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

Post-Op Day 10, Feels like Day 20

I started this post on Saturday, April 24, but while writing, we were told we could take her home, so I closed my laptop and haven't been able to get back to it.  So, here's what I wrote then and I'll write an update soon....

Seriously, are we only on POD 10?! Definitely feels like Boston was longer ago than that!  

Anyway, today is actually Day 11 (Saturday), but this is Day 10's update (Friday). Yesterday a music therapist came to visit. She works here, but also volunteers for Jacob's Chance and she knows Harlie from that organization. 

Harlie loved it (even though her expression can't show it yet) and was the most playful she's been since surgery. 

Harlie was watching the show The Loud House and the episode was about selfies. Clearly, neither one of us have been in the mood for selfies lately. But, I was feeling not as afraid as I was before and honestly, that was a welcome relief. Plus, Harlie's spirit started to show a bit, so I was feeling pretty happy about that. 

Dr. Strauss took her into the OR in the afternoon.  She had many dressing changes on Thursday.  Sometimes they were three hours apart, sometimes two hours apart.  But, it seemed to stabilize for the longest stretch with a dressing change at 9pm on Thursday and then not again until she went into the OR on Friday afternoon.  Dr. Strauss cleaned her all up, removed the sutures (went from ear to ear under her chin and then in front of each ear). And he put a suture in the neck drain site. He put Dermabond on all the incisions and a dressing. 

They gave her plasma in the OR.  I haven't been able to tell you about the hematology conversations I've had. Honestly, my sleep has been interrupted so many times, I'm running on empty and just haven't had the energy for it. Basically, some of her labs have come back confusing (clotting factors, vitamin K deficient, antibody something or other, mixing study, etc.). While I understood what she was saying when she said it to me, there is no way I could explain it to you. And, in the end, nothing she said was too alarming or sounded very serious, so that's really all I care about. They took more labs right before she went into the OR, then they gave her plasma in the OR, then they took more labs after the OR.  All of those labs take days for results to come back. So, we aren't solving anything this particular stay.  Will likely continue to investigate as out patient. Yay. More specialists. 

Anyway, this is how she looked after the OR.  I definitely can see Harlie coming back and we are thrilled!

Also, Dr. Strauss said she is over the hump - and our trajectory is now pointing in the right direction. That is always such a relief! 

Oh, a few negatives I forgot to tell you about - she has not been tolerating her feedings. Really, she hasn't been right in that department since her surgery on the 13th. That is pretty odd for her, for sure. And since she's been on some pretty heavy antibiotics, her GI system is suffering. Poor girl keeps signing that she's sorry. Oh, break my heart. I keep telling her that she doesn't need to be sorry.  I am the one that's sorry! But, at the end of the day, she is 14 and she has been pretty embarrassed and uncomfortable. The worst is during the night. That is what has been causing my lack of sleep (and hers, obviously). Having to wake up to get her up and to the bathroom, then clean her up, change whatever linens need to be changed, etc. takes time and it has been like 3-4 times per night. I am up and busy just long enough to really wake up and then it takes time to fall back asleep. I'll sleep more later. But, for now, I'd love some relief for her, because she is miserable. 

I also forgot to tell you about Thursday afternoon. I don't know what the heck I DID tell you about Thursday, haha! 

I heard that Harlie's pediatrician from years ago (Dr. Keith Derco) was going to come visit. He retired from that practice a few years ago and we have really missed him. He came to visit us at Children's National back in 2018 when she was in the hospital for two months (February - April) after her LTR surgery. We have stayed in touch because he has been a huge advocate for building a stand alone children's hospital in Richmond. And he has been working with the CEO of Children's Hospital of Richmond (Elias Neujahr) in making this happen.  Over the past few years, Keith has invited me to several meetings with Elias (along with other lifer or seasoned moms) to discuss a new hospital. And that project is coming along nicely and is currently being built right across from the hospital here. The new stand alone children's hospital is scheduled to open for business in two years.  Pretty exciting!

Anyway, so Keith came in followed by Elias Neujahr! What a nice surprise!  Like for real! How special do I feel that we had a visit from them?! Elias said a lot of complimentary things to me, which was super nice. He is a very kind hearted person. I am so, so upset with myself that I missed an opportunity to take a picture of them with Harlie.  But, Elias did ask me what they could do for me and I told him what would make my life a bit better and he did it!  

I was able to have Brandy relieve me at the hospital for a few hours on Thursday night.  I cannot leave Harlie alone on the floor at VCU.  I wanted to go home and shower and re-pack my bag. Plus, Harlie needed more stuff.  Anyway, on the way home I totally missed my exit! I never miss that exit.  I knew I was super tired when it took longer than it should've for me to right myself and then take the long way home.  Ugh.  

We are waiting to talk to hematology.  She's been cleared by all her other docs for discharge.  If hematology says they are comfortable for us to take her home, then we will.  

