Post-Op Days 11-13 - Headed Home!!!

Sunday, June 19 (Post-Op Day 11)

Saturday was a better day than Friday. The emotional roller coaster of Friday made for a miserable, mentally exhausting day. Since we didn't have that on Saturday, I think it was just better. 

Tom got Harlie out of the room for a bit. He found a room with some arcades and they played in there for a while. 

Tom and I got out for lunch and took an uber to Union Market. We walked around, went into a few stores, and got lunch. Then he made me take a scooter back to the hospital. I didn't want to take a scooter for a couple of reasons. One, walking is the only form of exercise I get when we're in the hospital. I feel like I would fall apart without that. Two, I am a big wimp and I am afraid. Traffic and people are crazy here. Seems like a risky activity to me. Haha. But, Tom made me and it was way easier and more fun than I thought it would be. It was also a lot faster and we were able to get back to the hospital before the rain. 

We took the scooters back to the hotel and changed for dinner. We had a really good dinner with some wine and we talked about how much better the day was than Friday. 

Today is Sunday and I am in a crappy mood. I woke up with a crick in my neck and it is very irritating. I am tired of doing this. I miss my life. When you're in the hospital - life just stops. I don't like it. Plus, everything is just harder because you're not in your own space, using your own stuff, doing your own thing, etc. Also, there is a little girl a couple of rooms down from Harlie. She is probably about six months old or so. I haven't seen a parent or family member with her yet. She is in her crib in her room all by herself. It is breaking my heart! She was crying yesterday and I wanted to go in there so bad! I feel awful about the cards Harlie was dealt. But, at least she is LOVED. I have given up so much of my life to be able to be with her every single day of every single hospitalization, doctor's appointment, etc. It just makes me so sad that that little girl doesn't have a mom like that. I have to stop thinking about it, because there is nothing I can do.

Yesterday (Saturday), some of her docs came in and said that the wound vac would stay on until Monday, regardless of how much drainage she has. 

The other morning I woke up after having dreams that her incision got infected. Obviously, I hope and pray that doesn't happen. I will be so happy when we get home, with a new pacemaker and the risk of infection safely behind us. I have been fearful for well over two full months and that is an exhausting way to live. 

Monday, July 20 (Post-Op Day 12)

Yesterday we changed up our schedule a bit. We ate lunch in her room and then left in the afternoon to go watch the soccer game. Tom made a reservation at a Spanish restaurant. I'm not sure if I've mentioned it or not - but we are supposed to go to Spain in late August/early September for our anniversary. Tom's been planning it for a long time. Anyway, so we thought we would go to a Spanish restaurant since Spain was playing. Well, we had the entire restaurant to ourselves. Haha! They put the game on the tv in front of us and put the sound on and we watched it with the restaurant staff. Just us. So crazy. 

Then after the game, we went back to the hospital to spend some time with Harlie. Then we took scooters back to the hotel. 

This morning her surgeon came in to see how the wound vac is doing. I was more hopeful yesterday because it really looked like the tubing had nothing in it. But, this morning, there are drops in the tubing that you can clearly see. Ugh! So, her surgeon says she wants to think about it. She also wants labs because I guess there are inflammatory markers in your blood that can sway their decision making. So, it is now 10am and we don't know what the plan is. Take the wound vac off and do a dressing trial for 24 hours again? Put a portable wound vac on and send us home? Leave the wound vac on? Or change it to a new wound vac? 

I hear them - if this were to get infected, it would be life threatening. So, part of me wants to say just put a new wound vac on and we'll just stay. If that's the safest thing - then let's just do that. Then we would KNOW what our plan is for the next 48-72 hours. This not knowing what they are going to do or when they are going to do it is killing us. I mean, how are we supposed to live like this?

I can tell you one thing for sure - I will never pack light for a hospital stay again. 

I'll update again when I hear back from the surgeon.

Oh, we went outside to the healing garden this morning and Harlie painted some rocks. 

2:30pm - still no word. 

Oh, I walked past that little girl's room this morning and I saw a family member holding her. Whew! Then, the next time I walked past her room, she was gone. Like the girl has been moved or discharged. I guess they came to pick her up.

