Thursday, August 31, 2017

Post-Op Day 23

Today has been a good great day!

Kristie is here and we are so happy!





An artist came to draw something for Harlie. She actually stopped watching tv to watch him draw! That's amazing!



The finished product! How awesome is that!??


Harlie got moved to a new room with a bathroom. So her nurse washed her hair today! Woohoo! Harlie was NOT happy about it (I didn't take pictures of that). But after, she was a different girl!


All smiles!


Then the respiratory therapist came and brought us a PMV (speaking valve). She was not happy about that either...


She said it hurt to talk. But, later she looked at me and I could tell she wanted to say something. So I got up and got the valve and she said all this... (I don't think this video is uploading. I'll have to work on it tomorrow.)


Then she wanted to say thank you to all of her amazing supporters out there! Seriously, without all of your support, I don't know where we'd be. We would be a mess!!!


I can't tell you how incredible It feels to hear her voice again. It feels like it's been forever. I was doing her trach care yesterday and it felt like the last two years living trach free didn't even happen. So weird.

It is amazing how fast things change with her. First thing this morning, the PTs came and made her walk. That was agony. She was really upset. It was so horrible that I didn't take any photos. And then, just a few hours later, she is all smiles!

It really was a great day. I even got a run in - 3.5 miles! Woohoo! After my run I went back to the hotel to shower and change. On my way back to the hospital, look who I ran into!!


He was two feet away from me. He's very large and a little bit scary. But they must bring us good luck!

Lastly, I just want to say Happy 15th Anniversary to the love of my life, Tom.  I'm really hoping Harlie and I can come home soon so that we can all be together again.


Okay, well it's time for dinner! My friend Sally has something planned for us, so we are excited about that!

Thank you, really. I just can't say it enough. All your comments, love, prayers, messages, donations, etc. have been more helpful than I could ever say.

Much love,
Christy xoxo


Wednesday, August 30, 2017

Post-Op Day 22

Post-Op Day twenty freaking two. That's what I sort of wanted to title this, if you get my drift. But I'm trying hard to keep my shit together and not start swearing (out loud).

She is still on trach collar, which means she is breathing completely on her own. She is just getting oxygen and humidifiied air via the collar.

She has coughed virtually non-stop, which must be awful for her. I can only speak from a parent's perspective (of a trached child) that it is freaking BRUTAL.

The non-stop coughing up secretions really wears on your brain.  Well, at least my brain. Nope. Didn't miss this crap AT ALL.

Physical therapy came and made her walk. She walked twice as far as she did yesterday. She walked to the nurses station and back, taking a break in between.


She was not happy about it, and you might be able to see her tear filled eyes, despite her smiling for me. She kills me.

After her walk, while she was in the chair, I tried to brush her hair. She was not having it. And she was pretty pissed/upset about her IV, which I can't do anything about. Every nurse has checked it out and none can see why she's so upset by it. By then occupational therapy was here and I left the two of them to fight it out play, while I went to the store for some detangler for her hair.

And, darn it, wouldn't you know I had to go to two stores? And then I accidentally took the long way to the second one? So I was gone a lot longer than I intended. Shucks.

They are moving us into a different room, same unit. This new room has a bathroom with a shower. And they want her to be able to start going to the bathroom instead of having to wear diapers. And they said she can shower, too, which she desparately needs. Twenty freaking two days, people. So, that should happen any time now.

Tom's sister, Kristie, will be here tonight. And then Tom will be here Saturday.

Oh, last night I thought I was going to lose it. At about 10:30pm, I heard a very loud generator-type sound with an annoying high pitched whistle, outside the hotel window. Oh my gosh. They were vacuuming the train tracks! Till like 2am!! What the hell? Rude.

So, tomorrow, if she is coughing less, which I really hope, then ENT is supposed to come and try a PMV (speaking valve). So, keep your fingers crossed for that to be successful.

That's it for now. Gotta get packed for the move two rooms down.

Thank you for your love and support!

Much love,
Christy xo





Tuesday, August 29, 2017

Post-Op Day 21

Hi! Today has been a good day.

I went to the gym close to the hotel (versus the one closer to the hospital) first thing this morning and overall that was a time saver. Although my workouts are far from ideal at this point.

