Post-Op Day 15

I am struggling a bit tonight.

Today her blood pressure stayed low all day. So they had to put her on Dopamine. They tried to wean her down several times throughout the day, but they couldn't. After checking a couple of things, they told me they were concerned she could have an infection. She has plenty of sources. So they had to get blood and respiratory cultures. And they put her on Vancomycin and Clindamycin while we wait for the results. 

Wound care came by to change her stoma dressing. I don't know if I mentioned that the wound care nurse is the same nurse that trained me on Harlie's trach care when Harlie was just six weeks old. She left trach care and moved to wound care. But that's just a bonus for us since Harlie's wound is her trach site. 

While they had the old dressing off, I took a look at her wound. It is a very large open hole. Where there is supposed to be tissue and skin, there just isn't. I suppose the skin just eroded. Stitching it closed isn't an option.

The wound is 1.5 cm wide, about 1.5 cm long (harder to measure that because the trach covers it) and 2 cm deep. You can see the cannula of the trach (the tube that goes into her trachea) which you are never supposed to see. It totally makes sense that the trach could come out with very little movement. 

Tomorrow at 9am, she is supposed to go into the OR for her ENT to take a good look at how things are healing. What we all want is for things to be good enough that her trach can be secure, so that they can pull the ET tube out. 

Honestly, I don't think it looks good enough for that.  It is hard to believe that her trach is secure enough that they could pull out the back up airway that has saved her life twice now. We will just have to see what he says tomorrow.

I talk to Harlie throughout each day. But, today, I just couldn't. I tried. But as I was telling her about the boys, I started to cry. This is just so hard. 

She's received some great gifts.
Thank you!

I miss her so, so much. I can't believe it has been over two weeks since I've seen her goofy smile.

And it has been exactly seven months today since she was truly well. I took this picture while we were waiting for them to take her into the OR in Boston, on August 8th.

And this one was taken two weeks before our trip to Boston.

I just miss her more than words can say. And I wish her life could be less painful and unusual. She only missed like eight days of school last year. And she hasn't been able to go to even one day this year.

Tom is coming early tomorrow morning and will stay for the weekend. Murphy had the first night of his school musical tonight. Tom and a lot of our family and friends went to support him, which is amazing. Same for Cooper, too. Some of my family went to Cooper's tonight, and will go to Murphy's tomorrow and/or Saturday night, so they can see both. Thank you!!!

Thank you, as always, for all the love you are sharing . We have received some wonderful, thoughtful gifts, cards and kind messages and I appreciate every single one. Truly.

Much love,
Christy xo

Post-Op Day 14

Hi. Sorry I didn't post yesterday. I was just too tired. 

My brain is working on a different level right now, and it is much harder than you would think for me to write anything at all. Just responding to texts and messages is very difficult. So, I am sorry if I haven't responded to you.

Harlie is hanging in. This morning when I walked into her room, I did my normal thing. I said hello to her nurses, and put my stuff down. Then went to talk to Harlie. I held her hand and gave her a kiss on her head. Then, turned on the music and got myself settled. I talked on the phone with Tom and worked on my latest puzzle. After about an hour, her nurse came in and said that parents always wonder if their children know they are there. She said she believes they do. Then she said that before I arrived, they were about to give her more sedation meds because her blood pressure was hanging out too high. But, since I arrived her blood pressure came down, and they didn't have to give her more.

I can't tell you how much that meant to me. It is so hard to watch my sweet girl fighting so hard, and not be able to do anything for her. I hope she does know that I'm right here and that she's not alone.

The plan is still to take her into the OR on Friday to see how her airway looks. That will be day 16. Hopefully, her skin will have healed enough that they can wake her up and get her off some of these meds. Friday still feels so far away.

Every day is a constant juggling act with her blood pressure, pain meds, sedation, paralytic, vent settings, etc. It is stressful.

They get four people to help change her diaper (they've pulled both her Foley catheter and rectal tube to reduce infection risks) or move her in any way.  I hold my breath the entire time. 

I feel ike I'm stuck in a haunted house. Everywhere I turn, something scares me. My insides are so tight and it feels like I'm barely breathing. And I get waves of nausea.

Yesterday, during rounds they said something was growing in her respiratory cultures. So they need to gown up in her room, to avoid spreading it to other patients. They called Infectious Disease (ID) in for a consult.

Today, ID came in to talk with me. He was telling me about this growth, and said it is very unusual. So, I asked him what it is called. He told me he can't pronounce it. This is what it is...

Alcaligenes Xylosoxidans

See? Haunted house. From hell.

He joked that it looks like someone sneezed and hit a bunch of keys on the keyboard.