6pm - The surgeon just came and removed the wound vac. She put a dressing on it and said that if it is dry tomorrow, we can go home. 🤞

Back to waiting. 

Tuesday, July 21 (Post-Op Day 13)

I had a hard time sleeping. That stupid crick in my neck has gone down my back and it was impossible to get comfortable. I went on ahead and packed up my things and took my bag downstairs just in case we get word we can go home, I can check out over the phone and just pick up my bag on our way out of town. 

When I got to Harlie's room, I looked at the dressing and it was DRY!! 

Dr. Tongut just came by and looked at her dressing. She said she can go home! Hallelujah!!

I am so fucking happy. I cannot wait to be home again! I'm still going to need some time to recover. Sometimes the hardest days for me are the first few days after we get home. When I'm here in the hospital I just have to power through. But, then it hits me later, when I'm in my comfy space. Also, even though we are going home and all looks well now, I remember our past experiences. We have been weeks post-op, with healed incisions, just to have an infection appear. So, I don't know how long it will be until I feel that we are safely on the other side of this. 

They just rounded and they are now working on all the discharge stuff. Woohoo! No rest for the weary though - we have so many appointments in the next few weeks!

Well, I'm going to sign off now so I get her all packed up and ready to go. 

Thank you for all your love, prayers and support over the last few weeks and months. We appreciate it more than you know!

xo,

Christy

Post-Op Days

Hi,

I have tried to write several times over the past several days, and I just haven't been able to do it. Either the days are so busy (constant interruptions make writing impossible) or I am just too tired to do it. It is now Monday, post-op day 5. It has been a VERY busy day. I'm just going to try to summarize because I don't have the energy for details right now.

Before surgery

Waiting to go to the OR.

Our friend, Geoff, was in town for a conference so we had dinner together. 

Post-Op Day 1 (Thursday)

 

Harlie coughed so much. It was terrible.

She bled through her chest incision. Surgery came to take a look and they put a wound vac on it. This means days more in the hospital. A wound vac (vacuum-assisted closure) is a device used to promote healing in complex, slow-to-heal or large surgical wounds. It operates by applying continuous or intermittent negative pressure (suction) to remove excess fluid and draw the edges of the wound together. 

She is very puffy (fluid overloaded). They want to give her Lasix to help her get some fluid off, but I think her blood pressures are just too low. 

Her lungs look crappy in her x-rays.

Post-Op Day 2 (Friday)

This guy, Mike, came to play video games with her. What an awesome job this guy has! He was great and she perked up for sure. 

She's on antibiotics for her new pacemaker hardware placement and for potential pneumonia. 

She's still really puffy. 

They took out her neck line.

Post-Op Day 3 (Saturday)

They took out her arterial line. She is ready to leave the CICU, but they don't have a bed for her yet. 

Post-Op day 4 (Sunday) 

She got moved from the CICU to the HKU (heart and kidney unit aka "the floor"). 

Yesterday was a better day than today. She is super quiet and definitely not as happy today. I'm guessing she is tired of being in the hospital. I don't just mean because this is day four - I mean because this is her third hospitalization in two months. She's had a lot of sticks and pokes this stay already. She lost an IV today and they had to start a new one. The first try didn't work, so she had to be stuck again. 

She has some pitting edema in her legs. Well, really from her waist down. We really need to get her up and moving. But, with the bleeding and oxygen needs, that is easier said than done. So, I told her that we are just going to walk around the bed if that's all we can do. She definitely understands the whole - what do I need to do to get the hell out of here - bit, so she will do what she has to do. 