I stopped at the hotel front desk on my way to the hospital. I just wanted to make sure that we were still getting the medical rate. Some of the charges on my credit card were a little confusing. So, I told him my room number and he looked very confused. He said that the computer was showing that room as vacant. Then he said, "Are you sure you're in the right hotel?"  Haha! I had to laugh. Then I said, "yes, I've been here for over three weeks." Anyway, long story short, I didn't know my correct room number.  Luckily, I know which door it is. Hospital brain... He said we are still getting that rate and that I can extend after the 5th if I need to. So, that's good.

We have our favorite nurse (Alexandra) again today (and yesterday) and she did all of her stuff (abdomen packing and dressing change) that required Ketamine first thing. That way she could wake up from that and have the rest of the day available for her trach collar trial.

So, at 11:30am, they took her off the vent and put her on trach collar. It is now almost 5pm and she is doing great! And she got out of bed and went for a walk!


She wasn't thrilled about it, but she did it!


It was so funny, right after I took that picture, her diaper fell off and plopped onto the floor. It was hilarious. And I was the one that changed it, too. It's way too big for her, but when she's laying in bed its fine.

She walked maybe 30 feet or so. Then she was done. So she sat in her wheelchair and we strolled around the rest of the unit. I'm pretty sure that when she got back, she was glad she did it.

So, they are going to keep her on trach collar until she shows signs she's not tolerating it. She looks pretty good, so I'm feeling pretty good about it. Now they are going to see if she can be weaned from the oxygen.

As long as she is getting those dressing changes and getting Ketamine for her abdomen, then she has to stay in the ICU. But, if she does well lung wise, then hoepfully we can go home the second her abdomen is healed enough to stop packing it. They tell me at least one more week for that.

They deflated the cuff around her trach, but she's not making any noise. When I try to get her to attempt to talk, she shakes her head no. Alexandra said that her throat could be sore. I'm sure that when she's ready she will try to talk. I would just like to hear her. It has been so long since I've heard her talk or laugh. Although, I have a feeling they will have to downsize her trach for optimal sound. I'll talk to ENT at some point this week and see what they think.

So, overall, I'm feeling much better about where we are.
It feels good to finally post some really good news. Progress!!

Thank you so much for hanging in there with me and reading these updates. I feel less alone knowing that so many people care! Seriously, I would be a mess without your amazing support!! Thank you!

Much love,
Christy xoxo


Monday, August 28, 2017

Pst-Op Day 20

Today was fine. The only thing that really happened was that ENT came and upsized her trach from a 4.0 to a 4.5. Apparently the numbers on her vent were better after.

It was weird/hard to watch someone else do a trach change. I changed her trach once a week for nine years. Between our nurses at home, Tom and myself, I've probably changed more than 400 of them. She's pretty protective of herself at this point and was not cooperative at all. So, they had to give her some Ketamine. Gotta tell you, I'm ready for her to not need Ketamine anymore. It is not fun to see your kiddo like that.

Speaking of Ketamine, Dr. Haas came and changed her abdomen dressing/packing. It is impossible to coordinate doctor visits in the hospital, so they had to give her Ketamine at two separate times. I asked him how much longer she'll need these dressing changes, best guess. He said probably another week.

The plan is to attempt trach collar again tomorrow. The last time we tried it was 10 days ago. Well, it will be 11 days tomorrow. And it did not go well. But she is in a different place now. A better place, lung-wise. And she has a larger trach. So, maybe it will go better. We were going to do it today, but there was an issue with a patient next door that required a lot of doctor/nurse attention. So they didn't want to do it just in case it didn't go well.

So, we'll see how tomorrow goes. I really hope it goes well. Trying to be positive, but not get my hopes too high at the same time.  It would be really nice if she were on trach collar and ready to go home when her abdomen is done needing to be packed. I can't believe I just typed that sentence. "Really nice?" Call me naive, but I never thought she would ever have a trach again.

We are starting our 4th freaking week here. I am so ready to see the light at the end of the tunnel. When I start to think about being home again, I have to stop myself.

She got music therapy today. She liked it.


After physical therapy and music therapy, she was super tired.


Last night Tom and I went out to celebrate our anniversary. He is so good about finding ways to have fun, even when our situation isn't great.

We went to the Skywalk Observatory at the Prudential building. It is on the 50th floor.




