Update since being home from the hospital.

So, I started writing this a few weeks ago... I just couldn't get back to it.  So, here is a general update on what's been going on...

Wow.  We have been home from the hospital for two weeks (it's been three weeks now).  Things have been VERY busy.  

On April 25, Harlie was still bleeding. This was one day after leaving the hospital. Dr. Strauss came to our house and applied a pressure dressing. 

Throughout this whole bleeding ordeal, I was reminded of the Vegas Vacation movie.  Granted, it was pretty bad.  Nothing like Christmas Vacation, which is my favorite movie of all time. Anyway, there is a scene in Vegas Vacation that came to mind as we would stop the bleeding in one place, just to have her start bleeding in another. 

On Tuesday, April 27, I emailed her GI nurse practitioner.  I gave her an update on her feeding issues, etc.  I went for a walk and during my walk I got like 4 Harlie-related phone calls. I ended up walking several miles, all while talking on the phone with different providers. Sometimes I think there is no escape. Haha! Anyway, on the way home, an Edible Arrangement van passed me in my neighborhood. I thought, some lucky just got some fresh fruit. I've always wanted one of those. Then I got home and saw that the lucky was ME! Haha! Tom's mom and sisters sent it to me. It was so good!

Anyway, her GI NP emailed me back and ordered x-rays.  We took her that afternoon. 

That afternoon, Murphy had to be at work at 4pm and I had a parent track team meeting at Cooper's middle school at 5pm.  There was an issue with the orders and it took a long time to get that sorted out.  I told Murphy there was no way we were going to be back in time for me to take him to work.  So, he called a neighbor, and luckily she was able to take him. Coincidentally she was taking her daughter to skate practice right across the street from his work at the same time! I love it when things work out like that. 

When we finally got back to do the x-rays, we had a tech in training. This made taking her x-rays four times longer than it normally would take. I was watching the clock, hoping I could make it to the parent meeting without being late. Being patient in moments like that is really hard. 

We rushed home, I dropped off Harlie and Brandy and then I went to Cooper's middle school for the meeting.  Yes, I was like five minutes late. It is really hard to switch gears from all of Harlie's stuff to standing there in a group of parents hearing about details of practice, meets, how to get water to the kids during practice, etc. I just feel like I'm not wholly in one place. It makes me feel lonely sometimes. 

Wednesday, April 28th was Tom's birthday. I feel so bad for him. His birthdays have often been overshadowed by Harlie's medical stressors. We ended up going to our favorite restaurant and meeting some friends there. Since the bar is open again, we were able to do one of our favorite things and SIT AT THE BAR!  Haha!  

Earlier that day, I had a virtual meeting with Harlie's GI nurse practitioner. She put Harlie back on some meds to help her body process her feedings a little faster. She said her x-rays were fine, so that's good. But, we are back on the feeding pump and we have to feed her so slowly.  This is definitely a step backwards.  I'm sure it is only temporary, but it is showing a trend of a slower/more difficult recovery from a hospitalization that I don't like. If this was an isolated incident, it would be okay. I'm practically laughing at the thought of an isolated incident with her. Haha. Nope - she isn't done and we know there will be more surgeries/hospitalizations ahead. So, the thought that her body is having a harder time recovering is REALLY weighing on me. I'm trying to stay in the moment and not think too much in the future. But, it is hard.

One of the meds she put her on ended up being a little problematic getting filled. Apparently, Medicaid would only pay for NAME BRAND and not generic. WTH? So, they had to order it, which took two days! So frustrating when she could've had generic that same day. And, for some reason, they had to send it to a different pharmacy. Super. Of course, all of this meant that I had to take three different phone calls during Tom's birthday dinner. 

Thursday, April 29th we had an appointment with Harlie's local cardiologist. She had an echo and EKG. 

All looked good for her. He said her chest x-rays from Tuesday were fine. And he said that based on her most recent labs, her hemoglobin is low. That explains her being out of breath from a little activity (like walking up the stairs) and her low sats. He said that while her hemoglobin is within normal limits of a normal person, it is low for her since she is cyanotic. This is when it is frustrating/difficult for her - no one specialist knows enough about her. So, I said, do they (hematology) know that? He said he would make a note in her chart. I told him I hadn't heard from hematology yet and if we are waiting for them to do anything about her being anemic, I want to see them sooner rather than later. Also, we are holding her daily aspirin until we learn more about her bleeding issue. And cardiac kids take aspirin because it is supposed to help reduce the risk of stroke. So, I just really want to get all this sorted out so I can take that off my mind. Geez, I'm running out of room up there! So, he said he would request for them to call me to make an appointment. 