Tom and I tried to go get lunch today. That was a fiasco. We left around noon and knew we had to be back by 2pm to help her physical therapist get her up and walking. Tom found a restaurant, checked to make sure it was open and we went. He parked, we went into the place and they told us they were closed. So, we went back to the car. He found another place, went to that place, had to drive around to find a place to park. We went in, ordered and tried to pay. We are using a card that our insurance company sent us for food reimbursement for our Boston hospitalization. The card is swipe only - no chip. Well, the equipment this place had only used chip. Or the swipe was broken. Either way, we couldn't pay. The person working couldn't have cared less, so between the cost of the food, ordering from a kiosk while the person watched us, then not getting any help with the card, we just left. So, we tried a third place. But, parking was a definite no and by then we had to be back at the hospital in like 30 minutes. Sometimes it just feels like the universe has other plans for us - plans we didn't want. So, we just went back to the hospital and had some protein shakes. It was a crummy day overall. 

Post-Op day 5 (Monday)

Today was super busy. I walked to the hospital and stopped in the cafeteria on the way up and grabbed some breakfast. I didn't get coffee, because they offer free Starbucks in the family area in the unit. So, I went to get a cup and they were completely out. So, I had to go back down to the cafeteria to get coffee. So, I logged like over 5,000 steps before I had my first sip of coffee. In the hospital - everything takes more effort. This is another reason why you survive in the hospital and you live at home. 

One of her cardiologists just came by and asked if she has seen her liver doctor recently. I think she saw him in November. Maybe her liver is having a hard time with the fluid (as well as her lungs) and that is contributing to her edema. It is crazy. If she were going home today, she wouldn't fit in the clothes that she wore when she got here. I've never seen her like this before. They got a weight on her this morning and she is up 10 pounds from her pre-surgery check in weight! Isn't that crazy?! So, they put her back on IV Lasix (they had switched her from IV to oral on Sunday). They are also getting liver labs and they are going to do an echo and an EKG just to make sure that everything is okay.

Her surgeon stopped by in the morning and said she was going to return in the afternoon to either change the wound vac or remove it completely. Later, the same nurse who put on the wound vac came and she said that the surgeon told her to change it. So, she removed the old dressing and examined her incision. She did say she was surprised that it was still bleeding so much. Ah, in typical Harlie fashion - doing things her own way. Her incision looks strange to me. It is like it has opened up a bit, so there is a valley down the middle of the incision. I think we all thought it was strange. Her nurse couldn't really tell what was happening there. She took a photo for her surgeon. It continuously oozed while we were looking at it, so it seems like keeping the wound vac on it makes sense. Even if that means we have to stay here longer. I would hate to get her home and have issues and then have to bring her back. So, she put a new wound vac on. Oh, she said that you can go home with a portable wound vac. But, hopefully it doesn't come to that. 

Also, it seems like the edema is keeping her here anyway. They aren't going to send her home until that starts to resolve. 

The team called in an immunology consult so I had to go over all of Harlie's history with her. That was a lot. She wanted to know every time she had any kind of infection (including pneumonia) plus all of her surgeries. That took a long time and a lot of my mental energy. I swear - it is UNREAL how much we have been through. My poor kiddo. She has every right to be over this hospital stay. 

Physical therapy came by and we got Harlie up and walking around the room. I got her up many times today to have her walk around and hopefully that will really pay off soon. 

Post-Op Day 7 (Wednesday)

Obviously I have not felt like writing this stay. The days are just so busy and with the constant interruptions, writing feels too hard. 

Surgery came by this morning, and with her edema, she said she just wanted to keep everything the same today. So, the wound vac will stay on for another day. I can't remember when, but the other day she said she might put a suture in her incision. The reason why I'm mentioning it is because you really have to stay light on your feet in the hospital. They say things but then they change their minds. That's just the way it is. But it does add to the mental challenges. There's just not a lot you can hold on to - or count on. It just changes the way you think.

I was counting the days to figure out what post-op day we are on and I was legit surprised it was only day 7. It feels more like day 14. Life in the hospital is so different. I really don't recommend it. Haha.

Back to her edema, they are keeping her on three times per day Lasix via IV. They said maybe they can start to wean her down tomorrow. So, now we are looking at a Friday discharge at the very earliest - and that is if things progress quickly from here on out (progress has not been quick thus far). Saturday is probably more realistic. Although, yesterday I was thinking Thursday or Friday. Clearly, it is too soon to be thinking discharge. The team hasn't mentioned it yet, so we are probably still a few days out.