Then we went and got a drink at Top of the Hub, on the 52nd Floor. Then we went to dinner at a place called Lolita. It was a Mexican place and it was really good. After dinner they bring a ginormous thing of cotton candy with pop rocks on top. It was fun.



He flew back home tonight. But, he did my laundry first, which was totally awesome. He really is the best. On Wednesday, his sister, Kristie, is coming to stay until Saturday.

Well, that's it for tonight. Hopefully I'll have some good news tomorrow. Thank you, as always, for all your love and support.

Much love,
Christy xoxo







Sunday, August 27, 2017

Post-Op Day 19

Nothing new to report here. Nothing has really changed. Harlie is the same as yesterday except more tired. Much less play today.

Tom is taking me out to dinner tonight for our anniversary, which is Thursday. He also sent me out to get a manicure and pedicure today while he stayed with Harlie. It was very nice to be out. I have spent between 10 to 13 hours a day for the last 19 days, in the hospital. Of course, how can I complain when Harlie has been here 24/7? But, I have to admit, it wears you down, that's for sure.

I am really missing the boys, Rooney, home and our old life. Tom asked if I wanted him to bring me warmer clothes from home. For the life of me I couldn't remember what clothes I had. Totally forgot which jeans were my favorite. It feels like forever since I've been home. Tom said he did the math and out of 70+ days of summer, I have only seen the boys 27 days.

Tom's mom and my mom took the boys to my sister's lake house this weekend. I am so glad the boys are in such good care and are having a great summer. Between Mary Ann (Tom's mom), and all my family and friends, they are keeping the boys busy and happy, and for that I am so grateful.

Poor Mary Ann didn't expect to stay away from her home for so long, either! I'm so thankful she's been so flexible that she could stay and take care of the boys and the animals at home.

Well, I know this wasn't much of an update. But, it's all I could muster today.

Thank you all for all your love and support. I can't imagine where we'd be without it.

Much love,
Christy xoxo

Saturday, August 26, 2017

Post-Op Day 18

Tom got here late last night. Harlie was so happy to see him this morning. He brought some gifts that some friends had dropped off at the house.

The mermaid pillow and the green tube thing in a pic below is from Amy Carlton (her speech therapist) and the wonderful people at Tree House Pediatric Therapy.


The Poppy troll doll is from Eva Cauble and her sweet family. I loved her card. For those of you that don't know, Harlie sung the song from the Trolls movie, "Get Back Up Again" almost every day on her way to school. So, Eva's card said that they think of her every time they hear that song. And she wrote, "You will get back up again, Sweet Harlie!"




The hospital let us borrow an iPad mini for a communication device, since she can't talk right now. She immediately made it say, "I want to eat strawberry." This was after talking about how great her mouth is opening. She definitely wants to learn to eat food, or at least taste food.


She brushed her teeth this morning and it is so great that she can open her mouth again!


Ms. Johnson is Harlie's summer tutor. She has really helped with her reading! She made Harlie this banner for her hospital room.


I can't believe that we are just a few days away from the three week mark, and I am hanging up a banner in her room with her name on it. Really hoping this next week brings much progress!

Harlie and Tom played for a bit and Harlie was more like herself than I've seen in the last 18 days. It was so good to "see" her again! But, it didn't last long. That burst of energy tuckered her out. She was so tired for the rest of the day.

They did get her up in the chair for a while. And she stood and walked a few steps to get there. So, that's good.

Tom and I went to lunch and to walk around for a while. We were hoping they were going to do her abdomen wound and trach care while we were gone, but we caught the tail end of it. They gave her Ketamine, but she started to cry in the middle of it, so they had to give her more. Ugh.

I took a look at her trach site and it does not look like it is going to heal quickly. It really looks like it has a ways to go. While they were doing all that, she started to cry again, and we could hear her. It made me so sad.  It will be better when she gets off this ventilator.

Well, that's it for today. Overall, it was a good day. It was nice to see her smile a lot and more of her personality.

Thank you for all your love and prayers!

Much love,
Christy xoxo

Friday, August 25, 2017

Post-Op Day 17

Today did not start off well. First of all, I got very little sleep. Sometimes, I just feel unsettled, and it is hard to turn everything off in my mind to be able to fall asleep. The last time I looked at the clock was 2:30am, and I woke up at 6am.

Then, shortly after I got to the hospital, the ENT team came. The cardiology fellow wanted to chat with them about Harlie's trach size.