It is now May 3rd.  And we have been so busy since we left the hospital. I will update soon, but for now, yes, hematology came in the afternoon and said we could just be followed out patient.  So, we went home.  I noticed as we were leaving that there was a spot of blood on one of her bandages.  So, clearly the bleeding had restarted.  

Harlie HATES getting the IVs taken out.  I guess she hates all the tape that keeps it in place.  Because removing the actual IV isn't painful. Some things are way more anxiety-based than others, I suppose. 

She was home and in the chair for two seconds before Mabel jumped up to hang out with her.  

As always, thank you so much for all the love and support!  

Much love,

Christy xo

Post-Op Days 8 and 9. ED/Admission

Last night (Tuesday night) was okay, I guess.  Caylee put fresh dressings on Harlie's wounds right before she left and about an hour later, they were soaked through.  I took a pic (oh, you do NOT want to go through the pics on my phone) and sent it to a friend of mine who is a nurse and works at our local hospital.  She thought it was too substantial to continue to treat at home and she encouraged me to bring her to the ED.  I am not easily convinced to take her to the ED.  So, my friend took her phone to the ED and showed the pics to the attending.  He/she (I can't remember) said to bring her.  This was sometime around midnight. I checked on her again and the bleeding appeared to stop.  Her dressing was fine.  So, I sent another pic, just so they knew I wasn't crazy.  I told them I was going to wake up every two hours and check on her and if this dressing got soaked, I would bring her then.  She was "fine" all night, her heart rate came down and was good all night.  Her dressing was stable.  I think at 5 or 6am, Tom woke me up to ask her about meds, I told him what to do and he told me her dressing was still white.  So, he let me sleep.  At 7am I got up to check on her and the dressing was SOAKED.  I don't get it.  Ugh.  So, I told my friend that I was getting dressed and was taking her to the ED.  

I also texted her pediatrician and she called ahead for me.  I also texted our surgeon friend, and he told me to let him know when we got there and he would come see her.  

Since we had a little warning that we would end up in the ED, I could tentatively try to make arrangements for the boys. On Wednesdays, they don't go to school. And Cooper had an appointment at 9am.  Poor kid.  At like 10pm he came downstairs and asked, "Mom, so what's the plan for tomorrow?" He is struggling with the unpredictability of our lives.  I told him that I had no idea, but we would get him there and please try not to worry about it.  

So, Tom took him and dropped him off and Blake (a friend of ours) picked him up.  It really takes a village.  

Anyway, I had to change her dressing because it was bleeding through and getting everywhere.  I got her dressed gave her a dose of pain meds and took her to the ED.  

I wrote all that yesterday, but the day got so busy that I couldn't finish.  Now, my memory is a little foggy and I am really tired.  So, trying to remember everything and then putting it in writing is a little exhausting.  So, bear with me...

They wanted to get an IV, so the nurse used an ultrasound machine and tried her best, but was unsuccessful. I guess there were four of us or so holding Harlie down (including the surgeon) so Harlie certainly doesn't make it easy.  The nurse got some blood, but couldn't use it for an IV.  

The results of that lab work was very concerning.  Her platelets were very low and so was her white blood count.  The resident mentioned Aplastic Anemia and, unfortunately, I googled it.  So, I was trying to keep calm and not freak out - but between the labs and her inability to stop bleeding, it made sense.  

They ordered some blood for a transfusion, but they needed an IV to give it to her.  So, they had to try again.  I can't tell you how hard sticks are when your kid is off the chart anxiety and PTSD ridden.  I told the resident that the same person who tried the first time, couldn't try this time.  He needed to get the best they had and forget about that ultrasound machine.  Just get someone who can stick a kid one time, successfully.  

Well, this nurse did.  So, they took more labs and those came back all within NORMAL ranges!  WTH?  Not that I'm complaining!  I did NOT want her to have that.  But, geez, way to scare a mom!  

But, now we were back to not understanding what is going on.  Now that I've had an entire day to learn it, I'll try to break it down for you.

She isn't bleeding like if you cut your finger kind of bleeding.  It is old blood (very dark).  So, she doesn't have a vessel that's actively bleeding.  So the surgeon said he doesn't have to go into the surgical site and look for the source of the bleeding, thank God.  

The bleeding is really more like old blood seeping out.  They put in a drain line in her neck during surgery to allow the blood to come out.  When it appeared to stop draining, they pulled the line out.  I guess the line was a little smaller than the diameter of a pencil. It appeared fine for a couple of  days.  But, then blood started seeping out of that hole.  So, the bleeding is blood that is coming from her tissues.  That's what all the bruising is.  And he thinks that is why the bruising is so much worse on the left side - because there is no way for the blood in the tissues to seep out.  Whereas on the right side, there is an opening for it to escape.  

He's afraid to put a pressure dressing on it, or close it with a suture, because then it will back up internally.  Although maybe the pressure internally might stop it.  It is hard to tell.  