They said her echo was fine, by the way. So, we just need to wait out this wound vac, I guess. 

I am so glad that her surgeon decided not to do the sternotomy to try and replace her atrial lines. I cannot imagine what that would've looked like. What the surgeon ended up doing was relatively minor and Harlie is still here, seven days later, still recovering. Even the wound vac is atypical of what she had. If that surgery had been hours longer, she would have had to get more fluid and she would be WAY worse. Her low blood pressures make everything more difficult. Between the risks of the surgery itself and the complications of recovery, I can see why she was reluctant to do more than she did. 

Post-Op Day 8 (Thursday)

Her nurse this morning said that they could not give Harlie her last dose of Lasix last night. Her blood pressures were too low. 

They came and got another EKG and an x-ray. 

So far, I haven't seen surgery. Hopefully they come and remove the wound vac today. 

Her surgeon came by and removed the wound vac. That one pesky little spot is still leaking! She put a dressing on it and said if it gets saturated she will put the wound vac back on. This is because she is trying to reduce the chances of infection. Anytime there's hardware in the body (new pacemaker generator and wires) there's a risk. Given Harlie's history with her post-op infections with hardware (prosthetic TMJs) - her risk is even greater. 

This is how it looked when we left for dinner. 

More waiting. We are supposed to check out of the hotel tomorrow. We have already extended our stay once. We checked and we can extend again if necessary. But, man, I really hope we don't have to. This not knowing what each day will bring has gotten old. My safety seeking nervous system is worn out. We have basically been living like this for months. 

Post-Op Day 9 (Friday)

This is how it looked this morning. 

8:30am: Surgery came by and removed the dressing and examined her incision. For the most part, it looks pretty good. There is still that one tiny hole that is leaking serous fluid. They discussed and decided she could go home with dressing changes as needed. Thank God. 

While I clearly REALLY want to get out of here, I don't want to increase her risk of infection. So, I said nothing to help sway their decision. They increased her antibiotics to cover her for a total of 14 days. 

9:45am: Tom went to go check us out of the hotel and when he comes back they are going to go over all our new meds, CPR stuff and discharge paperwork.

I think they want to see her in a week or so for follow up. We have so many appointments scheduled for the next few weeks. I can't even look or think about it right now. 

11:00am: Fucking hell. A surgeon just came to see us with the nurse practitioner who was in rounds when they said we could go home. I could tell by the look on their faces that it wasn't good. He said that the surgeons discussed it and they decided that they want to put the wound vac back on. You have got to be kidding me. I just can't believe this is our life. They both said they were so sorry, but they want to be safe and that it is just too risky to let her go home with that drainage. He said they won't let her go home until there is no drainage at all. WELL, WHEN THE HELL WILL THAT BE?!! Nobody knows. 

Remember when I said that they change their minds? OMG. 

Of course Tom is back from checking out of the freaking hotel. Thank God he called and we were able to get our same room back. Even though the air conditioning keeps on breaking. I really can't believe this. We have appointments next week that I'm going to have to reschedule. We have the doggies to think about. WE HAVE A LIFE TO GET BACK TO. Ugh. This is just so upsetting. I just can't write anymore right now. 

We were packing to go home and in the blink of an eye we are back to not knowing when we will go home. Fucking hell. I know the surgeon felt bad. He said he came to tell us himself because we felt so bad about it. But, if something is coming out, then something can get in. He said they want to do the safest thing for her. 

I'm stopping this now. I'm sorry if you've been wondering how she's doing. I just am having a hard time finding the energy this time. Also, bring really honest, I am miserable and I just don't want to hear positive crap right now. I want to just sit in my miserableness for a minute. 

Thank you for all the love and support. Clearly we need it. Also, I'm not going to proof this right now, so ignore my mistakes. Thanks. 

xo 

Christy 

Pre-op and Surgery Day (Pacemaker Revision)

Hi,

So, as I am starting this, we are just two hours into her OR time. They took her back at 8am. I literally just ran into Dr. Berul, one of Harlie's EPs. I said, aren't you supposed to be in there right now? Ha. He said that's where he was headed. He said it takes a while till they are ready for him. 