Yesterday when Harlie was struggling and tugging while breathing, it made them wonder if her airway is big enough. You might remember when I explained that while she's on the vent they use a cuffed trach. They inflate the cuff to stop air from leaking around the trach tube. This means that the only airway she has is through the trach tube.

ENT said that upsizing her trach would be too risky right now. She needs more time for her fresh stoma and that breakdown to heal. Plus, they have always felt that her trach size is appropriate for her and there is no guarantee that upsizing her trach would yield positive results.

Of course her trach site would heal better if she wasn't on the ventilator. And we can't get her off the ventilator because her movement is limited partly due to the trach site.

Ultimately they said that if she can't breathe, then they might be forced to upside sooner than they would like. But, they would like her to go to at least Monday and reassess then.

So, the plan is to sit tight, and give her more support breathing. So, no more sprints until next week at least. Oh, and she was febrile yesterday and this morning. And her respiratory cultures started to grow something, so they had to start Zosyn (antibiotic) again. Sigh.

After the team rounded, I went to the gym. I felt so defeated. Zero progress. We are constantly finding ourselves at the same hurdles. Every solution to one problem, is the cause of another. I just feel like we are chasing our tails. What could go wrong, has gone wrong. And this whole admission is becoming a nightmare. Harlie has a complicated and comprised airway, heart and lungs. Any one of those is horrible. It is like she won the worst lottery of all time.

I was definitely feeling very down. But when I returned to the hospital after a couple of hours, her nurse (Alexandra) said they had done trach care and that her trach site/wound looked much better today! So, thats great! She also did some chest PT and gave her a hypertonic saline neb treatment to help break up her secretions. And that yielded great results. She was able to cough up a bunch, which is awesome.

Then all of this happened...

Smiles for one of our all time favorite nurses, Alexandra. She has been our nurse for three days in a row and we have LOVED having her!


I am really loving how they are not rushing us out of the CICU and into a different ICU, despite the fact that her cardiac status is good, thankfully.  So, hopefully we will have Alexandra again. 

She sat up on the side of the bed - unsupported! We laughed because she did NOT want to do this, at all.  She was not happy, trust me. But when I went to take a picture of her, she broke out a huge smile, and then went right back to her displeased self. 




I took advantage of the moment and brushed and braided her hair. 


Then, she stood and took a couple of steps to the chair!


Seriously, that girl is crazy. Things with her change so quickly. Each day is a roller coaster, within a giant roller coaster. Her course is so up and down that I just can't afford to use the energy to get too excited about something.  I have to try to maintain a more even level of emotion.  I know things could change tomorrow, or in 10 minutes. But for the moment, I feel much better about where we are. Thank goodness!

Oh, and just for fun, I'm adding another picture of those turkeys! I saw them again today on my walk back from lunch. They make me laugh.


Tom is flying up tonight, so that's great. We will be so happy to have him here with us for the next few days. Our 15 year anniversary is next Thursday (August 31), but he won't be here then. So we are going to go out to dinner this Sunday to celebrate. Then he will leave on Monday. Then his sister, Kristie, is coming Wednesday night, I think.

Okay, so that's it for tonight. It feels really good to have something positive to post for a change!

Thanks for all the love and support!!

Much love to you all,
Christy xoxo




Thursday, August 24, 2017

Post-Op Day 16

Today has been pretty quiet overall.

She's been tachypneic (fast breathing) again.  Her heart rate was increased this morning (her pacemaker is set at 80 bpm and should not be higher than that when just laying in bed). So, her nurse took her temp and she had a low grade fever.

So, no sprints to CPAP today. So frustrating. Oh, and her oxygen requirements increased overnight. This is not progress.

They wanted to get her to take a few steps today, but the timing with physical therapy didn't work out. They did get her in the chair again. And I'm told she stood and supported her own weight for a bit while transferring to the chair.

I went to get a haircut, so I was out for a bit. When I got back she was already in the chair.


She seemed fine, still breathing fast, but looked okay. Then, like five minutes later she looked terrible! She was pale and sweating and her breathing got so labored. Her mouth was opening with every breath (like a fish out of water) and all of her numbers on her vent were terrible. It was like the past respiratory distress episodes I've seen this admission.  I was stressed. I do NOT like seeing her look like that. It is awful.