Anyway, apparently, it is pretty resistant to medicines. Haunted house. They see it mostly in immunocompromised patients receiving chemotherapy. But, she doesn't have a high white blood cell count, so that's good. They are thinking she may be colonized with it. That just means that it lives in her lungs, not doing anything for now.  So, it feels like a ticking time bomb to me.

Opthamology comes in every day to check her eyes. Unfortunately, they want her eyes taped shut. The nurses were using gauze to cover her eyes and then taped that on. Her eyelids and cheeks were getting so irritated. But, they said that her eyes open underneath the gauze, so they can't do that anymore. Ugh. And today she said that her eye balls are red and fluid overloaded. Ugh. That sounds totally gross.  Her nurse said she was positive a liter (meaning that more is going in than coming out).

Every time someone messes with Harlie, she gets mad (or she's in pain) and her blood pressure goes up. So, they give her meds. They wouldnt let the opthamologist examine her until they gave her something first. I love how protective nurses are.

Here are some pictures from the past couple of days.

Sweet girl!

Trying to find tape that doesn't bother her skin. 

Me and Kristie (Tom's sister).

Me and Maggie (my niece).

The latest puzzle.
A 1,000 piece Frank Lloyd Wright design. 

1,000 piece vintage game puzzle

I have put together (with the help of visitors and nurses) six puzzles so far. Right now, they are pretty good therapy. They help the time pass.

My sister is here today. She brought up a wonderful basket of goodies from our work, KaneJeffries, LLP. Love them!

Did I mention that I changed rooms at the RMH? They had no repair date in sight to fix the hot water in my old room. So, another room opened up and I moved. It has two twin beds. But, at this point, not having to schlep my stuff back and forth to a community bathroom, trumps the bed situation. And I must say, I'm glad I moved. It is better to have a working shower for sure.

Last night, Maggie took me to dinner before taking me back to the RMH. Driving around is so stressful. I don't know how people deal with parking around here. Anyway, traffic was crazy and as we got to the restaurant I was thinking, "Ugh, where are we going to park?" Then, as we were turning the corner, someone pulled out of a spot - right in front of the restaurant!!!  So, that made my day. Haha, it is the little things...

Okay, that's it for now.

Thank you so much for your continued love and support!! I promise you, it helps me stay strong and feel loved every day.

Much love,
Christy xo

Post-Op Day 12

Hi. Just want to let you know that all is the same. No changes today.

Sally came up to visit again. She is determined to make my life better in any way possible. ☺ Love her.

Also, Tom's sister, Kristie drove all the way down from Erie, PA today to visit! Love her, too! She will go back home tomorrow.

They had to move her today to look at her back and sacral area. Wound care and ENT came for all that. I could barely breathe the whole time they were doing stuff.

Well, that's all I have the energy for today. It is so late.

Thanks for all the love. Can't say it enough.

Much love,
Christy xo

Post-Op Day 11, Got to see the boys.

Today we had a few visitors. 

Mike came over in the morning. We had breakfast at the hospital cafeteria. Then we hung out in Harlie's room. 

Mary Ann (Tom's mom) brought the boys up on the train. So, Tom and Mike left to go get them from the train station. 

We are still dealing with what happened yesterday, obviously. And I struggled with the decision on whether or not to let them come up. Honestly, I was worried I would cry or just not be strong enough around them. But, when you know that you aren't guaranteed tomorrow, it makes you think differently. So, we decided to stick with our plans for her to bring them. 

Tom asked them if they wanted to see her, and they said yes. Oddly, I was surprised, but proud that they wanted to. They did great and took the situation like champs. Well, like pros, I guess I should say. Makes me sad when I realize that this isn't as unusual as it totally should be. Our life seems surreal when I think about it. Like this family picture...

Anyway, we all went to lunch together. Then we went back to the hospital to drop Mike off to get his car.

Then the five of us went to the Mall, and went into the Building Museum, where they were flying model planes and birds. The birds were so cool. 

We drove around for a bit, but it was hard for me to enjoy myself. It is like I'm fearing disaster is around every corner. I was so nervous in traffic, totally afraid we were going to get in an accident, or hit a pedestrian. And I totally trust Tom's driving! It was exhausting. 

So we went back to the hospital. You can only have three people bedside, so we just took turns hanging out in her room and the CICU waiting room. 

We had another visitor, Rick. He came to the hospital while we were driving around, so he left. When Tom told him we were on our way back, he turned around and came back. 

