Post-Op Day 36

When days go by without me writing, it is hard to remember what happened and on what day. But writing everyday just isn't possible right now. I can tell I am feeling more run down each day. But I feel bad even saying that because I really cannot imagine how Harlie feels.

Even though she is doing great, all things considered, she is still so very weak.

Her lungs are still healing. And she's on a lot of oxygen.

On Tuesday, they decided to try her on trach collar all night, instead of putting her on the vent. So, Tuesday night was her first night without the vent in five weeks.  They also wanted to get her dressed since she's getting up for PT. So, I walked to Target and got her some clothes. I had none here from home.

I got her a Lego set while I was there.

Sally came up to visit Tuesday. And she brought me dinner (homemade meatloaf and sides) and a microwave. The story about the microwave is that the microwave in the waiting area of the CICU must be replaced. It is awful and tiny. And between the family refrigerator, and the yucky microwave, it makes eating here so much worse. So, I asked my social worker if I could get a new one donated to replace it. Next thing I know, Sally shows up with one. It was donated by our friends Aimee and Steve Connolly! Thanks Aimee and Steve! So many parents thank you!!

Sally and I walked to lunch at one of our local favorites, the Pub and the People.

When we got back, Sally made a deal with Harlie that we would do squats as long as she was working. We did a lot of squats. Harlie got a kick out of it.

On Wednesday, Brandy came to visit. For those that don't know, Brandy has been Harlie's home health nurse since Harlie was five months old.

ENT came and I did my first trach change since before Christmas. Can you believe that? Her trachs are supposed to be changed weekly. The last time I changed her trach was December 18th. Then, our local ENT changed her trach on January 8th. It wasn't changed again till her scope under anesthesia on February 1st. And that's when Dr. Preciado said he had to do the stoma revision and we scheduled it for the 21st. Crazy. Anyway, it was such a breeze to change. What a difference from the way it was! Ahhh, I can't tell you what a relief that is! Whew!

We had talked about transferring to rehab on Thursday. But, on Wednesday during PT, she had a bit of a rough time. Here is a clip of her working.

After she walked out of the room, she went about 10 feet and she desatted pretty bad. Mandy let her get back in the wheelchair and took her back into her room. It took about 8-10 minutes for her to fully recover.

Her chest x-rays from this morning (Thursday) looked a bit worse than yesterday's. So, maybe she just needs a little more time to adjust without the ventilator.

Because of that, and her high oxygen requirement, they want to give her a little more time before transferring her to rehab. So, the plan is that she will be moved to the floor tomorrow (Friday) and will stay in the heart and kidney unit through the weekend. And if all goes well, she will be transferred to rehab on Monday.

Dr. Preciado came by to see her today. He told me that he was in Brazil last week for a conference on complicated airways. He said he presented Harlie's case. He said there was a lot of discussion about it. In a weird way, that's pretty cool. If you're going to have a crazy airway, might as well have a lot of doctors talking about it. Seriously though, it is comforting to know that he seeks out other professional opinions. More minds...

Mary Ann is going to bring the boys up for Easter. We are still working on what we're going to do for Easter. But, at least the boys will get to see her and interact with her. I know they all miss each other so much. For five weeks, plans have been so unclear. Now that I have a better idea of where we'll be and when, I can finally visualize it, and I can't wait for us all to be together!! I think the boys will be so happy to see how much better she's doing.

I think I am finally able to breathe a little. So many things are so much better now.

I did this puzzle on Wednesday. I don't know who sent it to me, but thank you! It was a fun one.

And when I got back to the RMH Wednesday night, I got this package. I don't know who sent it to me, so thank you whoever you are! It has some great goodies and gift cards in it. Yay!

And I also received some tea and honey straws. Which I loved having the other night! So, thank you whoever you are!

I must say that we are the luckiest people to have the amazing support we have. I just can't possibly thank you enough for loving our sweet girl, and the rest of our family the way you do. So many of you go above and beyond for us and we are more grateful than words can express. I'm sorry I can't respond to all your comments and kind words. Please know that I love them and soak up the encouragement and love from each of you.

Much love,
Christy xoxo

Post-Op Day 33

Hi! I'm so happy to report that things are progressing very well here!