I asked him about the suture removal because it is very clear at this point that there is NO way in hell she is going to cooperate for that.  He agreed.  So, the plan is to take her into the OR on Friday (I think) so he can remove them, clean her up and get a good look at what's going on.  

So, around 4pm or so she got moved up to the floor.

 

I forgot to pack food for her in my haste to the leave the house, and the hospital doesn't carry her formula.  So, she went ALL day without feeding!  I did have the tubing with me, so I was able to give her water.   Once Tom got things settled at home, he packed a bag with some stuff for me and Harlie (including her formula) and brought it to me along with some dinner.  It was the only food I had all day.  

Things are a little more challenging now that Murphy has a job and is working more.  We can't count on him to help with Cooper.  And Cooper takes what is going on with Harlie a lot harder than Murphy.  So, Tom left a little after 8pm.  When he left he said good-bye to her and on his way out he told me that he thought she felt hot.  Well, an hour later her nurse checked her temp and it was 101.  Crap.  And that is while she's on Tylenol around the clock.  

So, the resident came to tell me that they had to get more blood cultures and she had to have another IV placed.  Damn it.  So, I told him the same thing I told the resident down in the ED.  No ultrasound machine, send someone really, really good.  

It was probably around 11pm or so, when in walked two people - with an ultrasound machine.  For reals? I will say he introduced himself as a doctor from the ED.  Well, that's interesting. I told him our experience with the ultrasound machine and that I wasn't loving the idea of trying it again.  He said that the ultrasound machine was "his thing."  This is where it gets so hard.  I have heard people say things like that, then they end up sticking Harlie three times.  I mean, I don't know these people, I don't know their track record.  Are they really good, or what?  And I can't stop them.  I have to let them do their thing.  But, there is still an instinct to protect your kid, and I didn't want them to have to stick her any more than necessary.  Also, they do it and leave.  I am the one telling her she has to do one thing after another that she hates or causes her pain.  

He got it on the first try and he got a big vein.  I told him good job.  And then he said thank you for trusting me.  Nothing personal, but man was that hard!  They added Vancomycin (antibiotic) or her meds (along with Zosyn). Vancomycin can be hard on veins, so great job to him for getting a big vein!

At some point late in the night, Harlie's nurse asked me if I wanted her to bring in a bed for me to sleep in.  Um, are you kidding me?!  

Oh, I was so happy!!! You have no idea!  The only time I've ever slept in a bed in a hospital is when Harlie was in rehab.  So, yay for that. Although, according to my Garmin I slept for a total of 1 hour and 46 minutes, and not in a row.  And, boy do I feel it. 

Anyway, I had to change her neck dressing at 1am, 4am and then the docs changed it at 7am. All three times the dressings were completely saturated.  Crazy.  And she wasn't moving around, she was just sleeping.  

Thursday

Tom came by in between appointments he had close to the hospital.  He always brings energy with him.  I am lacking in the energy department, that's for sure. 

The other night Harlie received a package.  It was from "Friends in the Neighborhood."  There were actually two packages and this awesome face mask was in one of them...

Hahaha!  Sooooo funny!  Thank you so much!

We've had to do a few dressing changes today.  And we are trying warm compresses on that really bruised side because they said it can help the blood break down and get dissolved by the body easier. Or something like that. 

Well, this is all I have time for today.  Thank you so much for your continued love and support.  We appreciate it so much!

Much love,

Christy xo

 

Post-Op Days 5-7

Post-Op Day 5 - Sunday

Hi,

I'm sorry I haven't posted in a few days.  There just hasn't been time. I've been writing what I could, when I could, so this post might be a bit choppy. 

So, on Sunday, Tom got up early and went to the airport to pick up our rental car.  I headed to the hospital and when I got there plastics was in her room.  He asked me if Harlie had ever had an unusual amount of swelling post op before.  No. He said that she does have more swelling than they expected.  He wondered if one of her heart medications might have had a negative affect on her swelling.  He also asked me if we put ice on her face after surgery.  

Well, this is a real problem with Harlie's care.  Because of her heart defects, she always has to go to the cardiac intensive care unit.  But, the negative is that those nurses don't normally take care of craniofacial patients after major jaw surgery.  So, they don't do that kind of care on a regular basis.  Ice wasn't mentioned for a while (hours/next day, I can't remember) and they were not great ice packs. I really wish her care could be handled differently.  There's got to be a better collaborative approach to her care.  

Anyway, after they left, Harlie asked me for her tablet.  I looked everywhere, but it was gone. I held out hope that her night nurse put it somewhere, or that it got mixed up in the linens, etc.  I really wanted there to be a reasonable explanation that ended up with her getting her tablet back. But, that wasn't the case.  Someone took it from her bed while she slept.  Her room is right across from the nurses station (they said they put her there to keep an eye on her).  So, it was an employee.  The trash had recently been emptied, so it could've been whoever took her trash.  Seems like it would've been worth asking who did the trash in that unit.  Yet, no effort was made.  They called security (what a joke). There are no cameras. Tom did the "find my device" thing and it was still in the hospital until late afternoon/early evening.  Tom locked the device, he made it alarm, etc. Unless Tom and I searched the hospital ourselves, there was no way we were getting it back.  I just can't explain how infuriating this is, how violated we feel, how incredibly awful this is for Harlie.  