Then we went and had dinner together. Cooper has a school musical performance on Thursday night that I'm going to miss. And then Murphy is in his school's musical this coming Thursday, Friday and Saturday nights. Tom has a plan to get me home to see the Satuday show. It is really hard to leave the hospital and be two miles away. It feels completely overwhelming to think about being hours away from her. Now that makes me think about, and appreciate how difficult it must be for Tom to leave us during the week. No one has it easy in this situation. 

Tom dropped me off at the RMH and then they left to go home. 

I am exhausted but I didn't want to get behind in my posts. And I didn't want anyone to worry if I didn't post something today. 

Oh, I forgot to mention that yesterday we had some visitors a few hours after what happened yesterday. I didn't take any pictures, just wasn't thinking about it. But one of Harlie's home health nurses, Caylee and her mom came to visit. They happened to be in the area, so that worked out well. Caylee brought me a fun 1,000 piece puzzle to work on, so that was awesome. 

We have some amazing friends, and they got together and reserved us a room in a very nice hotel for Saturday night. We were so looking forward to it and a nice dinner. But, after what happened, we just couldn't be that far away from the hospital. So, we had to cancel our reservations. So, we stayed late at the hospital. And in walked Paul with a surprise visit! 

We went to a restaurant just a few blocks from the RMH. Even though I didn't think I was up for talking or doing anything that night, I managed to laugh a little, which is good. 

Although I was jumpy as hell. My phone rang and I about jumped out of my seat. I'm just so afraid the hospital is going to call.  

Overall it was a quiet day for Harlie. They put some special boots on her today to keep her foot from developing foot drop, I think is what she said. It is so hard to see so little of her face. 

I have to wrap this up because I am just too tired to write more. But, I want to thank every single one of you who have thought about us, prayed, shared my blog, commented on my blog or Facebook, visited, written us messages, emails, texts, etc. There are so many comments on Facebook that I can't possibly respond to all of them. 

We know this is hard stuff to read and allow into your heart. Thank you for being up to the challenge. Thank you for having the courage to say something, even when you don't know what to say. I just can't tell you how much it means to us to have such an amazing support network. You are helping us get through this. And I just can't thank you enough. 

Much love, 

Christy xo

Post-Op Day 10 - Scary Day

I don't even know where to start. They rounded this morning and we were talking about how she was holding steady and we all felt like she was in a good place. I just said I wasn't as fearful as I was two days ago.

An hour later, that changed in an instant. They rolled her to her side to change her diaper, and despite the three people that were there, one of which was holding her trach secure, it came out.

Even though they were quick to bag her via her back up airway in her nose, she crashed. Lauren, her nurse, hit the code button, and everyone came running. Oxygen saturations were nothing, blood pressure tanked, gave several doses of Epinephrine and a heart surgeon did chest compressions.

Scariest minutes of our lives. 

We watched her sats go down to 15, and then nothing. Erin (a fabulous nurse) called out, "It has been one minute since your last dose of Epi. It has been two minutes since your last dose of Epi."

Jay (the attending, who I really like) did great and called out instructions to the team. ENT came running and she was able to get a new trach in.

It was terrifying and awful and worse than I could ever describe. Watching your child get chest compressions, hearing the instructions, and seeing the faces of those trying to save her life... I just can't.

Erin came over and gave me a hug and I told her she was wonderful for doing what she does. All of them are. For real.

I am so thankful that Tom was here, with me.  So, so thankful we could be together through that.

The problem is that her stoma has opened up way too much and is just not healing fast enough. They were trying to avoid more sutures, as it could actually cause more damage. But, as has been the problem, we are constantly forced into having no choice. So, she stitched the area above her trach closed and now we hope and pray that it stays put, and heals well.

They are now saying absolutely NO movement whatsoever, for at least three days. So, they are going to put in a Foley catheter and they are considering a rectal tube. But, the rectal tube has it's risks with bleeding etc. So, they are weighing those issues now.

They have now decided to put the tube in. I pray that goes well and doesn't become a disaster.

She is now "stable" again and the room is calmer.

Of course I just got up to check on her and her heart rate is 150 (even though she is paced at 120), and her blood pressure is up and alarming. They are suctioning her now, and I don't know how I'm going to do this. Everything feels so scary. It all feels so life or death.

And how can I trust the calm moments, when they can transform to chaos in a second? Even "stable" is precarious. Now her nurse looks worried because she is bleeding a lot from her nose.

And Electrophysiology (EP) is coming to check out her pacemaker. Something is weird about her pacing. And she has a fever. They are also going to do an EEG (check her brain waves) to make sure she's not having seizures, or something like that.

I don't want to write anymore right now.

Please pray for her, her caregivers and us. This is so fucking hard. That can't be over stated.