Anyway, yesterday we drove up for our 9am appointment time. She got labs, chest xrays, talked to a bunch of people and answered a bunch of questions. 

Two of her EP docs came to say hello (she has 3 different ones that we've worked with over the years). 

I mentioned at the end of my last post that they explained lead related things that made us feel better. 

The surgeon came in and met with us. She explained some things that we had trouble grasping over zoom. But, she also drew us pictures and that helped a lot. I should've taken a picture of her drawings, but I forgot. 

They showed us her x-rays. 

This was taken yesterday and shows her new Fontan stent. Crazy.

 

This is an older x-ray, but they wanted to show us the lead placement without the stent in the way. 

The good news is that the leads are near the bottom of her heart. So, maybe she can get to them without the full sternotomy. I'm really focusing on this as a positive, even if it isn't. Whatever works. 

During our talk, she said that we could probably hear hesitation in her voice. She said that when the patient is on bypass, that allows her to be more courageous. So, not being able to count on that changes things. She looked at us and told us that she is going to do her best. She was very caring and genuine and we believe her. 

I honestly had to really fight back the tears. But there is no way I can cry about it in front of Harlie. She does NOT need to see me so worried. So, a few leaked out and we had to move on. 

We left and went to the zoo. Somehow it came across my Facebook feed that the zoo had a new surprise porcupine baby, called a porcupette. So, we wanted to see her. This is the picture they shared on Facebook. The baby is much bigger now. 

I did not take this photo. 

Harlie had fun and it was a good way to get through the rest of the day. 

After the zoo, we got dinner, checked in to our hotel and then I got her all prepped for surgery. I got her showered and then had to wipe all of her skin with these prep cloths. 

At dinner, Tom was feeling more positive and he made me feel better. Unfortunately, fear had already moved into my head and I just can't get it out - like a squatter. We focused on the things that are good, like she is well, she isn't sick. We aren't doing this because her heart is failing. She is strong. Her docs are prepared and capable. 

I fell asleep "fine" but awoke at 2am, just feeling fretful. I finally fell back asleep, but had a dream that Harlie was a baby. Lots of memories mixing with the present. 

We got up at 4:45am to get ready to come to the hospital. After we got back to the preop area, one of the anesthesiologists came by to talk to us. She mentioned that they might have to remove her trach and intubate from her mouth or nose to make room for the surgical area. I was really only half listening until I heard that. I asked her if they let her ENT know that and she said yes. I was like, okay, I guess they will figure it out. But, she is not an easy intubation. 

Just a few minutes later a doctor stopped in and asked if this was Harlie. We said yes and he said he was with ENT and that he was a fellow with Dr. Preciado (Harlie's ENT) when she was in the OR some years ago. He said he knows that she is a VERY difficult intubation and that they were just hearing about all this. So, he needed to go talk to some of her docs. 

A few minutes later the anesthesiologist came back and said they were going to leave her trach in and not attempt intubation. 

It is so crazy to be constantly reminded how incredibly unique and complicated she is. I have this visualization of Indiana Jones trying to get to whatever he's trying to get. But in order to get to it (or escape with it) he has to survive all these crazy booby traps. All of her unique, complicated stuff are booby traps on the way to replace the pacemaker. 

Anyway, got another update.

We ate lunch and took a walk up the stairs just to move our bodies. I'm actually feeling more calm. I'm guessing it is because we finally got to the top of that damn roller coaster and now we just have to wait for it to be over. 

After we walked up the stairs (about 15 floors) we went and got coffee. Then we got another update. 

So, now I'm back to being worried. Seems too quick. But that could mean that things went really well. Ugh. This is so exhausting. 

We are now hanging in the CICU waiting room. It is 1pm. 

Geez, my stomach is in knots. 