I know the easy solution is to replace it with a new tablet.  A better tablet, even. But, it isn't that easy. Harlie gets attached to things.  She doesn't go to school.  She has no friends.  She has no activities she's involved in (soccer, dance, etc.).  When you have less in your life, what you have means a lot more.  

A few years ago she had a tablet that was full.  She couldn't put new apps on it and that was driving her crazy.  Easy - get her a new tablet with more memory.  So, Tom got her one and excitedly gave it to her.   She took one look at it and said, "No. Take it back."  She didn't want a new tablet.  She wanted her tablet to work better.  We tried several different ways to explain that it was full. I don't know why this was hard for her, but it was. Tom took a few days to think about it.  He came home one day and said, "Harlie let's do an experiment." She was all about that.  So, he put several different sized bowls and had her fill them up with water. He asked her to put more water in a bowl.  She said, "It is full, no more water will fit." So, he reached for a really big bowl and he said, "See how much water it holds?  This is like a new tablet...."  And she said, "No way!" and left the kitchen.  But, she thought about it and realized what she needed to do.  She couldn't watch him transfer the stuff from her tablet to the new tablet.  She actually sat there saying to herself, "Go to your happy place, go to your happy place.  Daddy!  I can't find my happy place!" Haha! The thought of letting go of her tablet was so hard for her - even though the new tablet was going to be better, and she was still going to have all of her stuff the way she wanted.  

Now, her tablet is gone.  Taken from her while she slept in a hospital that was supposed to be watching her, taking care of her and keeping her safe.  

The realization that we had a new, huge problem that we couldn't solve, and that was going to hurt our child, was awful.  There is no getting her tablet back.  Period.  It is gone.  We will get her a new one.  A better one.  And she will have to get over it.  She has no choice.  We have no choice but to tell her.  She keeps on asking if they have found her tablet yet.  We don't have the heart to tell her the truth - that they aren't looking for it.  They don't care.  And whatever employee took it will continue to work there, with access to do it again.  

We have had an amazing amount of people that think this was equally as despicable as we do and they have offered to help.  My sister-in-law, Kristie, started a GoFundMe and collected just over $1,000.  We received an Amazon gift card from friends. And so many friends have reached out to me personally offering to do whatever they could.  We appreciate you all so much.  I know it must not be easy to have to watch Harlie and us go through so much and you not be able to do anything.  We just appreciate that you're there for us. However, if you still want to help in some way, you can donate to We Heart Harlie & Friends.  This hospitalization cost us over $5,500.  We Heart Harlie & Friends helps with costs like this, not only for us, but for other families, too.  

Back to my story, her nurse came in to take out her IVs (the last thing they do before discharge) and Harlie said, "No!" I said what I normally do, "Harlie, don't you want to go home?  They have to take them out so you can go home." Then she said, "But, I'm not ready." That is a first.  Then she pointed to her face.  I told her she can't stay in the hospital until her face heals. And I went on to say that we all love her and think she's beautiful and we aren't frightened or bothered by her swelling or bruises.  That wasn't as comforting as I hoped.  And she still protested and was extremely uncooperative, which made the nurse call for more help.  So, after another nurse got there, I had to step away.  Ugh, that was really hard and I had a really tough time keeping my stuff together.  After they were done, I took her into the bathroom to get her dressed and she told me that she wasn't leaving without her tablet. Ugh. 

That was the most unhappy, uncomfortable exit from a hospital stay we have ever had.  And that's saying a lot.  

We got in our rental and drove home.  We had to stop three times.  It broke our hearts to see Harlie hang her head, trying to hide her face from other people.  The trip home was actually quite difficult.  It is just very challenging to take care of a kiddo (who still needs a lot of care) in a moving car.  We had a bag of prescriptions and there wasn't Tylenol or Motrin in there.  Luckily Caylee had packed us some, but it was in Harlie's suitcase, which was under everything in the back of the SUV (including her wheelchair we had to break down to fit in the car).  So, Tom had to take everything out, open up her case, dig out her home meds, and then put everything back in.  All the effort and stress just adds up.  

Anyway, we made it home a little after 8pm.  

This is how she looked and why she hung her head. 

Oh, our sweet girl. 

That night was a rough night. We set our alarms to get up to give her meds on schedule.  I took the 12:30am one, and Tom took the 4:30am one.  After I got up and gave her meds, I couldn't go back to sleep.  At around 1:30am she was coughing and sounded like she needed suctioning.  So, I went in there and she said, "I keep hearing loud noises." She wanted me to hug her, so I just laid with her for a few minutes until she seemed settled, and then I went back to bed.  

