10.03.09
Finally, some news
We finally heard from the scheduler yesterday. She knew nothing about it needing to be done sooner rather than later and the doctor is out of town. She texted the doctor to find out what he wanted done, since the only spot on the schedule that she could see to squeeze N in would be Monday. This was at 4:30 on Friday afternoon. She was kind enough to take N’s information home with her so that if she heard from the doctor she could contact him over the weekend.
She called yesterday evening to say that the surgeon does want him squeezed into the schedule on Monday. But she’s waiting to find out if the hospital will have the OR space for him. So N is to plan on having surgery Monday, nothing to eat or drink after midnight Sunday, and by 9:30 we should know if he has to come to the hospital or not. Nothing like last minute warning! I sure hope they fit him in so we can get it over with.
After the surgery he will not be allowed to return to work for 3 months. Also, he’ll have lifting restrictions for that 3 months that mean he won’t be able to pick up the kids (he hasn’t been allowed to since the doc saw his MRI and said he was surprised he was walking). It’s going to be difficult, but I know we have lots of love, support, and prayers backing us up. We can meet the challenge. I do not like being on this side of the OR, but N has seen me through so much and I will do everything I can to help him through this.
06.07.09
No babies yet…
We went in to L&D last night around 9 PM. We found out that LD was 4 cm dilated, 50% effaced, and at “station 1″ (whatever that means). We expected the babies to make their appearance before the end of the night. N came up and arrived around 1 AM. However, at noon today she had only made it to 6 cm and we were given the option of giving her pitocin to speed things up, or coming home (LD’s home, not ours). We chose home. Looks like the babies just wanted to tease us. Please pray we’re back at L&D tonight and it’s the “real deal.” I know we’re all very anxious to meet Kyla and Lucas. Not to mention a tiny bit disappointed that they didn’t cooperate last night/this morning. If they don’t come tonight, we have an OB appointment tomorrow, so I’m pretty sure we’ll end up with babies tomorrow if nothing else (LD thinks he’ll push the pitocin and she might agree this time). I’d rather them come tonight, but God (and they) doesn’t always want the same things I do..
12.16.08
God (or Mother Nature) had other plans
We did not get to go to OK today. 
Partially because of the weather and partially because I didn’t get away from the doctor’s office until 6:00 PM. We saw Dr. W at 10 (we were taken back at 9, but he was delayed by the weather, we think).
At that point we knew we wouldn’t make it to OK, since we would have to drive much slower than usual and it would be pushing it to get there even without the weather complicating things. So when Dr. W said I would need to meet with the surgeon, Dr. R, and a cardiologist, Dr. B, we asked if it would be possible to see them today so I wouldn’t have to take another day off from work. They sent me down for an x-ray while they tried to set up those appointments.
While waiting for the x-ray we got a text from LD that she had rescheduled the OB appointment because the weather was getting worse. It’s now scheduled for Monday at 2:15.
When we came back from there (around 11:30) we were told we had an appointment with Dr. B at 2:00 and Dr. R at 4:30. We left to go eat lunch and swing by a book store so N could pick up a book to help pass the time. We got back to the office shortly before 2:00 only to find out that insurance won’t pay for two cardiologist appointments in one day (Dr. W and Dr. B). They didn’t seem to have a problem with seeing the surgeon, though. I asked if it was necessary to see Dr. B in order to get the surgery scheduled and the receptionist talked to Dr. B who said she would just talk with Dr. W and skip seeing me for now. We then had to wait to see Dr. R. At 3:45 we were taken back, which absolutely amazed us, since the appointment was for 4:30. However, we shouldn’t have been surprised that we didn’t actually see Dr. R until 4:45.
The appointment with Dr. R went well. He is going to try to get things moving along to get the surgery in during the holidays, but he wants some more data first. He’s thinking that as long as we’re opening me up, he wants to make sure there’s nothing else we could do to help me feel even better. In particular he’s thinking there might be a way to open up my pulmonary stenosis and ease some pressure in my ventricles. But before he makes that decision he wants to do a TEE. While I don’t particularly love the idea of having open heart surgery, if he says he recommends it, that’s what I’ll do. After all, I want to feel as good as I possibly can before the twins come.
So now I’m waiting for the TEE to get scheduled. Hopefully I’ll hear from them tomorrow. Oh! And he also wants to discontinue the IV antibiotics. So I plan to call Dr. H’s office tomorrow morning and let them know so I can go in the afternoon and get this PICC line removed! 