Thank you for your thoughts and prayers. We have such an amazing support group. Just can't thank our loved ones enough.

Much love to you all,
Christy xoxo

Post-Op Day 9

Hi. Harlie is holding steady. Here's how our sweet girl looks today...

Not many people can pull off looking this cute in an ICU.

Her trach/stoma wound care is proving to be a challenge. The weight of the ventilator tubing does NOT help. ENT and wound care come by several times a day to check on her healing.

She requires constant care. And nothing is straight forward. It is exhausting to watch. And it is hard to think of any kind of life outside this room.

So, in case you were curious, I am still without hot water at the RMH. Tom told me to suggest to them that a plumber take the parts out of the downstairs shower, and use them for mine. So, I did. She said she thought it was a bigger problem (I'm sure it is), but she would ask. She also said that IF they couldnt find the parts and have to special order them  it could take a month. Really? It has been a week, if you haven't found them by now, just replace the whole thing with a new one. Sometimes I don't know why I'm not crazier. I hear all the time that people don't know how I do it. Well, quite frankly, I don't know how I do it, either. I just know that being mad doesn't get me anything.

Anyway, it is super windy. But, I am stubborn, and chose to walk through it anyway. I was terrified I was going to get hit by flying debris (which wouldn't surprise me in the least) so I walked constantly looking around me. I'm sure I looked crazy to passers by.

Sadly, the Starbucks was closed due to a power outage.

And then I came across a fallen tree across Michigan Avenue.

Tom is on his way up, so that's good.

So, that's all I have for today. As always, thank you for your continued love and support. We appreciate it more than you know.

Much love,
Christy xo

Post-Op Day 8, Trach Change Day

Hi! Well, today was a better day than yesterday, for both Harlie and me.

They were able to get some fluid off her, so she seemed a little less puffy.

My friend Sally came again today to hang out, which was great.

Last night (Wednesday) my brother, Bruce, came to visit. Forgot to get pictures, darn it! He took me out to dinner, and then took me back to the RMH. Before we left the hospital, I met the night nurse and she saw that I was working on a puzzle. She said she loves puzzles too, and would call her roommate (who works at the hospital, too) and ask her to bring me one to work on when she came to work in the morning. And she did...

And our friend, Mike, surprised me this afternoon.

And Dr. Preciado came to do her trach change.

That went fine. They were able to put in a longer trach without any problem. He explained that he made a vertical incision for her new trach site and that incision has gotten longer. In other words, the stoma (hole) has opened too much. This probably made it easier for the trach to come out the other day. And the trach was cuffed at the time. 

The cuff is a balloon on the cannula, that when inflated, fills the gap between the trach tube and trachea. It is very hard to ventilate a patient when there is air escaping around the trach and not going into the lungs. 

So, I'm guessing the opening got pretty big. 

Anyway, the stoma is not healing great. So, they are going to do "wet to dry" dressing changes in that area. Basically, they are going to pack saline soaked gauze into the exposed hole around the trach to promote healing. 

He also said that based on how it looks today, she needs more time to heal with the ET tube in her nose as a back up airway, and as a stent. So, instead of Tuesday, they are shooting for Friday, March 9th, which will be Post-Op Day 16! He also said that they might do everything bedside instead of taking her to the OR. Transporting her to the OR will not be easy given everything that will have to travel with her. So, he's going to have to think over what they gain/lose by being in the OR vs. bedside. 

They are going to do their best to keep her comfortable on the lowest doses of sedation/paralytics possible. They are hoping that she can be kept more sedated vs. paralyzed. So, the plan for today was to cut her paralytics in half and see how she does. This is a delicate balance. I think in simplest terms, sedation keeps her asleep and the paralytics are a muscle relaxer that prevents her from being able to move. And to make things more complicated, the doses have to increase as she gets used to them. 

Not moving for 16 days will be very hard on her body. In Boston, she was on paralytics for 8 days, and it took a toll on her. She was so weak for a long time after. But, her moving her head and neck before her airway can heal is not an option. So, they have to do the best they can at balancing everything until then. 

My friend, Lindsay, came up to visit today, too. 

We hung out for a couple of hours, and then the three of us went out to dinner. 

I felt a little less sad today than yesterday. I guess I was probably more scared yesterday than anything else.  It seems that we are one misstep from devastation, and that's just really hard. And watching her nurses work their butts off taking care of her everyday is hard, too.

But, Sally, Mike and Lindsay all did a great job keeping me distracted today. And Tom will come up tomorrow after work, so that's good. 

Well, it is late and I need to get some sleep. Thank you all for your continued love and support.

Much love,
Christy xoxo