I don't like to cry and I've mentioned that several times in my blog. But, I couldn't help it.  In that moment, I hurt so, so bad.  And I was so afraid.  What if her hearing was damaged?  What was happening in her head?  And I thought about the suicide of the CEO of Longhorn Steakhouse, who took his life after experiencing unbearable tinnitus.  My thoughts just ran away and I was so, so afraid of her being in pain that we don't know, understand or can fix.  And, all that lead me to an overwhelming feeling of regret.  Complete and utter regret.  I did this to her.  And I hated myself.  I woke Tom up, which I felt terrible for doing since I knew he needed his sleep.  But, I knew he'd want me to anyway. It was a really hard night.  Once I finally fell asleep, I had a dream that I went into Harlie's room the next morning and she looked totally normal, the way she used to.  And I knew I was dreaming.  

I keep trying to tell myself that this is all temporary and she will heal and everything will be great.  But, it doesn't change how hard it is right now.  

Monday was a busy day of just getting settled.  In the early part of the day Harlie came downstairs to work on her Lego set.  While sitting there, blood kept dripping off her chin and it was annoying her.  It was annoying her enough that we were able to convince her to let us clean her up.  So, we cleaned her wounds as best as we could.  But, since her ear is still bleeding, it drips down and then makes the whole wound site bloody, which then dries and becomes a big, unhealthy mess. 

Tom has a client who is a plastic surgeon.  He reached out to Tom and asked him if we needed anything (like suture removal).  So, I called him and gave him an update on Harlie and what we are struggling with (her bleeding from her ear, trying to keep her wound sites clean, etc.).  He asked me where we live and said he would come by and take a look at her that night!  How great is that?!  As much as I feel beat up by the universe, we are so incredibly lucky to have so many wonderful people by our side. 

So, he came by and looked in her ear and said he could see her ear drum, so that's a relief! He also had a tool that we don't have, that helped get the caked dried blood off.  He was able to get her cleaned so he could see her sutures.  The ones under her chin (that go from ear to ear) look good.  Her surgeon said sutures should come out 7-10 days after surgery.  He took a look at them and said he thinks they need till Wednesday or Thursday.  And he said he would come to our house to do it!  Yay!  

A few minutes after he left, Harlie had blood dripping down her face. I took a picture and texted it to him.  The good thing is that you could clearly see that the source of the bleeding is not her ear, it is the top of the incision in front of her right ear.  And her drain site in her neck is bleeding.  He told me to apply gentle pressure for 20 minutes.  I said, sounds easy. Haha!  So, I did and we all went to bed.  I did the 1:30am meds and Tom did the 5:30am meds.  

I woke up to Harlie standing in front of me covered in blood.  Yeah, not a fun way to wake up.  She wanted to show me her pillow (which was also covered in blood).  So, I put her in the tub and got her all cleaned up.  I had to empty the tub several times because of all the blood.  It was awful.  And it wasn't fun for Tom or Murphy who had to take lukewarm showers after I used all the hot water.   Oops.  

I put her on her bed and had her get on her left side and I held gauze on both the neck drain site and incision for like 30 minutes!  Caylee arrived to work and she took over and held it for like another 30 minutes.  It will NOT stop bleeding.  We put gauze on it and taped it as tight as we could.  But, it just bleeds through.  

So, I sent some photos to her surgeon and he said she might need some more sutures.  Ugh. There is no way she is going to be cooperative for that!  So, I'm not sure what I'm going to do about that.  

All day today she was really quiet and hardly spoke a word.  I wondered if she was just feeling really down.  Her swelling is no better today than yesterday.  And, honestly, her left eye looks more closed than yesterday.  It is really hard to look at.  I was thinking that the bath and holding her sites for an hour just stressed her out or wore her out.  But, into the evening, she made us worry more. Her heart rate is elevated for her, she was unusually out of breath after walking up the stairs.  She's been on Motrin/Tylenol around the clock for a week, so I'm afraid that would mask any fever she might have.  And, at this point, she's been bleeding continuously for well over 24 hours.  Maybe she's anemic?  

So, I spoke with her pediatrician and she said getting some labs would be a good idea.  So, we are going to watch her really closely tonight and evaluate in the morning.  I might be taking her to the emergency department in the morning.  Between her needing stitches and blood work, the ED is the best solution.  I just really don't want to take her at night if I can help it. 

The good news is that she got her new tablet today.  We ordered her a new one while we were driving home from Boston.  Yes, we got her the latest, greatest and nicest tablet we could get.  I guess not having a tablet at all (and she now understands that she is not getting her tablet back) made her much more agreeable to the new one.  She figures things out in her own time.  Honestly, Tom and I are shocked (and grateful) that she handled it as well as she did.  Tom was able to download most of her stuff from her old tablet onto the new tablet, so it had the same screensaver for example and we ordered her the same cover that she had.  She seems grateful to have it.  So, thank you to all the good people who contributed to Kristie's GoFundMe and donated in other ways.  We are overwhelmed by your kindness and generosity! 