10.27.08
Today’s update
The third beta results are in and they are……… 1334!!! There is no doubt in my mind that we’ve got two little beans growing in there.
Now we have to wait until 11/7 (11 days, but who’s counting? 
) to find out how many there are and (hopefully) see a heart beat. It’s going to be TORTURE to wait! I talked to the nurse at our RE’s office and she said that if we’re doing an u/s at LD’s OB office then we don’t need to do one down here (unless we want to). LD and I kind of want to, but I’m going to discuss it with N. I’m not sure what he’ll think. On the one hand, we’d save money on getting LD a plane ticket to come down. On the other hand, we’d get to see our baby(ies) again. I guess we’ll see what he says and go from there.
Now on the other end of the spectrum, I also found out today that I’m back in limbo about the surgery. I found out this morning that the accreditation for the Children’s guy STILL hasn’t gone through and so they’ve taken me off the schedule for Wednesday. The scheduler said they are aiming for Nov. 6th or 10th now. I told her “If my vote counts at all, I’d prefer the 10th. I have somewhere to be on the 7th.” She said she’d try to work it out. I hope that I won’t have to wait any more than that! This has already been going on for over a month!
09.26.08
Friday update
Since I know how frustrating it has been for ME to not get an update, I figured I’d send one out to all of you.
I went to Dr. D’s office this morning so the NP could check my incision and so I could show him my uvula (you know, the thing that hangs down in the back of your throat? Mine’s swollen and yucky looking.). After he looked over everything, N and I pretty much poured our guts out about how frustrated we have been with not knowing anything and no one seeming to bother keeping us in the loop. He said he completely understood and then paged Dr. D so that he could give us any information he could. This is what he came back with:
On Wed. Dr. D decided he wanted a little more data before taking me back into surgery on Thursday. He contacted the Mayo Clinic to see if they had some pictures that could show more precisely where my blood vessels are. They apparently did not have that information. So now he is working with Dr. P (my cardiologist), who has put him in contact with an EP at Children’s here in Dallas, Dr. S. So now Dr. D and Dr. S are talking and trying to figure out what the best plan of action for me is… No one knows when this will be decided.
I went ahead and decided to go in to work for the second half of the day. I figured it would help keep my mind off of things and I had a bunch of stuff I needed to get done anyway. Not long after I arrived I got paged over the loud speaker to come to the office. Having no clue why they would call me down, I wandered in. Turns out Dr. P was on the phone for me! I had not called her, but she felt like it was important to let me know what was going on so far (novel concept!).
She gave me almost the same exact information I’d gotten earlier in the day, but she did add a little more. She said that Dr. S is trying to figure out if the benefit of the bi-ventricular pacing outweighs the risks of putting me through yet another surgery. When Dr. P pointed out that my heart function has improved since getting the ICD he said “but is that because of the device, or because of the meds?” Well, I can honestly say I believe it’s the ICD. I had been on the meds for quite some time with no improvement. But shortly after getting the ICD there was significant improvement. To me, there is no question. But this is apparently where the doctors are now.
So I still know nothing, but at least I know who is talking about me behind my back and what the hold up is. I don’t know when I will know anything, but I’m hoping we’ll be more informed than we have been up to this point. I seriously doubt I’ll find out anything over the weekend. It would be nice, but I won’t hold my breath. I’ll let you know if I turn out to be wrong.
On surrogacy news, everything is still set to go for starting stims on Sunday! Woo hoo! Getting closer! 
09.25.08
Some good/Some bad
First the good news:
I went in this morning and had my baseline sonogram for the surrogacy. Apparently the slight spotting I had is about all I can expect, since they are suppressing my system so much. Everything looks good there and we’re all set for me to start stimulating my ovaries on Sunday.
Now the not-so-good news:
I finally heard from my EP’s office and we are NOT having surgery today. Or even this week for that matter. The scheduling person I talked to said that he has a lot more coordinating he needs to do before doing my procedure. Also, something about talking to the Mayo Clinic doctor. She said she thought he would have called me by now, but since he hadn’t I should expect to hear from him this afternoon or evening. If I don’t, she says to call her in the morning. She says he’s aiming for next week. Well, news flash, next week is no good for me. I’ve got appointments with for the surrogacy set up for Tuesday, Thursday, Saturday, Monday, Tuesday, and Egg Retrieval on Thursday. The transfer is the following Sunday or Tuesday. He’ll just have to wait until after that. I’m tired of not being told what is going on. If he can’t coordinate with ME, then I’ll have my cardiologist find me someone who can. I’ve said it over and over. I like Dr. D as a doctor, but only when he actually talks to me. Unfortunately, more often than not I’m left completely out of the loop and my frustration continues to mount. If he would just tell me why there has been a delay or what he is thinking I could deal with this much better. I’m planning to call my cardiologist and see if she can get me any information. It’s ridiculous that I have to go through another doctor just to get any information from this one.
