Hi. This morning Tom took an Uber to the airport to go pick up our rental minivan. I walked to the hospital. Harlie was asleep when I got here. The nurse came in and said, "Has anyone talked to you yet?" Um, no. That sounds a bit ominous. She went on to tell me that Harlie had an 18-beat of ventricular tachycardia at 3:30am. They did an EKG. They didn't call us because they didn't want to wake us up to tell us that she was "fine." But, electrophysiology (EP/pacemaker docs) need to weigh in before they will discharge her. Also, her blood pressure has been lower than her normally already low blood pressures since the vtach event.
In the grand scope of Harlie, her heart has really been the least of her problems. We have been very thankful, since we've really had to focus on other things. But, we know that her heart is not "fine" long term. We've always known that one day her heart will become more of an issue that we will have to face.
That's kind of happened with her pacemaker wire going bad. She got her new pacemaker generator in May of 2022. She got her first pacemaker generator at 5 years old. So, that generator lasted about 10 years. The generator is the battery, basically. The more the pacemaker is used, the more it uses the battery, the faster it gets drained. I think they told me that based on her current usage, she has about 4 more years of battery. She's had this battery for 1.5 years. I don't think the wire is going to last 4 more years, based on what they've been telling me. So, they will replace the wires and the generator next time. Ugh. Next time.
Anyway, all this to say that I am always kind of anticipating the beginning of her heart problems. Is this it? Or not? UGH! Not to mention the slap in the face we are feeling walking in here thinking we would be on the road by noon, to find out we have this whole new issue.
An EP resident just came by and said that we are waiting for one the docs in charge to come check out her pacemaker. He said that they have a lot of patients. 😑 No problem. We just have about a 10 hour drive in front of us.
Still waiting...
11:30am, Plastics just came by and said they want a CT scan. They said it can be done outpatient. But, that is way easier said than done. That is a mountain that I don't want to climb. It would be way easier to just get it done now, while we are waiting anyway. Honestly, things aren't looking good for discharge today.
We currently have no hotel room for tonight. We have a rental car that is due in Richmond tomorrow morning. There are no flights available tomorrow. I am worried about Harlie. Cooper has his first homecoming dance tomorrow night. Harlie is oozing a little from her incisions and plastics is like, "looks good, a little oozing is normal." But, my brain is remembering that we left here one time when all looked good and she bled like crazy after we left. I don't feel any comfort and my stomach is in knots and I'm waiting for the other shoe to drop. We don't even know if they will let her go home today, regardless.
Harlie just told me that her vision is blurry. Ugh.
We can extend the car, I believe. We'll have to find a hotel room for tonight. Or, if they will do a late discharge, we get on the road late this afternoon. I don't know. I'll update when I know more.
1:30pm, Just had her CT scan. EP docs came and adjusted her pacemaker. They changed her low heart rate from 60 to 70. So, her pacemaker will keep her from going below 70 now. I think we just need cardiology to let us know if we can resume one of her heart meds and if they will let us go home. If they say we can go, we are just going to get on the road asap.
Deep breaths.... today has been crazy. I've seen a lot of conversations happening outside her door. I am not very forceful, but I made myself go out there and I asked if they were talking about Harlie. When they said yes, I asked if I could be helpful.
Here's a basic summary...
They should've called us to let us know that there was an event that could potentially alter discharge plans. That would have avoided us giving up our hotel room and incurring costs by ubering to the airport and committing to the rental car (and now having to store/park it, which is super expensive). We used points to rent it for 24 hours - not realizing that we would have it for DAYS.
When we come into a hospital for one specialty (Plastics) it has been difficult to manage who is the lead, where she goes in the hospital, etc. For example, when we go to Children's National in DC, she goes to the cardiac unit - and they make whatever specialty come to the cardiac unit to see her. They "protect" their cardiac kids by wanting to be responsible for them. At other hospitals, it doesn't work like that. In the past (like every time, which has been a lot considering we've been coming here for 11 years now) since she enters under Plastics, they want to send her to the Medical/surgical unit. Makes sense, except those nurses and doctors don't understand her heart issues. For example, she has a Fontan circulation, and she shouldn't ever get dehydrated. A med/surgical nurse probably has no idea! Plus, the monitors show her heart craziness, and they don't like it. So the nurses don't like it. Then they spend a lot of time on the phone with the cardiac unit, until everyone gets over it, then they transfer her to the cardiac unit. I know this because it has literally happened every single time. Seems like a bunch of unnecessary energy, so I try to tell them this every time we come here. But, they look at me like I'm freaking crazy.
Even once we are in the cardiac unit (for non cardiac issues) they treat her like - oh, no big deal, she's not here for cardiac issues - so move along to more critical patients. It leaves me feeling like we don't belong anywhere. She is a complex patient - and she's being treated like she was here for something routine, which can be dangerous.