A few docs came in to check on her.  One of my fave docs, Katie, came in and talked to Harlie and told her she was sorry she felt so bad and that they were working hard to make her feel better. It was really so sweet.  The respiratory therapist had to increase her oxygen and rate on the vent. So, he and her nurse lavaged, suctioned and bagged her.  At first, they didn't get anything. But after they worked at it for a bit, they finally got a huge plug out. They sent it for culture. But, her lungs are full of that stuff. And the vest would be so good for her. The vest is normally used for Cystic Fibrosis patients to help them clear mucus from their lungs. But we have one at home for Harlie and it really helped when she would get pneumonia a lot. But she can't use the vest with her abdomen issue and bleeding from her trach site because it shakes her too much.

Nothing with Harlie is easy. Nothing.

So, she is finally breathing easier and resting. She is exhausted. She is hardly sleeping at night. The night nurse told me that she only slept from 11pm to 12am and from 3am to 5am. Ugh.

So, unfortunately, I would consider today a setback. Hopefully tomorrow will be better.

Thank you for all your kind words, love and prayers.

Much love,
Christy xoxo




Wednesday, August 23, 2017

Post-Op Day 15

Hi! All is the same here. Trudging along.

Her belly packing was changed this morning. And he put the sticks in her mouth again. Five went in easy, so that's good. Might try for six tomorrow. The Ketamine works well for all that.

Her nurse tried to get ENT to come and look at her trach site while the Ketamine was doing it's job, but they couldn't get here in time.

Her trach site looks absolutely awful, and getting worse each day. When they came to take a look Harlie was not cooperative.  So, her nurse gave her Versed and Fentanyl. But, when it comes to drugs, it is like she's the size of an elephant. They said she eats through them like they're nothing. So, when that didn't work, she had to give her more Ketamine.

Her site is so bad. The ENT got all the blood clots off the top and said that once she got to the wound, it looks like it's trying to heal. I'll have to take their word for it. They changed the dressing from Mepilex to Aquacel. Hopefully that will help. They also scoped her trach to make sure that her trachea wasnt bleeding. Which it isnt, so that's good.

They are increasing her sprints from BIPAP to CPAP to three hours, two times a day.

It is now 6pm, and it has been a busy day. After rounds (around 11am) I went to the gym and worked out. Then I went back to the hotel to shower and eat lunch.

When I got back she was sitting in the chair.


After a couple of hours, we got her back in bed. Physical Therapy wants to start getting her to stand so we can work towards getting her walking. So in the transfer from chair to bed, she stood (supported, of course)! And I asked her to smile and she did. She really is hilarious. The fleeting moments of smiles I've captured are pretty much the only times she has shown emotion. Most of the time her face is expressionless.


After we got her in bed, we changed her trach ties, dressing and gown. Have I mentioned how gross her trach site is? I wish I could share the photo so you can see what I mean. I'm just afraid that most of you wouldn't read my blog anymore for fear of more photos like that. Anyway, it turned my stomach, but I had to clean it and get her more comfortable. I tried to hide how much it grossed me out because she is right there, watching me! How awful for her! I guess it's just going to take some time for this horribleness to heal. But I gotta tell you, it feels like a real kick in the ass. As if having the trach again isn't bad enough!!!

Oh, forgot to mention that I saw those turkeys again on my walk back to the hospital this afternoon. So amusing!


The social worker comes to check on me every few days. She came today and sat down to chat. She told me that I don't have to be so positive all the time and that its okay for me to admit how much this sucks.  

So, this sucks. Really, really bad. I can't possibly describe how painful it is for me to watch all she's going through.  It is so hard to be her caregiver and rise above my own discomforts and pain to do what her body needs me to do. I don't want any of this for her, for me, or for our family. It sucks all around in every possible way.  As the issues and challenges mount up, I just want to scream, "UNCLE! WE ARE DONE! HAVEN'T YOU ASKED ENOUGH OUT OF HER AND US?!" We have risen to the occasion so many times and have remained so very grateful. But the challenges still come, and more is asked of us. 

So, we can't be done. We have to keep going and I have to find the energy to be strong enough for her and me. And when this nightmare admission is over, we will go home and have to deal with the aftermath of living through a traumatic experience. And we will have to learn how to live our life with a trach again. And PTSD. 

So, now you know. 