Harlie is making huge strides every day! It really is amazing to watch. I think the team here is pretty impressed with her strength and determination. This girl is motivated to move and doesn't let a little (or a lot of) pain get in her way. I'm more proud of her than words can ever say!!

So, to recap the past few days...

On Friday, Tom came up for the weekend. Our friends, Mike and Laura, also came through town. We normally spend some or all of our spring break with them, depending on how our breaks align. The past few years we've been going to Charleston or Myrtle Beach with them. So, they stopped in DC on their way south for their spring break. They got a hotel room close by. And, they got us a room so we could hang out together while they were here. We walked to Union Market which is a very cool place with lots of dining choices. Then we went back to the hotel to play cards. It was great!

They left Saturday morning, but they booked our hotel room for the rest of the weekend for us! How nice was that?

Then, on Saturday, we were able to get Harlie outside for a bit. I just can't get over how much progress she's making! It is so hard to believe that exactly three weeks ago (on Saturday) we almost lost her!! Just look at her now!

Isn't she amazing?! When the team rounded on her that day, their guess was 7 to 10 more days in the hospital. Whew! I can see the light at the end of the tunnel now! She is still going on the vent at night. So, they are working on weaning her to trach collar at night. Her lungs are getting better, but she still has a lot of secretions and still requires oxygen.

On Friday, the physical medicine and rehabilitation doctors came by. We chatted for a while. They are recommending that she go straight from here to inpatient rehab, which is around the corner. While I am not excited about that, if it is what is best for Harlie, then we'll do it.

I spoke with a friend who knows her stuff about therapy and she agreed. While Harlie is doing great, her muscles and endurance have taken a huge hit and she is extremely weak. And she never got back to her baseline in strength from her hospitalization in Boston. Just the effort to get her into the car and to outpatient physical therapy will be exhausting for her, and might wear her out before she even gets to start therapy.  So, we are going to start with inpatient and see how it goes. Once we get her home we will do a more intensive PT program, which will be great.

So, at this point, I have no idea what that looks like, when we'll be transferred or how long we would be there. Time will tell.

On Saturday, we went to a late dinner with our friends Mona and Chris. That was a lot of fun.

On Sunday, we got Harlie outside again. It is so wonderful to be off all of those lines and be free enough to get out of the room!

Mona came and picked me up for lunch and a little retail therapy in Georgetown. So, that was nice. Thanks, Mona! And one of Harlie's nurses, Caylee, came by to visit.

Today (Monday) she got to go and paint a flower pot and color. Our nurse brought me a calendar of events for kids. I showed it to Harlie and asked her if she wanted to paint and color. She answered yes. Then I showed her that tomorrow is trophy day, and would she like to go to that, too. She said yes, and then said, "where's going home?" She meant where is that on the calendar. I told her that she has to go to another place to get stronger first. Then she covered her trach with her finger and said, "Oh, come on!" Then she grabbed her empty water cup and crushed it in her hand to show her frustration, while being funny at the same time. It is awesome to see her joke around, even when she's disappointed. Although I'm sure she knows she's not ready to go home. She's smart like that.

She got PT and OT today. She still needs a lot of support to stand, but she's getting there. She took a few steps with a walker today, with lots of support, of course.

And she painted a flower pot.

So, overall, she is making huge strides forward. I am so proud of her! She is such a hard worker!

Thank you for all your continued love and support. It is so appreciated!

Much love,
Christy xo

Post-Op Days 27 and 28

I'm having a hard time writing (and thinking) right now. The patient next door to Harlie coded today. I heard the all too familiar sounds of people running and the latch opening the double doors. There was an alarm, but oddly enough, I don't remember what it sounds like. Not from a few minutes ago, and not from when it was for Harlie.

I had a definite reaction to the code. And I had to work very hard to keep myself together. Tom happened to call right then, and he distracted me, which was good. After things settled down, my social worker came to check on me. Which, I'm glad about, because I was having a hard time. She said that's PTSD. And it sucks.

Oh, this is no way to live a life. I don't want this for Harlie or for us anymore. I want to go home. I want the life we had before August. I want her and me, to be free from hospitals and surgeries and unexpected complications. But, I know that's not to be. At least not now. Somehow, we have to keep going. And continue to survive this crazy, effed up life.

So, on to the update...