On Friday, April 30th, I went to the "new to me" pharmacy to get Harlie's name brand med. When the pharmacist gave it to me he told me to shake it up really good, as he was demonstrating how to shake it properly. Thank goodness, because I've never shaken anything before. Then he gave me three, 1ml syringes. He told me that the dose was 1.4mls, three times per day. He then told me that I would have to fill up one 1ml syringe and then fill another one up to .4.  For real. Is this where we are now? No one is assumed to have any intelligence? Luckily, I walked there, so I was able to walk off my annoyance at the interaction. 

I also went on ahead and called hematology (instead of waiting for them to call me) and got an appointment for Harlie for next Friday. 

On Saturday, we didn't have a nurse for Harlie. By her 9pm meds, I was really tired. And this isn't I need a good night's sleep tired - although that is true, too! It is a tired that goes deeper than that. It is hard to explain what it feels like to be pushed in every way - physically, mentally, emotionally. Anyway, I went into the cabinet to do her 9pm meds and all of a sudden I saw a bottle of meds that shouldn't have been there. I realized then that I had made a mistake - twice! - earlier that day. I gave Harlie the wrong medicine!

I thought I was giving her E, but instead, I gave her O. E helps her body process food, and O makes it slow down. E is a white medication and is in an entirely different bottle with a different cap and all. O is a red medication and the bottle is smaller. 

My only saving grace was that the dose for E is half of the dose of O. So, at least I didn't overdose a medication (I gave her half instead). But, I certainly didn't help her body process food. And, really, I was SO upset at myself. Really, you have no idea how much I beat myself up over this. How could I miss all the red flags that I had the wrong bottle?! How did it even get in my hand to begin with? I was talking to a nurse friend of mine and told her that if I worked at a hospital and did that, I would be fired. She said, yes, but you would never be allowed to work this many hours, either, and this is exactly why. This just proves why it is so important to have breaks and clearly, I need a few. 

On Sunday, May 2nd, Tom and I went for a hike. We did this trail called Fortune's Cove in Lovingston, VA. It was about five miles. It was the first time Tom and I have been away from Harlie since before her surgery. And, to be honest, we needed it. The past few weeks have been really hard. And the way Tom and I get through the hard stuff is by taking breaks and laughing. But, there have been so few breaks and this has been a really long stretch of having our sleep interrupted. And my constant worrying about Harlie is a total energy drag. So, I was a little worried that I wouldn't be able to power through a somewhat difficult hike. But, I did. And it was really good for me, and for us. After we were done we stopped at one of our favorite breweries in Charlottesville and got some food and drinks. It was great to just sit down and enjoy the outside together. 

On Monday, May 3rd, I went to work for the first time in three weeks. I was a little worried I didn't have the brain power for work. But, I think the medicine mistake over the weekend might have been a sign I need to work a different part of my brain. This also proves that work is easier than my home life. I have been joking about that for years. Now it is proven. Haha! 

I had to chuckle at my work. When I left before Harlie's surgery, I changed my email auto reply and said that I would be out for about a week and a half. When that didn't happen, I asked them to change my auto reply. Since none of us had any idea when I would return, my co-worker put "I will be out of the office for the foreseeable future. I will get back to you as soon as I can after I return." Haha! Those poor people who were asking stuff from me had no idea what to do with that. Luckily, I don't really do anything too time sensitive.  

On Tuesday night, May 4th, Harlie was really complaining of pain behind her right ear. Her nurse had already given her Tylenol and it wasn't helping her at all. I had to give her the stronger pain meds, which I had been able to put away for the last several days. I also thought that her right ear and the surrounding area looked more red than usual.  

It was 9:30pm. Based on Harlie's prior infection history (there's been a lot) I got pretty nervous. So, I sent a text to Dr. Strauss. He answered immediately. I told him what I thought, and he said he could see her the next morning at his office between 9-11am or he could stop at our house on his way home that evening. I really felt like it couldn't wait. Time is critical when it comes to infections - especially when there's metal in a surgical site. The next morning, Cooper had a 9am appointment and I was supposed to take my Mom to the hospital for her spinal fusion surgery at 11am. 

I really wanted to do all of it. I hate not being reliable to my Mom or my siblings. I hate not being able to do what my boys need. But, clearly, I HAD to take Harlie. So, I asked a friend to take Cooper to his appointment for me and I took Harlie at 9am, thinking I would be done and back in time to drop her off at home and then go get my Mom. 

