There have been some new developments regarding Harlie's pacemaker. A few days after our appointment in Fredericksburg, I read the clinical note from our appointment. A few key things stood out to me.
1. She wrote that while her goal is for Harlie to be active and do all the things she would like to do, she could not say that it is safe for her to travel out of state for camp.
2. In the plan bullet points it said if we do not urgently go for pacemaker revision, then I would like her to be seen again on June 4.
3. Any fainting should be treated as an emergency with 911 and CPR.
It said other stuff, too, but those three were the ones that made me think.
Then on Friday evening (like around 6pm) I received a text with a secure message from her doctor that she wanted to call me later that evening. I was like, huh? It is Friday night. That is highly unusual. So, I replied, of course, call me whenever it is convenient for you. Well, she didn't call. Later I looked at Harlie's phone and it appeared that my reply never went through. So, that didn't sit well with me. Obviously, I had to go through the whole weekend wondering. Also, now I'm afraid to leave Harlie alone at all. What if she faints and I'm not there to call 911 and do CPR?!?!?
On Monday morning I was able to speak to her doctor. She was so nice and asked me how Murphy's graduation was and how I was doing (since I cried in her office). I told her that I have a lot of big feelings and they are leaking out sometimes. She was very compassionate.
Then she told me that the team got together and discussed Harlie's case and decided that her pacemaker needs to be replaced soon. She said that they just needed to get in touch with Harlie's surgeon in Boston to ask him about manipulating her jaw so soon after her jaw surgery. She was thinking she would need to be intubated (with a breathing tube, the way most people are put under for surgery). So, I said, that won't be necessary, since she has a trach, you won't need to manipulate her jaw. She was like, oh, duh! And she apologized. I told her no worries - that's what I'm here for! Haha! I told her I am like her General Contractor. Then she said, no, you are her air traffic controller. I only know where my plane is - you know where all the planes are. Nice! I like it!
Then she said that they are working on a date and would call me back. The next day her other doctor called me. Her surgery is scheduled for Friday, May 29th. So, no camp for her. That is also two major surgeries in just over three weeks! Her wrist is still black and blue from her arterial line. And I know they are going to have to give her another. Anyway, he went over that they basically have two options. I'm going to try and explain it - really just for my records. It really comes in handy later if I write all this stuff down while I can remember it.
So, if I understand this correctly, there are two leads, each lead has two nodes (shaped like a Y). I think there are two atrial nodes and two ventricular nodes. The ventricular nodes/lead was placed on her heart when she was just four days old. They anticipated her needing them later.
As she got older, I think/guess her heart developed other issues that required them to place the arial lead/nodes. Or, maybe they didn't have room to place all the nodes on her 4 day old very tiny little heart. The atrial nodes were placed in March of 2012, when they placed the pacemaker generator and officially started the pacemaker.
So, I believe (if I remember all this correctly) that her ventricular nodes are 19 years old and the atrial nodes are 14 years old. The ventricular nodes are the ones that are failing, thus they MUST be replaced. However, the atrial nodes are still working, thus replacing them becomes more of a choice. If they just replace the ventricular nodes, I believe they can do a half sternotomy. If they replace all the nodes, they have to do a full sternotomy. Clearly, one is more involved than the other. So, do we replace just the ventricular ones - or both? Apparently, replacing both doesn't automatically guarantee that they will last for the next 10 years. They have replaced nodes/leads and they have failed after just one year. So, we don't automatically get that comfort of long lasting nodes/leads. It sounds like either way, whether they replace the atrial ones or not, they could still fail at some point.
I asked him if her heart is adhered to her chest wall by scar tissue, does that factor in to any of their considerations. He said he could not find the note that actually confirms that is the case. He asked me when we were told that. I told him I couldn't remember, but I would check to see if I wrote it down somewhere. haha. So, I searched my blog and found it - March 12, 2012.
Anyway, the next morning he called me to let me know that he ordered a CT scan and that we could do it at VCU to save us a trip to DC. While I had him I asked him if he would mind calling Tom and explaining what he explained to me the day before. When I explained it to Tom he had questions, and I did not know the answers. He said he didn't mind. So, later that day he called Tom and went over everything. By then, he said he did find a note in her chart about the adhesion to her chest wall. Great, so I'm not crazy. I believe he told Tom that if that is the case, it complicates matters a bit. Maybe things can change? I don't know. So, we went yesterday (Thursday) and had the CT scan done. Her doctor told Tom that they hope to have the results soon so they can make a plan. They are supposed to call us early next week.
As of now, she has a pre-op appointment at 9am on Thursday in DC and then surgery Friday am. We are working on getting a room at the Ronald McDonald House there, but I don't think they can confirm anything until next week.
What I do know is that she will not return to school this year. It is just not worth the risk - of her getting sick or her just wearing herself down more than absolutely necessary. On Wednesday, she didn't leave her room. When she has the energy, she will come downstairs. She clearly didn't have the energy. Then yesterday, I made her leave because she had the CT scan. We'll see what she does today. So far, she is still in her room. This is two major surgeries in just over three weeks - and that is a lot for her.
Regarding camp - clearly she cannot go. When I found out, I emailed them and asked if they would please consider letting her return next year for her last year and I couldn't believe it, but they said yes! We didn't want to tell Harlie anything until we had more information (like a date and an answer to the camp question). So, when we had those, we told her. She took it well. She asked where and we said DC. She said that they called her cell phone that afternoon but she didn't answer it. She said, "It wasn't any of my business, so I didn't answer." We had a little chuckle because it actually is her business. Anyway, I am pretty sure she doesn't understand that she will have some version of a sternotomy. I'm guessing that is a coping mechanism - keeping herself in the dark when she can.
Back to yesterday (Thursday), I've been trying to get her scheduled for a haircut, but it really hasn't been a high priority and we just haven't had time lately. I did finally schedule it for June something - but now with her surgery next Friday, I really wanted it cut before. Her hair can be a challenge in the hospital. There's just so much of it! After her TMJ surgery, it was full of blood. I have washed her hair so many times since, but I feel like I can still smell it! Anyway, I thought a cut would make life easier post-op. So, on a whim I asked my person and she happened to have a cancellation at 4:30 yesterday. Wow - that is perfect! Her CT scan was at 3pm, so as soon as that was over I just stopped at the salon on our way home. Wow. Things rarely work like that!
So funny, as I was walking up I saw Melissa (she cut my hair for YEARS before she made a career switch). Then I walked in and Donna was there getting Alex's hair cut! How crazy is that? And then Patti was there getting her hair done. How crazy is that?! It was such a fun way to end the day - seeing some of my favorite people!
Well, last thing - we got Murphy all moved in. Well, there are still a few things here he might still get. But, for the most part, he's settled into his apartment. I have been adjusting to the little things - not leaving a light on for him (since he would get home so late when he closed), not knowing that he got home safely after work, and of course, not seeing him everyday. I know it will get easier, but I still miss him anyway.
Also, I feel the need to just say to all my loved ones, that I'm pretty focused on us surviving right now. Things are little overwhelming at the moment. So, I'm not asking how you are or what's going on in your lives and I'm sorry about that. I care - I just can't show it like I normally would. One day, life will calm down again and I hope to get back to being a regular person. For now, I do not feel like a regular person. My worries are big right now and they take up so much space. Thank you for understanding.
Much love,
Christy xo