Ok, I have to wrap this up. Thank you so, so much for being there for us. I have so much more I want to tell you about (and thank you for) but it is late and I know I won't sleep much tonight, so I have to stop writing for now. 

Much love,

Christy xo

Post-Op Day 4

Hi All,

Harlie's swelling looks like it is marginally better today (compared to yesterday).  I'll add a pic in a bit.  I've learned that the first pic I add to my blog is the one that gets highlighted when I share the blog post on Facebook.  So, I'm sorry for all of those with weaker stomachs who hate me now.  They should just be thankful their kid isn't going through this.  Because we cannot wince or show any issue with looking at her.  Poker face.  All day, people. 

It is hard to believe how swollen she is, despite all the meds they are giving her to help with that.  God knows what she would look like if they didn't give them to her! 

She has attempted to look at her tablet several times over the past couple of days, but I guess she realized she couldn't see it/hear it.  So, she shut it.  Today, however, she was able to watch a show or two.  So, that's a little progress.  

Plastics always comes super early and her nurse told us that when they came to look at her incisions and drain site, Harlie signed "stop" and swatted them away.  You don't have to know sign to understand what she's saying.  Her gusto and attitude gets her point across.  

If the nurse shows Harlie the blood pressure cuff, Harlie willingly lifts her arm.  But, if you're coming for her IV or near her face, she is not as cooperative.  Tom and I have been watching Shameless and one of the characters wears a sleep mask that I think Harlie should have.  

I think it would be hilarious, but I wouldn't want to offend anyone.  So far, most of her doctors and nurses have had really good senses of humor.  So, I'm thinking it would've been okay this stay. Oh well, next time.  Haha!

So, this morning we called home to check on the boys.  I was on the phone with Maggie (my niece) and she went and sat on the slack line in our backyard.  While we were talking, she exclaimed, Whoa!  So, I asked her what was wrong.  She told me she fell off the slack line - so I said, "Tom, pull up the camera."  Haha!

Ahhh, I'm so sorry, Maggie, but this is too funny not to share!  I have to say that you didn't miss a beat, I would never have known you fell if you didn't tell me.  Your voice didn't change at all!  I have laughed so hard watching this video!  I cried tears of laughter!  You totally made our day better!  And you're such a great sport!  Love that about you! Thank you, Maggie! 

So, here's how Harlie is looking today, on Day 4.  

She stares at me.  I've asked her several times if she is mad at me and she shakes her head, "no." I then sign and tell her I love her and that I'm sorry and she signs that she loves me.  But, damn, that stare!  I'm not sure I believe that she isn't mad.  And, really, I couldn't blame her! Our poor, sweet girl!  Oh, our hearts are aching!

I have uploaded so many pictures, just to delete them.  I want to share them, because it makes me feel like we are less alone if everyone else has to see what we have to see.  But, then I realize that probably isn't fair to you. The bruising goes from the top of her chest (collar bone area) to behind her ears and into her hairline.  We keep telling her it will all go away.  She doesn't appear to be comforted. 

Harlie watching the backyard camera with Maggie, Cooper and the dogs
talking through the phone.

The team rounded this morning.  The attending cardiologist is her cardiologist here and we just saw him pre-operatively on Monday.  He's one of the few people who knows what she really looks like.  I told Tom yesterday that I wish we thought to print out a picture of Harlie to put on her door.  

Anyway, she is now on all meds through her g-tube.  So, assuming all goes well today through tonight, we are planning to take her home tomorrow.  Tom found a car to rent, so he will go to the airport to get that taken care of tomorrow morning and then head back to the hotel, load up the car, check out, then come to the hospital to pick us up.  When we told Harlie we were going to go home tomorrow she pointed to her face.  So, Tom told her we are going to drive instead of flying home.  

Her nurse told me that when she took her to the bathroom, Harlie wouldn't go to the sink to wash her hands because she didn't want to see herself in the mirror.  I knew that, but it is kinda crazy that Harlie is able to get that feeling across to other people, too. 

Normally, I feel pretty good about taking her home, but this time, it feels weird.  She is telling us she isn't ready to go home.  We think she doesn't want anyone to see her.  We've asked her if she wants to go for a walk on the floor, or out to the garden, but she says no.  I know each day will get better, but it is still hard to constantly make her do stuff she doesn't want to do. I am fine taking her home.  I am just worried that all the moving around is going to hurt her.  The bumps in and out of doors in her wheelchair, for example.  I wouldn't even consider walking her down the street with all the uneven pavement!  Doesn't that just sound painful when you're head is aching?!  And oh, the looks we are going to get!  