1:24pm. The surgeon just came to talk to us. She said:

• She could not get to the atrium. So, no new atrial leads.
• Her scar tissue is hard as (and she knocked on the table). She said, is it cartilage, scar tissue or bone, I don't know - impossible to get through. 
• She had to try a couple of locations but they were able to find a place that Dr. Berul was happy with. So, she now has a new generator and a new ventricular lead, hallelujah! 

So, honestly, we likely got the best case. We got the most critical lead placed and we got a new generator. Most importantly, nothing bad happened during the surgery. We are so relieved! I was afraid that something horrible would happen during the surgery. I was also afraid that she could only replace the generator, and that we would have to live knowing that the ventricular leads could fail at any point. Both were horrible scenarios, that I no longer have to fear! Thank God!

Now she has to get through recovery. But, hopefully that is going to be easier since she didn't have a sternotomy. 

I'll update again after we see one of her EPs. 

4:15pm. We still haven't seen EP. But she is settled in the CICU and the attending doctor is one that we've had before and I love. It was so great to see her! 

Harlie was very upset when we came in. She signed that she hurt and was scared. They were trying to get an EKG and a chest x-ray, plus a bunch of other stuff. So, she was just really agitated. She said to Tom, can they give me something to help me relax? So they did. She's on pain meds, too. 

She's finally resting some, but she has her nurse hopping. Whew! 

I think I'm going to wrap this one up here. Thank you for all the love and prayers! We are so grateful! 

xo, 

Christy 

Surgical Consult

On Tuesday (June 30), we had a meeting with one of the surgeons that will be doing Harlie's surgery on Wednesday. As of this writing, I'm not even sure I'm going to post this one. I am just writing to help myself process. 

Harlie's EPs (electrophysiologists/pacemaker docs) want the surgeons to replace:

1. Her pacemaker generator (located in her abdomen)

2. Her ventricular leads (they are 19 years old and are "failing")

3. Her atrial leads (they are 14/15 years old and appear to be working fine). 

The generator and the ventricular leads must be done now. However, since they are going to all the trouble to have this surgery (and there is a lot of effort) they are thinking she might as well replace the atrial leads because they are bound to fail at some point in the future. What kind of time, I have no idea. 

Here are the basic challenges in Harlie's case:

• Her heart anatomy is unique and stuff is not where it is supposed to be.
• Access to veins, etc. for life saving reasons is limited or difficult (maybe even impossible).
• Her heart is adhered to her chest wall/underside of her sternum.
• Scar tissue can easily tear and bleed

I'm going to break it down into several potential outcomes. 

Outcome A: The surgeons can successfully replace all three things - generator, ventricular leads and atrial leads. 

Outcome B: The surgeons replace #1, the generator and #2, the ventricular leads. 

Outcome C: The surgeons can only replace #1, the generator. 

Outcome A is the best possible outcome. Unfortunately, this is the most unlikely outcome. Explaining why is difficult. Mainly because understanding it myself is difficult. For one, the surgeon's first language is not English. She spoke very well, but there were times where it was very difficult to understand the subject material. It doesn't help that this is complex material.

In order to do #3, replace her atrial leads, they have to do a full sternotomy. That is when they cut the sternum to open the chest. However, Harlie's heart is adhered to her chest wall/underside of her sternum with scar tissue. It is my understanding (at this time) that in a typical open chest situation - they would cut the sternum, then put the patient on heart bypass (a machine that does the work of the heart so the heart can be operated on). 

But, that is too risky with her heart being stuck to the underside of her sternum (because they could cut her heart). I do not know if that means the answer is to put the patient on heart bypass first. That way, if they cut the heart, it is less life threatening because she is already on the bypass machine? Let's just go with that for now. 

However, it sounded like it will be more difficult to get Harlie on the bypass machine because of limited access. This was another part that was hard to understand. Harlie's femoral veins are scarred down and cannot be accessed. When Harlie had her first four open heart surgeries, that wasn't the case. They became scarred down years later after several more heart caths. I know they have gotten access through her neck (for heart caths), but I don't know if that is enough for bypass. 

So, I believe she said she does not want to have to put her on bypass (but I could be wrong about this, since this was the part that was difficult to understand). Oh, also she said that because of the adhesion to her chest wall, any small manipulation can cause the scar tissue to tear and then bleed. This can become a major problem and it is unpredictable. 

