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