on. And she was not happy about that! It was a long struggle to get the dress on her. I finally bribed her with the promise a Curious George DVD in the car and movies at home.
Once the dress was on, and the monitor went over her shoulder, she has not let it go.
I think she's afraid someone will tug on the wires or something, so she's keeping it close to her. Although I did manage to get a smile out of her...
When it was time to go to bed, she would NOT - I repeat NOT - let us take off her dress. So, she's sleeping in it.
The monitor can come off in the morning. I am so glad she doesn't have to wear it to school. But, I am not looking forward to removing it! I will have to see if I can get Terri to do the dirty work for me. I'm pretty sure she's going to be late to school.
Oh, and I just had to go upstairs and lower the alarm setting on her pulse ox. We set it to alarm at 40 or below. And it alarmed enough times that I had to change it to alarm at 35 or lower. So, maybe it will be indicative of what's been going on after all. I have to run the Holter monitor back to MCV tomorrow and he said he'll let me know the results early next week.
So, that's it for tonight. I have way more to blog about and I'm really hoping I can do that this weekend. Brandy is coming over this weekend to help out, so I think I'm going to skip over to the library to get some peace and quiet with my computer during the DAY so I don't have to miss out on sleep.
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