Yesterday, it snowed. I rather enjoyed my two-mile walk into work, I mean the hospital. ☺Snow seems to make things seem more peaceful. There was way less traffic, so that was really nice, too.

Harlie spent a lot of time in the chair, on trach collar. She stood for 10 seconds, 2 times. Her little legs shook so much!

This is her standing. 

I forgot to tell you that she has developed strabismus. Basically, her eyes aren't tracking the same. Her left one seems weaker. The opthamologist said that it can be from the medications and/or from being paralyzed/sedated for over three weeks. It can stay that way, or get better/stronger in time. So, hopefully, it will get stronger and resolve itself.

After that, she slept the entire day. She's having a hard time sleeping during the nights. So, we tried our best to wake her and keep her awake so she would sleep last night. But, we eventually gave up. I wasn't so keen on bothering her in the first place. And she must be exhausted! So, we put her back in bed, and let her rest. She ended up sleeping till 4am this morning. So, that's good.

Today, as soon as I walked in, they were rounding. They said that ENT and wound care were on their way to do a trach change and do some wound care.

They gave Harlie some Ketamine and did their thing. She has a foreign body granuloma. They left a stitch in, so her body is reacting. It looks pretty gnarly. But, other than that the wound is getting better, overall. The trach has definitely migrated up. But there's nothing they can really do about that. They changed her trach just fine and cleaned the wound. They said they want me to do a trach change with them there, so I know I'm fine with it once we get home.

So, the word "home" has finally been spoken. I don't know when, of course. Right now the following needs to happen:

1.  More wound healing. This stitch has to work itself out, or they have to help it out, at some point.

2.  Her lungs have to get better. She desats immediately without oxygen. At one point during her wound care and trach change, her sats got down to 57.

3.  She needs to get stronger.

I'm guessing another week or two? Time will tell.

After she woke up from the Ketamine, PT and OT came and worked with her again. Today she stood up for 20 seconds, 3 times. So, that's good.

Standing is hard work!

Ahhh, sitting in the chair, with the tablet. 

She got in the chair and stayed on trach collar for most of the day. After the code next door calmed down, PT and OT came back to put her in the bed.

She watched a movie and then fell asleep. I think they are going to put her back on the vent now, because her sats are getting low. Maybe she's had enough of breathing on her own for the day.

Well, that's all I want to write for the day.

Thank you for the love and prayers. Still soaking them in, especially during the harder times.

Much love,
Christy xoxo

Post-Op Days 24 - 27

Sunday, March 18

Saturday night, after I posted my last blog post, Harlie made me very nervous. Her trach was not secure and you could see it was so close to coming out. And even though he stitched the wound above the new stoma placement, you can see the trach is migrating up. The stoma was at the lowest point of the wound. There is more wound under the stoma now.

The ENT resident came to look (he's seen her before) and after looking things over, he called one of the fellows. He ended up securing it with tape, for now. They are still working on finding a better solution. In the meantime, I'm trying to keep my PTSD at bay.

The feeling I get in my stomach when I think about all this is horrible. I'm trying so hard to not be angry that this happened (the emergency trach back in August). But it is getting very challenging. Being angry isn't helpful. But, damn, life is so much harder now. And it is heartbreaking to see her so miserable.

Saturday night/Sunday morning she spiked a fever of 103-something, she has a lot more secretions and her chest xrays lead the docs to think she has pneumonia. She is more puffy and miserable, in general. So, they put her back on another antibiotic.

Tom found a hair salon and if you can believe it, I got an appointment for Sunday.  So, he took me to get my hair cut and colored. So, at least I have that going for me.

She was awake all day on Sunday. And, the night nurse said she was awake a lot of Saturday night. Despite how tired she looked, we managed to get a few smiles. We could definitely see more of her wonderful personality. Man, we miss our amazing girl so much!

But, when we left that night, she cried sad tears. That was so hard. And it makes me cry just thinking about it. She said clearly through her silent sobs, "I want to go home." It was so, so hard leaving her that night. Sometimes, I feel like my heart just can't handle anymore. But, life doesn't give me a choice.

Tom and I went to dinner that night and he decided to stay the night and leave to go home early in the morning. It is so hard for him to leave when I/we are sad. He is still really good at making me smile...