She asked me what coping techniques I use while in the hospital. So, I thought I'd write them down just in case I forget them in the future and need to refer back to this list.

1. I focus on the positive as much as possible. I deal with the negative, but I try to keep it contained. 
2. I walk to and from the hospital and the hotel. Being outside is good for me. I told her she would have to pick me up off the floor if it was winter right now. 
3. I exercise when I can. Even if I don't feel like I have the energy, I go and the energy just magically appears. 
4. I try to have a routine to my day. Exercising helps make this happen.
5. I get a few bottles of wine and beer from Trader Joe's and keep them in the hotel room fridge. This is vital and probably should've been #1 on this list. ☺
6. I laugh as much as possible. And one thing that really helps me is watching The Big Bang Theory. I took this picture last night to remind me how funny it was. Weird that I did that and now I'm writing this list!! 


In this particular episode, Howard had been applying some kind of cream on his mom that was high in estrogen. Not using gloves, it was absorbed into his skin making him act like a woman. It was hilarious! So, he told his friend Raj that his nipples were sensitive and he asked him if he thought his breasts were getting bigger. Seriously, so funny!!

So, that's it. 

It is now 8pm and she completed both three hour sprints on CPAP successfully. So, that's progress. Her pressure sore has started to open. It was unstageable while closed (meaning they couldn't see what stage it was since it was closed). So, we'll see what it looks like tomorrow. 

She has signed "I love you" many times to me today. I think she's so amazing and I feel so lucky she is mine to love. 

I'm going to head out and get some dinner and go back to the hotel. Thank you, as always, for your unwavering support. For all of you that have been so generous with your donations, I want you to know that I am so grateful to be able to go back to my hotel room where I am comfortable and can get some rest so I can come back here tomorrow and fight another day.

Much love,
Christy xoxo

Tuesday, August 22, 2017

Post-Op Day 14

Harlie's night nurse said she didn't have a great night. Apparently she didn't really get any sleep. She was up till 4am and then finally got a little then. Poor girl. I can only imagine what she's thinking and feeling.

When I got in this morning Dr. Haas had just finished packing her belly and was able to put five sticks in her mouth again. It's hard to tell how long they will have to pack her belly. Hopefully, he will be able to put a little less packing material in there each day. But, today he had to use the same amount as yesterday. It drained a lot yesterday and the top dressing had to be changed twice (once during day shift and once during the night shift). We'll just have to see how it goes.

We were able to put her in the chair again this morning. So, we tried to wash her hair. They have this shower cap thing that you heat in the microwave, put on their head and scrub away. It didn't work that great. But I hope she felt a little better.



They started to try sprinting her settings on the vent. So, when she's on a rate, it basically does all the work. But, when it is on pressure support, she takes her breath, and it helps her (I think that's how it works). So, today they put her on pressure support for 2.5 hours. I think she did ok.

Her trach secretions were bloody again today (they were a few days ago). And when I suctioned out her mouth, that was bloody, too. Hoepfully that's nothing. She is pooling in her mouth because her trach tube is cuffed and she's probably having a hard time swallowing. We are not used to a cuffed trach and this is the longest she's ever had one, so I don't really know.

She is sleeping now and looks pretty comfortable. She's back on a rate so hopefully she's getting some good rest.


The infectious disease docs came by last night and this morning. Sounds like they will want to treat her with IV antibiotics for 10-14 days (for her belly infection), and I think that started 3 days ago. That might be hard on her IVs. But they are reluctant to put in a PICC line because they don't want another infection source. I guess her IVs are going to have to guide us there.

In order for her to go home (which is not even being mentioned) three things (as of right now) have to happen (in my opinion):

1. She has to come off that vent and get to trach collar. With only being able to sprint to pressure support today for 2.5 hours, that feels really far away.

2. Her belly needs to be healed enough that it doesn't have to be packed anymore.

3. She has to be off all IV antibiotics and medications.

So, another week at least, based off IV antibiotics alone.  But more likely two weeks, in my opinion.

I had to get a new hospital badge today, since my two week one expired. He asked, "Is a month okay?" Gosh, I certainly hope so.

I am getting my hair cut on Thursday and I am pretty excited about that. It is way over due. Its a little ballsy for me to go to a complete stranger. But, desperate times call for desperate measures!

Tom is flying up Friday night and is going to stay till Monday.