Anyway, I took Harlie to see Dr. Strauss and he agreed that she needed to go back on antibiotics. He also stuck a pocket of blood that had developed, so he could send some blood away for culture. She's had three different pockets develop since she got home and two have come open on their own, leaking blood. I can't believe we are still dealing with this blood! 

I called my sister and gave her an update and she said she would take Mom for me. I got Harlie home and settled, and then I went to work for the afternoon. 

On Thursday, May 6th, Cooper had his first track meet. Well, his first was actually on Tuesday, but it got rained out before he could run his event. Anyway, Cooper did great. He had to run against 8th graders, so he was definitely the smallest kid in his event. But, he looked great running and he was giving it his all, so that's awesome. 

On Friday, Murphy had a doctor's appointment at 8:15am and Harlie had her hematology appointment at 11am.  So, it was a busy morning. 

As far as hematology goes, I'll quote the doctor, "It is complicated." Her numbers are confusing. She did say that there is a test she wants to run for something that they have recently found in kids with VACTERAL (which is one of Harlie's things). They found it in the last five years.  I'm not even going to talk/think about it until the test comes back. There is no point in me learning about this particular blood disorder if she doesn't have it. So, when I find out, I'll let you know. 

They got more labs and unfortunately, had to stick her twice. Ugh, her arms are so bruised and it was more difficult for them to find a good vein. The hematologist said she will have to come back on a Tuesday to do more labs and run more tests. Fridays are not good hematology days - they can't send off certain tests on Fridays. Apparently the scheduler didn't know that. Awesome. So, we'll go back on a Tuesday sometime in the near future. 

Also, side note, earlier that morning, Dr. Strauss sent me a text asking me how Harlie was doing. I told him there appeared to be no improvement since staring the antibiotics. I told him that we had hematology at the Children's Pavilion that morning and he said he would walk over and take a look at her. So, he did. He agreed that it looked no better, but it also didn't look worse, which is good. I was able to explain to him that based on my prior experience with her crazy post-op infections, I'm nervous. There was/is one particular memory which has been worrying me. 

I told him that years and years ago, when she had her post-op infection from her spinal fusion surgery and had to go into the OR at like 11pm (unplanned, obviously) the surgeon came out and said something like, thank goodness the infection didn't get to her hardware (screws) in her spine, because I would have had to take them out. 

Well, there's hardware in her jaw. What if the infection has gotten to the hardware there? So, I asked him if the same thought applies to her jaw. And he said, yes. So, we talked about a plan.

First, he put her on antibiotics and we hope that does the trick. 

IF it does not, then her wound will have to be opened and drained/cultured. The question then is where should that happen? Here in Richmond, or in Boston? He said he would feel comfortable doing it here and reporting to her surgeon in Boston. They have been in constant communication so far about what's been happening with Harlie. He said he would get infectious disease on board, and she would get a PICC line and go on IV antibiotics. 

IF the infection threatens her jaw/hardware, we would have to go to Boston, since her surgeon knows exactly how he installed her hardware. 

So, we have a plan. And I hope that we won't need it. The thought of opening her up again, and/or removing the hardware, well, I can't even allow myself to think about it. Two of her infections that resulted going back into the OR were close calls. In one case she went into cardiac arrest in the OR, so I'm not kidding here. And right now (and for the past few weeks), I can't stop thinking about those experiences. 

All I have to say is I am so incredibly grateful for Dr. Strauss. I can't imagine going through this without him to look at her and make me feel better. Just knowing that we are not relying on my eyes/knowledge only is a life changer. What a gift to have him cross paths with Tom at the right time. If you don't remember, Tom did his kitchen renovation.

Sunday, May 9th was Mother's Day and it was my Mom's birthday.  And she got to go home from the hospital after her spinal fusion on Wednesday. Hopefully her recovery from here on out will be good to her. 

I'm going to stop there for now.  Since I haven't shared a photo of Harlie recently, I'll share this one from May 3rd. 

In this photo she is trying to smile. So, you can see that she can't move the right side of her face.  Did I already talk about that?  Shoot, I can't remember. Okay, I'll tell you this real quick, and then I have to go.  When we realized that she couldn't move her face much I kind of panicked. I was afraid that we just sacrificed her smile for a potential better airway. And I wasn't happy about that. I mean, how could that be a choice? What is more important? Ugh. 

Anyway, I asked both surgeons about that and they said that the nerves are likely just bruised and it could take weeks or months for them to heal and come back. Thank God.

Okay, I will write more soon. I have a lot more to tell you about. I really wish I could write more often so my posts could be shorter. As always, thanks for reading and for caring about our sweet girl!

Much love,

Christy xo