We thought she would get a good night's sleep after being so awake for the past couple of days, but she awoke at 2am, and didn't fall back asleep. Apparently, she is totally fine hitting the nurse call button and asking for a movie, or to be suctioned.

On Monday, a nurse we haven't had yet, came by to chat with Morgan, our nurse and she told us both that she was walking by Harlie's room the other day. She just happened to look in, and Harlie got her attention, and asked her to help move her up in her bed. Then, in the process of doing that, Harlie told her she wants to be a doctor. Can you believe that?  She is so funny!

Tom left early in the morning on Monday. And I went in to the hospital early.  She started vomiting a bit sometime during the night. She had a nissan when she was about 18 months old and has only vomited a few times since. She is having serious GI issues due to the three weeks plus on paralytic and sedation medications, plus all the pain meds.

This has been an ongoing issue since surgery, of course. The team has been trying everything, and we just can't seem to get her any relief. So, I asked them if we should get an x-ray, just to be sure all is ok.  I'm so afraid something out of the blue is going to sneak up and scare us. They got an x-ray in the morning and then came again later to get another one, but a side view. I worried about it most of the day. I just knew they saw something concerning on the first one, which is why they got the second view. I try to tell myself to chill out. But, that is much easier said than done. I have my fears based on years of experiences, or PTSD. Turns out, everything is fine, she just needs a lot more help getting things moving along.

They tried getting her off the vent and switching her to trach collar a few times. Getting her on trach collar will really help her trach site heal. The vent tubing is just so unforgiving.

ENT came and changed her trach ties from the twill ties to the standard velcro ones. They put some protective dressing  on her neck before they put the twill ties on, so that had to be removed first. She was not cooperative at all. She was moving way too much and he couldn't do what he needed to do safely. So, they had to give her sedation and pain meds. Several times. But she still kept fighting. So, they had to give her ketamine. Twice. That girl! As soon as he was done and the ketamine wore off (fast acting), she woke right up and stayed awake all day, despite how tired she was.

Tired eyes!!

Speech therapy came by and tried a speaking valve (PMV). She tolerated it for about 10 seconds. She seemed totally comfortable and didn't try to remove it. I only got her to say "hi" but she was super tired. The only reason we didn't go over 10 seconds is because she needs oxygen and she was desatting without the trach collar.  I am very hopeful that when she is better and stronger, she will be able to tolerate it just fine. If she could go home with her voice, that would be amazing (she hasn't had a voice since the emergency tracheostomy in August).

Later that night, before I went to bed, I called her nurse to check on her. She told me that Harlie rolled over while sleeping on the vent and must have injured her wound again, because she bled quite a bit from her site. Ugh! This site is never going to heal if it keeps getting disturbed! So, the attending put her back on sedation for the night. ENT came by and packed the wound with some kind of dressing.

We need to get her off that vent asap. But, that is not up to us, it is up to her lungs.

Today (Tuesday) after they tuned off the Propofol and let her wake up, they put her on the trach collar. Then they got her to sit up on the side of the bed. Once her feet were on the side, she started to try to scoot off, to stand up. PT and OT  had her, so they helped her into a standing position. Needless to say, she is incredibly weak. Her whole body was shaking. She is amazing and didn't let that stop her from wanting to get into the chair.

So many docs and nurses stopped in their tracks when they saw Harlie in the chair. It is so wonderful to have them be so happy to see her out of bed!

She wanted some water and refused to let me help her hold the cup. She was very shaky, but did it without spilling. She is so determined!

She spent about four hours sleeping in the chair. She is wiped out today. She was off the vent for most of the day. Her nurse (Erin) asked her physical therapist to come up with a vest thing to hold the vent to her chest when she sleeps. That way she could move more without hurting herself.

This is what they came up with...

Pretty cool! She looks more comfortable, which is nice to see. So, good job, Erin! Her nurses (and docs) have all been so wonderful. To be stuck in a hospital, this one is a good one to be stuck in.

So, her recovery isn't consistent. In some areas she progresses, while in others she regresses. It is a crazy dance. Tomorrow will mark four weeks here. I feel like the hospitalizations aren't separate times. Instead, they build on top of one another. When we arrive, we are still carrying the last one with us. It is no way for a little girl to live. Yet she does, usually with a smile. Even when she's miserable. And she makes those of us around her smile, too.