We are on Day freaking 3 - and today I asked the nurse and a person I had never seen before if they were discussing Harlie. Turns out this doctor had no idea we were here! Um, we weren't hiding. If she had known, she would've come to see us before. Well, we are actually IN a cardiac unit how would I know that no one knew we were here? WTH? By the way, WHO THE HELL ROUNDED ON HER YESTERDAY, THEN?!
So, apparently she is IN the cardiac unit, but under Plastics. Um, okay, that's not unusual. However, during rounds yesterday there was no one from plastics, so what the hell? How was I supposed to know that there was no one in cardiology on her service?
I'm pretty sure that despite the fact I was told that they were keeping track of her Ins and Outs, that she has numerous working IVs, and that she has a g-tube, they let her get dehydrated. The glorious thing about a g-tube is that we have the power to control that. Dehydration would explain her low blood pressures. Plus, she hasn't been herself at all - hard to tell exact cause(s) since she's miserable from surgery, in pain, on Oxy, and in general over all of this. But, if she's dehydrated, she would feel terrible, too. Today I took her to the bathroom and in my opinion her urine looked too dark - so I tubed her some water. That made me ask her nurse if they have been giving her her water flushes (four ounces of water, three times per day). Nope. They have not been giving her water. How is that possible? How do you let a cardiac patient not get any fluids?
Finally, late in the afternoon, we were told that they aren't comfortable sending her home until they figure out this lower than normal blood pressure. They held one of her heart medications that she's been on her whole life. You can't just do that and be like, okay, new normal - without some checks. Plus, at 3pm she refused her tube feeding and that is a major red flag - not tolerating feeds will buy you more time in a hospital for sure. So, she said they want to keep her at least another 24-48 hours!
We don't want to push Harlie out of the hospital if she isn't ready to leave. Trust me. However, a little communication would've been way better. I just feel like we are vital members of her team, and we can't help if we think that cardiology is involved when they actually aren't. I try to think of ways that I can avoid this happening in the future and then I remember that I don't work here!
Also, we don't understand how she's been trending lower than they are comfortable with blood pressures and it took ALL day for them to start IV fluids. All day!!! At this point, we HOPE that she was dehydrated, because that could be an easy fix. So, cross your fingers.
A friend of ours came to our rescue and gave us her hotel points and made us reservations at the Courtyard Marriot for the next two nights. Thank God. Seriously, we can't that you enough! She's seriously the best.
Tom started thinking through logistics and he said it would be our luck to turn in this minivan, to have to go rent one on Sunday, and since it is the weekend, they wouldn't have any available. This has happened to us in the past. We have a total memory of trying to find one the three of us could fit in. So, he said he was afraid to let it go. We looked at flights again - and tickets were $1,000 per ticket! So, we are just going to keep the car. Our nurse today is awesome and she felt really bad over what happened today, so she called social work to come see if they could help. They gave us parking at the hospital for three days (to park all day today at a children's hospital - parking was $50!!). So, we are going to keep the rental at the hospital, and hope like hell that we get to leave Sunday.
At around 5pm we left to go check in to the hotel. We had our luggage in the van. In leaving the parking garage, Tom realized he left the parking ticket thing in his jacket, which was in Harlie's room, so the garage wouldn't let us out. Thank God there was no one behind us, so he backed up, out of the way and I jumped out and ran back up to her room to get it. I can't tell you how stressed we felt. All of it - the miscommunication, not being heard, worrying about Harlie, the boys, etc. I ran back to the car and we headed to the hotel. Poor Tom has to be a rock all the time and he was trying to get through hellacious traffic and pedestrian traffic, one way streets, etc., when he almost hit a pedestrian crossing in front of us. He was pissed and Tom said he was sorry - but that guy didn't care. Ugh! We just needed to turn things around and that felt totally impossible.
We checked in to our hotel, then drove back to the hospital parking garage. Parked it, then walked to dinner. Now we are back in her room. She is complaining of pain and her jaw looks more swollen to me. She also has more bleeding/oozing. Ugh.
It is now after 9pm and we need to get out of here and find a way to relax, regroup and get a better attitude. There's only so much we can control and being mad is not something I want to be longer than necessary. We have communicated our feelings here. Our nurse was so great today and she told me to keep doing what I'm doing. She will be back tomorrow, which is great.
Again, I don't have time to proofread, so I'm sorry if I repeated myself, made mistakes, whatever. Today was just a really hard day. But, we have had plenty of them and lived to tell the tale. We are going to miss Cooper going to homecoming and we are sad about that. I feel so bad that we can't be the parents we want to be to the boys sometimes. But, they are so good and they go with the flow and tells us they are fine and that they love us. 😊 Hopefully, tomorrow will be a better day and that Harlie will start to feel a little bit better and that all these kinks are worked out.
Thank you for all your support! Much love,
Christy xo
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