We were able to convince Harlie to let us give her a shower today.  It was tricky because they don't want us to get water on her IVs (one in each arm) or in her ear.  I think I did a pretty good job, considering.  After her shower we did her wound care, I changed her trach ties, put her hair up in two little buns and I think she felt so much better.  She wanted to sit in the chair instead of getting back into bed. That's great!   

She asked for Legos, so Tom went to a local toy store and got her some.  She wanted to do it, but she got so tired and had to stop.  Man, it is hard thing to see a kid not have the energy to play. 

Side story, usually I don't remember my dreams. And I can't believe I'm going to share this with you, but I think it is so funny.  I am in a Fantasy Football league with some family and friends. And we have done it for the last five years or so. Last night in my dream, it was like 3 weeks into football season.  I made a comment to a family member that is in the league that I was sad we didn't start our league this year, and I was missing it.  They looked at me like, oh crap.  And I realized that they started the league without me!  I asked a friend if she was in it and she said, "Of course!"  So, I started to cry and walked away.  Hahaha!  I woke up and thought, what month is it?  Oh, April!  Whew!  Just a dream.  Haha!  I have giggled every time I thought about it. Silly.

Well, I'm going to wrap this one up now.  There have been lots of interruptions, so my thoughts are all over the place here.  Thank you for all the love!

Much love,

Christy xo

Post-Op Day 3

It occurred to me that when I post this blog to Facebook, it shows the first pic really big. So, sorry about that! So, I added a much better pic, so that people scrolling aren't startled by a huge pic of Harlie's swollen face. 

Okay, on to our reality...

Day 3. Peak Swelling Day.  

Dear God, I hope so.  

Last night when we left, I was feeling soooo yucky.  The good thing is that I really liked her night nurse.  She seemed like she was tough, but compassionate. And she was a problem solver.  I like that in a person.  

We left close to 9pm.  It was hard to leave her.  And as we were walking to go find some dinner, I told Tom, "This is it.  I am never asking her to go through this again." And he said, "You say that every time."  

I can't help but think that fundamentally, humans are way stronger than we give ourselves credit for.  We need to try and remember that.  Somehow, when we are challenged, we dig deep and survive.  As we walk through the streets of busy Boston, I do not see strong humans.  I see people who are afraid of everything.  I wish I could tell them that they are stronger than they know.  But, if you believe you are weak and afraid, then you will be weak and afraid.  

We are not weak or afraid.  And somehow, despite how incredibly HARD this is, we will get through it.  And, I suppose, in time, when we are faced with new information and new possible solutions, I will weigh them in the grand scheme of things and make a decision based on that information - not on my memory of this surgery/recovery or on the emotions I'm feeling right now.  It is what I have been doing for 14 years.  

But, right now, I am saying, I am never asking her to go through this again. 

Also, last night, I was able to peek in her mouth.  That front, bottom, permanent tooth is gone.  GONE!  Where did it go?  We know she didn't swallow it.  When did it come out?  I think it came out on surgery day.  I just can't explain how I'm feeling right now.  Why oh why did I make the decision to remove that damn splint?  WHY?!  March 18th.  Less than one month ago.  After all that effort, and she freaking lost another permanent tooth anyway.  After all this poor kiddo has to go through - it is just salt in the wound.  I HATE to say things like - it's unfair, or can't she catch a break?  It is hard to have a good attitude and laugh when you hear yourself saying those sorts of things.  But, fuck, it is so unfair! Sometimes, I think God has a voodoo doll of her.  I want him to pull all the pins out, hug her, say he's sorry, and then put her down and leave her alone. 

Yikes.  That might be harsh. Sorry.  But I can't help what I think when I'm pushed like this.  It's killing me, people.  Killing me!

Okay, changing subjects to talk about something good...

A while ago, I reached out to my family asking for help with the boys and dogs while we are gone.  Jordan (my niece) was quick to create a spreadsheet and sent it out to everyone so they could sign up for different shifts to cover.  How great is that? It is bringing a smile to my face right now.  

Murphy got a job right before we left.  His first day was Saturday (we left on Sunday) and he said he really liked it.  He is running food at our favorite restaurant.  And he is trying new foods while he's there, which we are LOVING. He tried sushi!  For those of you that know us well, you know how much we love good food.  And somehow we have produced three kids who do not appreciate good food.  Well, one doesn't even eat any.  Haha.  Anyway, the thought that Murphy is growing into a person who might appreciate good food is making us so happy.  Plus, this place is generally pretty busy, so if he can move faster and work harder, that would make us really happy, too.  Oh, and they seem to be keeping him busy with plenty of hours.  So, he's going to have to figure out how to manage that with his schoolwork.  Also, good skills to develop.  

Cooper tried out for track at his middle school.  Of course track try outs were this week, while we are gone.  Maggie (his cousin) had that shift on Tuesday (I think, the days are running together at this point) and she went up to the school to cheer him on.  How great is that?!  We were crossing our fingers that he made it.  