I’ll let you know if/when I find out more. I’m thinking I may go in to work tomorrow. It’s a light day and it will keep my mind busy. I’m going to see how I do today.
Thanks for the prayers.
09.24.08
Killing me slowly
UGH!!! I think Dr. D’s office is trying to kill me off. I seriously do. Here it is, 5:45 on Wednesday evening and I still do not know when my surgery, that’s SUPPOSED to take place on Thursday will be. I called at 11 like he told me to. I had to leave a message. No one called me back. I got a call from someone else in his office asking me who my surgeon at the Mayo Clinic was (don’t they have this information!?!?) and if I have his #. I waited and waited to hear back. Nothing. Around 3 I tried calling his scheduler again. As soon as she found out it was me she said “I have to talk to Dr. D and I’ll call you back.” Nothing.
I had N call about 20 minutes before 5. She said she couldn’t schedule anything until she got the orders from Dr. D, but he is still waiting to hear from Mayo. WHAT?!?! When I saw him yesterday he didn’t indicate there was any question about what he would be doing. So why do we suddenly have to wait on the Mayo to call back? N asked if the surgery was still going to be tomorrow and she said she had no idea. I said “So do I eat after midnight?” And she said “Better not, just in case.” She says that someone will call me in the morning and let me know unless Dr. D calls me himself tonight.
This is SO cruel!!! How in the world is a heart patient supposed to deal with this much stress at once?!? Plus, I’m supposed to have that sono tomorrow morning (was originally Friday morning, but I changed it because I thought I’d be in the hospital) and I have to get my period before then and I think the stress is holding it at bay. 
I’m afraid to ask “What next?!”
09.15.08
The waiting never ends…
I’m pretty much still in the dark about what is to come. I do know that the atrial lead is in fact fractured and I will be having surgery to replace it. However, I do not know the when or where. My EP is at the hospital today, performing procedures. So when I got to his office I was checked by the ICD representative and it was confirmed that I had a fractured atrial lead. The files were hand delivered to the hospital (a good 5-10 minutes away from the office), where they are sitting and waiting for my EP to come out of the procedure he’s performing so he can look at them and figure out a) how quickly this needs to be done (based on how I feel, I’m pretty sure it needs to be sooner than later), and b) if he can perform the procedure himself, or if I need to go back to the Mayo Clinic. We were waiting for TWO HOURS because, according to the rep, my EP didn’t want me leaving the office until he had figured out what we were doing. That apparently didn’t matter as lunch time approached. At 11:30 we were told that we could leave and they would call us. I’m hoping we won’t be waiting much longer, but who knows.
I’m trying to decide if I should go ahead and call my RE office and let them know what’s going on, or if I should wait until we know more. I don’t want to wait too long, or I might not get ahold of Ronda. N is home today, but works tomorrow. I had the thought that maybe we could go in for the patient teaching today and that way we’d know what needed to be done on Wednesday, even if we have to make an unexpected trip to MN. I guess I’ll wait a bit longer. At this point I doubt we’d be able to get in for teaching today anyway…
08.25.08
Ugh. Never mind.
Well, AF is apparently being illusive. Even though LD thought AF was here, she stopped and skipped town. She hasn’t come back yet. This means she did not start BCP and we are back to waiting.
Today her son is having his tonsils removed, so as much as I’d love for AF to come back today, I hope she doesn’t have to deal with her on top of this stress. Which, I suppose, could be why AF left in the first place. Hopefully things will get moving along soon. Until then, we wait…
07.21.08
Nevermind…
I called Dr. C’s nurse today like he told me to. Come to find out, I should NOT have started BCP with this cycle, as it’s too soon. Dr. C was mistaken, so I am to stop taking the BCP (since I only took one it shouldn’t cause problems), then we’ll start with my next cycle instead. Guess we weren’t as far along as I’d thought.