It is 4pm and the occupational therapist just came by to work with Harlie. It was all I could do to not cry. Still struggling to be honest. It was so painful to watch her work so hard to put those buttons in.


I just can't believe that this is where we are. I keep telling myself that it is only temporary. But it breaks my heart just the same.  It is just so painful to watch her struggle and work so hard for the smallest of movements. This girl was doing exercise videos and jumping in the pool less than a month ago. Sorry, I can't upload the video. It says it is too big. I'll have to work on it later.

Soon after I posted the video (that I can't share here) to Facebook, these were delivered...


They were freshly baked and still hot. My friend, Ann, sent them. She said that after watching that video she thought of this...


So, I ate a cookie (or two). Thanks, Ann!

It is 6:30pm now, and they are going to try another sprint to pressure support. Hopefully that will go well.

Tom and I video chatted for the first time today. We are so behind the times! I don't know why we haven't been doing this?! Harlie lit up when she saw Tom and Rooney! And when Cooper and Murphy got on there, she air punched them! So funny!!! Those little glimmers of Harlie make me so happy! She signed "I love you" to all of them, too.

It is 8:45pm and she finished her second sprint of the day. She did ok, but she was breathing faster while on pressure support. They put her back on rate for the night, so she can rest. I can't believe how long it is taking her lungs to heal.

Okay, that's all I have for today. Thank you, as always, for all the love and prayers!

Much love,
Christy xoxo

Monday, August 21, 2017

Post-Op Day 13

Today marks two full weeks since we got here. And there's still no end in sight. Kinda crazy.

Last night I was thinking about where we are and what we are dealing with. So, I tried to make a list.

1. Jaw surgery. We still need to get her mouth moving so we can try to prevent her jaw from re-fusing. It is very hard to make her do another thing that causes her pain. But if we let it re-fuse, then she's gone through all of this for nothing and we'll have to do it all again. Although, there is chance that could happen again anyway. Let'shope it doesn't.

2. New Trach Site. I guess the weight of the vent has put some pressure on the area right below her stoma (the hole that the trach is in) and it is bleeding. ENT called in wound care to help with that.

3. Belly. On Saturday it became apparent something was amiss with her fat graft site. They drained it Saturday night and have packed it with gauze, as it will heal from the inside out. They have changed the gauze once each day and will continue until it stops draining, I guess. I watched both times and it is neat and gross at the same time. I just figured if she has to go through it, I should have to see it. They made the incision in the belly button, so that's where the gauze goes. Let me know if you want me to describe it in detail. Haha!

5. Lung issues. Her lungs are still not well enough for her to breathe on her own yet. This is progressing at a very slow rate (the slowest I've ever seen). I'm sure it's compounded by getting a new trach and having to be kept under anesthesia for five days.

6. Pain Management.  They are on top of this with Oxy and Tylenol scheduled around the clock. And are able to give Morphine, Fentanyl, Versed and Ketamine for pain or sedation (for her belly wound treatment) as needed. Eventually, we will have to get her off all that stuff. But for now, she cannot get better if she's in too much pain. The belly site is what took us back a few steps. I might've already mentioned that when she was in pain she was breathing more rapidly and taking shallow breaths. That will not help her lung situation. Plus, she hasn't peed all day, and that can be another sign that she's in pain.

7. Pressure Sore. Still trying to keep her moving so it doesn't get worse.

8. Tooth extractions. Ten teeth were extracted, two were buried permanent teeth, and eight were baby teeth. Then one permanent tooth fell out. Dr. Haas put braces on the front bottom teeth to help stabilize them and help them heal. Today he looked in her mouth and said the extraction sites were "healing nicely." First time I've heard those words this admission, so I will soak that in.

I think that's it. I hope I didn't forget something.

As far as what's happened today...

Physical Therapy came and got her in a chair. Now that we know how painful her belly is and was, I thought her wheelchair would be too uncomfortable. So her nurse went and got a nice reclining chair. At first she didn't want to do it. But once she was in the chair, she hung out for a while.


She tried to smile!
Dr. Haas came around 10:30am and changed her dressing and gauze in her belly. And he stretched her jaw. Since she was on Ketamine (feeling no pain) for the dressing change, we took advantage of the situation and he was able to go up to five sticks! So that's great. She kept the sticks in for at least 30 minutes.


Speech therapy came by, but she was still a little zonked from the Ketamine. So they are going to come back tomorrow.