So, I believe she said she does not want to do a full sternotomy. She wants to cut the lower part of her sternum (or right below her sternum) then make a cut over to the left (creating an L shape/flap) and she wants to see what she can see/do from that area. She said she will not do more than she is comfortable doing. Keep in mind that we only spoke to one of the two surgeons. The other surgeon is the chief of surgery, but we haven't met him yet. The surgeon we met with said she trained under Dr. Jonas (the surgeon who did all of Harlie's heart surgeries and has retired). 

Every time she has had heart surgery, the surgeons have given us a risk percentage. There is no way I could find it now, but I remember Dr. Jonas writing it down on a piece of paper that he had drawn her heart on with his surgical plan. He said her risk was higher than normal and I believe it was 5-7% or something like that. But, I'm not entirely sure. I think this is the risk of having major complications or death as a result of the surgery. 

Anyway, her risk percentage this time is way higher than normal - 15-20%! At first, these numbers didn't seem very large to me. Honestly, I was like, okay, fine. But, as I am learning (and Googling), when it comes to heart surgery - anything over 15% is extremely risky. In fact, she even said, the easiest/safest thing would be to just replace the generator. While I understand that from a her perspective, that would not be the best thing for Harlie's longevity. I mean, her heart won't beat if her ventricular leads stop working. So, I felt the need to tell the surgeon that it is difficult to live every single day afraid that one of the components of her pacemaker might fail and that we would lose her.  

At this point, we still have questions. 

Like, what does it look like (for the future) if she can only replace the generator and ventricular leads?

What does it look like if she can only replace the generator?

Sadly, I don't know that they know the answers. We asked her, but she said that she didn't know and those are questions for her EP doc. So, during our meeting, she texted Harlie's EP and he told her that he would call us the next day (Wednesday). She said we would speak again on Tuesday sometime during her pre-op appointments. This was a zoom meeting and Tom was at his work and I was home with Harlie. Harlie was in the room with me during the entire call. I always make the information available to her if she wants to be a part of her appointments. She was on her tablet and her tablet bluetooths to her hearing aid, so I'm guessing she didn't hear anything. Anyway, after we ended the call, I sat in complete shock and slowly closed my laptop. Then Harlie came up behind me (she paid enough attention to know I was done) and in her sweet little voice she said, "So, how'd it go?" So, I looked at her and lied. I said, "It went fine, sweetheart." 

Then, that night I had that documentary screening and panel Q&A after. Oh, my brain was having a hard time. That took some kind of energy I cannot describe. Needless to say, I'm glad that is over. As I've eluded to before (I might have even said it outright) sharing the most painful parts of your life is really difficult. It means you make yourself vulnerable and that is terrifying. Will people handle this vulnerability with care? By sharing the documentary - that means people are either going to watch it - or they aren't. And that is scary by itself. Is seeing it important enough to someone? If you saw it, did you learn anything? Do you see me (or other parents of medically fragile children) differently? All of this to say a huge thank you to those of you who reached out and truly handled all that with care. I appreciate it more than you know. 

Anyway, back to Harlie - I knew she was hardly an easy case. But, I really did not expect there to be so many complications and so much uncertainty. Uncertainty of this level when you have 19+ years of medical trauma is a really bad combination. I am STRUGGLING. Sometimes I have to focus on just getting through minutes. Sometimes I feel such a strong need to cry. Sometimes my stomach hurts so bad. Normally, I am the one who is doing the catastrophic thinking and I'm almost making outcomes up that aren't likely at all. And I usually have Tom to tell me that and I have his positivity to lean back on or to bring me back to reality. But, I'm not doing that this time. And Tom is just as scared as I am. 

Obviously, we sort of "knew" (as much as one can predict the future) her heart could be more of a problem one day. That gets lost with all the other challenges she has. But, her heart disease qualified her to Make-A-Wish for a reason. So, even though we've known this - we are not ready to lose her. We will never be ready to lose her. 