He has really been struggling with virtual school.  It did NOT work for him.  And he went from an A/B student who LOVED school, to literally failing every single class.  And for all the people who think it is from a lack of parenting - I am here to tell you that is NOT true.  Anyway, we sent them back to school the second we could.  Just the other day Cooper said, "Tomorrow's going to be a good day, all of my teachers will be there!"  Not all of the teachers have returned, so some of the classes are still virtual, even though he is in school.  Anyway, the school said that only in person learners could try out for school sports.  So, I told Cooper, this is your year, bud!!!  Haha!  

He called me yesterday afternoon to tell me that he made it!  I said, "Congratulations! I'm so proud of you!"  Then he said, "Mom, everyone made it."  Haha!  Cooper's keeping it real.  

Speaking of keeping it real, I have to tell you this... Cooper had like a 3% F in Social Studies at some point earlier in the 3rd quarter.  Social Studies was one of his favorite subjects last year, and he was put in an advanced class.  But he literally had a 3% F.  He has been doing Adrenaline with our friend Paul for the past few months.  He really likes it.  That lead to him thinking about trying out for track.  The school posted that the students have to have a passing grade in all core subjects in order to participate in school sports.  Finally, some positive motivation!  

So, after a few weeks or so, I was sitting at work and I got an email from Cooper.  The subject was "I DID IT" and he sent a picture of his grades.  He brought his Social Studies grade up to a 66.3 D.  Haha!  Well, the fact that he cared at all is a total win.  Thank you to my dear friend, Bethany, for working with him so much to help him bring his grade up!  And thank you, Paul, for helping his mental and physical being with Adrenaline!  I'm so grateful for our friends who are always willing to get in the trenches with us!  

Speaking of our friends, we had several people offer to drive from Virginia to Boston to come get us!  For real!  You people are crazy!  Haha!  Love you all, so much! We will let you know if/when we hit a dead end and need that.  

Well, we just did all of Harlie's wound and trach care and she was NOT happy.  This morning, plastics came and pulled that drain line in her neck.  Luckily, we were not here for that. I feel bad saying that.  The truth isn't always pretty, that's for sure.

Oh, interestingly, one of the docs on the plastics team that we met right before they took her into the OR said he looked in her chart and saw that Dr. Magee was one of her surgeons from way back.  He said he knows Dr. Magee and he asked us how we ended up with him.  Dr. Magee and his wife started Operation Smile and when we lived in Norfolk, VA, I worked there.  So, after I had Harlie, I called him and he did two of Harlie's first jaw surgeries.  She had a cardiac code in the OR there, and that hospital (Children's Hospital of the King's Daughters) didn't have a cardiac program.  So, I couldn't take Harlie back there.  That is why we chose Boston, we knew we wouldn't have to worry about cardiac support.

Well, today that same doctor came to chat with us.  He said he was reading Harlie's history and he had a question.  He told us that he went to her surgeon and said, "So, I was reading Harlie's chart." And then her surgeon said, "I hope you had a drink."  Haha!  Man, I love a good sense of humor! Yes, her chart/history is crazy.  Anyway, he asked him if he knew if we had ever seen genetics.  Her surgeon said, we probably had.  But, we told him no, not really.  We did very early on (soon after Harlie was born), but there wasn't much to be said.  

Well, this doc is interested.  He asked if we would want to find out/learn more about why/how she is the way she is.  I told him if it were easy, yes, but if it would take effort on my part, then, no.  He said he would make it easy and he would handle the research/study for us.  Research away, buddy!  So, he returned with consent forms and tomorrow he will come back to take our blood.  So, we'll see what comes out of that.   

Here are some pics of our day so far...

It was raining too hard to walk.  So, we got a taxi.  We tried Uber, but there are very few Ubers now and there were NONE this morning.  Luckily, there was a taxi sitting out front of the hotel, so we jumped in.  On the way to the hospital the rain turned to snow.  

  

The view from Harlie's room.

Tom took the arms off Harlie's wheelchair so I can sit in it.  

Harlie suctioning her mouth.

At this point, I don't think she can see much at all.  And she can't hear.  And she can't talk.  Ugh, killing me, people!!!

Harlie knows the buttons by touch.

They brought her a bunch of ice packs, and we put them on her face.  She didn't even protest. 🙁

Plastics came by and brought her these eye ice packs.

This is when we were getting her all cleaned up, doing wound care, trach care and changing dressings. And we keep telling her we love her and that we are so very sorry. 

When Plastics came by they said this is a lot of swelling.  Sounded like it was a little more than they were expecting.  They have her on something for swelling, and we added some Lasix and a steroid to see if any of that helps.  

Her inner ear is still bleeding.  And now they can't see her ear drum anymore.  I swear, if something bad happens to her hearing (worse from the way it already was) from this, I'm going to lose it.  

We've received some gifts while we've been here - baskets, bags and dinners.  So, thank you all so much for the love.  We are so very thankful for each and every one of you! 

Well, that's it for today.  

Much love,

Christy xo