Infectious Disease came and said they are still treating her for the bacteria they found in her blood on the 12th. They haven't gotten any results from the blood they took from her belly Saturday night. But since she was already on antibiotics, that makes it harder for new stuff to grow. So, they are going to continue to treat her with broad scope antibiotics for a while. Not sure exactly how long yet.

When they rounded on her this morning, I asked them if they could help me out regarding this whole trach training and education nonsense. I was running out of politeness, and like my friend Ann said, it is like salt in the wound. And this has nothing to do with the people, they have been nothing but nice. But, hospital trach care is very different than living with one. And I did for nine years, shouldn't that give me some street cred?? ☺ I also told them this kind of information is neither applicable nor helpful (and I'd go so far to say that it feels insulting):


She is almost 11 years old!! Been there, done that, and I have the grey hairs and PTSD to prove it! They were very understanding and said, yes, they would take care of that for me. Whew!!! I am so glad. I thanked them profusely and promised I would ask questions when I needed to.

They also said they were not going to do any trach collar trials again today. She's still not ready.

Occupational therapy came by and got her working on an iPad. So, that was good. After her nurse changed her top belly dressing (it soaked through in just a few hours!) and the wound care nurse and I changed her trach ties and dressing, we set her up to watch a movie on her tablet.


Sandy is heading back to VA tonight. I am going to walk with her back to the hotel to get her stuff and an Uber and then I'm going to go for a run while I'm out.

So, again, another day when nothing bad happened (hopefully that won't change) and small improvements could be seen. She still barely nods/shakes her head, but she's fighting the nurses and doctors more, so that's good.

Apparently, there was a solar eclipse today. I had zero interest. Hard to care about other stuff when I'm here and focused on Harlie.

It is now 7pm. I went for a run, showered and returned to the hospital. When I got back I said hi to Harlie, and she signed, "I love you!" Can you believe it?!  So, that's awesome. I'm super happy about that.

No new setbacks, and I feel like I'm starting to see a bit more of her each day. We are getting there, even if we are crawling.

Thank you for your continued love and support. I appreciate it more than you'll ever know!

Much love,
Christy xoxo


Sunday, August 20, 2017

Post-Op Day 12

After we left last night, they did the ultrasound on her belly and found fluid (blood). Plastics came and had to open it up to drain it. They had to give her Fentanyl and then Ketamine.  They packed it with gauze and are going to come and do it again some time today. 

The area under her trach site is infected. But the Vanc and Zosyn should cover that, I think. 

She is still tachypneic today. So, another day with no trach collar trials. Everyone agrees that she is not ready. That right lung still looks collapsed. They are thinking that she is breathing fast and shallow because she is in pain. So, they are putting her back on Oxycontin around the clock and Morphine as needed. 

It is 10am and she crossed one leg over the other, so that is great! Funny how we can be happy about something so tiny. But it is movement, and I'm happy about that.  


I changed her channel for her and found Teenage Mutant Ninja Turtles, and she smiled! That was great to see. 

She lost an IV today, so they had to give her another one. Depending on how long she swill need antibiotics, they might give her another PICC line. But that's a discussion for tomorrow. Still waiting on the cultures to come back. 

At around noon, plastics came to change the dressing on her belly. They had to give her Fentanyl and Ketamine again. She's had a lot of drugs lately. But they are needed. 

Dr. Haas came to stretch her jaw again. He came last night, too. And he had the weekend off! But she does better for him. And he got them in and it has now been over an hour and she hasn't taken them out yet. He'll be happy to hear that. He'll probably try four sticks tomorrow. 


Oh, I forgot to tell you that on our walk into the hospital this morning, we came across four very large turkeys!



Isn't that crazy? Boston drivers aren't the most friendly, or patient drivers I've ever seen, so I'm shocked that someone didn't run them over. Those turkeys are lucky it is Sunday! 

Anyway, I had a hard time sleeping last night, so I feel more tired than usual. I'm going to wrap up this post for today and try to close my eyes for a bit. Hopefully the rest of the day is uneventful. Although you never know with this girl. 

No progress again today. But, no new setbacks, either. So, that's a plus!

Thank you for all the love! I have to tell you that knowing y'all are looking for updates motivates me to write everyday. So, thank you for caring so much! 

Much love, 
Christy xoxo