We are trying to hope for the best. I mean, maybe everything will go great and they will be able to complete outcome A and we can put all this behind us for another few years. 

But, the back and forth - I'm afraid - it'll be fine - what if they can't - but maybe they can - I gotta do the laundry - I'm afraid - darn it, forgot about the laundry - it'll be fine - gotta walk the dogs - what if they can't - gotta go to work - but maybe they can - what would we do if... can't think of that right now - gotta get to work - it'll be fine - what if it isn't - it'll be fine, on repeat for all the hours I'm awake. Then it goes into my dreams in weird ways as dreams often are. 

So, that's where I am right now. Life is not fun right now. I'm blogging all of this because it helps me process. It helps me clearly see the holes in my understanding so I am prepared when we get in front of her doctors. I hope it helps those who know us to understand us better. I also hopes it changes your expectations - like in lowers them. Haha. I'm doing the best I can to get through this, but it comes at a cost. My brain just doesn't work like it used to. For example, we were out a few weeks ago and saw someone we knew but haven't seen in a long time. I could not remember her name. It wasn't that she wasn't important - it had nothing to do with her at all. It was that my brain is too busy surviving. 

I was in my therapy session a couple of weeks ago and she told me that when I feel danger, my thinking brain goes off line and my brain searches for safety. Of course no one can see this. I was trying to find a way to express my feelings. Like people look at me and see Christy - they think she is totally fine. She's done this so many times before - she has this! This is just another surgery and that's just what they do - no biggie. You might even talk to me and still not see what is different. So, they treat me like I'm just my normal self - the same person I've been. 

But, today's Christy has been through an especially rough few months. Today's Christy is not the same as the old Christy. Thus, I don't want to be treated as the old Christy. Basically, I want to be treated like an adorable wounded animal. When people see me - I want to hear awe, look at you, here's some water (or wine) and then I want to be helped out of the middle of the road so I don't get run over. Is that too much to ask? Haha! I will have to be really brave to post this one. I'm only writing it right now to help me right now. Although, I'm betting there are plenty of people who felt this way when they were going through a particularly rough time. So, as I have to tell myself - my feelings are appropriate for what I'm going through. I am not crazy. 

On to better things, Tom's mom came to visit this week to spend time with Harlie before her surgery. It is always so great having her here. This was the first time we have used Murphy's room as the official guest room. Tom and I got it all cleaned up and ready for her last week. We still have to paint and decorate, but I'm not sure when we'll get to that. Anyway, Murphy was off on Wednesday, so he came over and spent the day with us. We went to see the Monsters vs. Minions movie (funny and cute). Then we had dinner. The next day Murphy met Mary Ann and Harlie for lunch, then he went to work and Mary Ann took Harlie to see Super Girl and then Toy Story 5. Sadly, she had to go home on Friday. 

On Friday I took the dogs to the vet to have their nails clipped. Mabel has gotten so bad that I have to drug her before I take her. She is crazy! But, they are still so cute and funny to me. I mean, just look at them!

Well, that's it for this one.

July 8 

Overall, I think we are feeling a tad bit better after chatting with her docs yesterday during preop. I thought about just editing what i already wrote, but that was too hard. So, here goes...

Bypass issue: she explained that in order to be put on bypass you have to have a full circuit? So you need an in and an out. She does not think she can access the venous return? But, she really won't know until she gets in there. 

Lead issues: The ventricular leads must be replaced. We did not ask what it looks like if she can't replace them. I did not want to hear the answer. 

They said it won't be the end of the world if she cannot replace the atrial lines. They have been known to last a lot longer than the ventricular leads. This was great to hear! We are going to hold on to that. That means there are two positive outcomes, which is a huge improvement. 

They also explained that they can't just stick the leads anywhere. An EP will be in the OR and will be testing the leads as she places them. So, now I'm worried that there won't be enough spots available. So, I got less worried there for a minute, but now I'm back to full worried. Darn it!

Ok, I'm going to end this one now and start a new one with more about yesterday and today.

Thank you for reading, caring and loving us. We appreciate it more than you know! 

Much love,

Christy xo