Thank you for continuing to think of her, and our entire family. I promise you, we feel the love and appreciate it so much!

Much love,
Christy xoxo

Post-Op Days 22 - 24

Hi! I'm so sorry for the delay in posts. It has been pretty busy around here.

Thursday, March 15

My friend, Ann, flew from Arizona to visit me Wednesday and Thursday. For those of you who don't know Ann, you can read about her here. Once you know who she is, you'll get why this was such a big deal to me. Having her in front of me to talk to for hours and hours was absolutely wonderful. She made me feel so important and so special. And to feel that way is a pure blessing, especially during a difficult hospitalization.

Harlie sat up and smiled for a couple pics. That girl is so amazing. She really is so incredibly strong. 

Thank you so much for going to all the trouble and expense to come visit, Ann! Love you!

Friday, March 16

Today her ENT removed her nasal ET tube, and switched the ET tube in her stoma to a trach. It is a stock trach for now, while we wait for the custom ones they ordered to come in. One of the ENT fellows said they were going to "Macgyver" it. I love it. Let's call it what it is.  She also came in the other day and called Harlie, the Harlinator. Haha!

Anyway, it went really well. Dr. Preciado scoped her through her nasal ET tube and said her airway looked really good. He put a 5.0 trach in and they used twill ties to secure it around her neck. Surprisingly, they seem to be working ok for now. While her stoma is still lower than I wish it were, it looks better than I was expecting.

Her skin where they sutured the ET tube to her chest, took a beating. Her skin has gotten so sensitive to invasion.

Attaching the vent to her trach puts a lot of weight on it, and can cause too much pressure to the wound.  So they immediately started working to get her off the ventilator and onto trach collar.  She has done some sprints and has done well, overall. She is VERY sleepy still.

I think her eyes look a little better. I'm relieved to see small improvements there. Her face is now tape free for the first time in more than three weeks. Ahhh! That must feel so much better for her.

This morning we discovered that her BAHA (bone anchored hearing aid) abutment (the metal piece that is in her skull that the hearing aid clicks onto) was really bloody. It bled all day. It is so strange. We are guessing it has something to do with all the swelling.

Saturday, March 17

Today her lungs have some atelectasis (collapsed area). So, no trach collar sprints today. I am constantly reminded of our hospitalization in Boston, and find myself comparing the two, often. I remember it took a while to get her off the vent (maybe 3 weeks?). It was a constant dance of one step forward, two steps back. And that was after only eight days on the paralytic and sedation. This time around, she's coming back after 23 days on sedation and a little less than that on the paralytic. Crazy!!

She's had brief moments when she wakes and she communicates purposefully. And she's had some moments where she seems confused, like she's dreaming or something. I cannot imagine waking up after what she's been through. Even though she smiles for me on occasion, I know she feels like utter crap.

Tom came up yesterday afternoon. It is so much better when he's here. Oh, her BAHA stopped bleeding. Well, I guess I should say the area around her BAHA stopped bleeding. So, that's good.

Well, that's it for now. More later! Thank you so much for all the thoughts, prayers and gifts! I'm loving the love!!

Much love,
Christy xo

Post-Op Day 21

Hi! All has been pretty quiet the past few days. I was feeling very low for a couple of days. But, I am feeling a little better now. I just needed some time to switch gears and figure out a way to make all of this better in my mind.

It has been hard to hear the docs and nurses say that certain things look great. Nothing about any of this is great. We aren't supposed to be here at all.

But, I get where they're coming from. Take her ENT for example. From his perspective, he was handed a mess and he has done the best he could. Then more things (out of our control) went wrong. He again, did the best he could and had to take a very unstable airway and make it stable. He had to take a gaping wound and make it close.

It turns out that because of how the wound looked on the outside, they all fully expected for the cartilage graft to be equally bad. They were all very pleasantly surprised that the graft was doing well. If the graft was as bad as the outside, this whole thing would've been for nothing and he wouldve had to start over.

So, now I get it. That graft looks great. The outside, not so much. But, this is better than the other way around. In time, I'm guessing we might be able to improve the outside.

The bottom line is that it really doesn't matter how much I like or dislike how things stand. There's nothing I can do to change it - for now.  I have to be patient and let them trouble shoot and figure things out. And when they are "done" I need to feel comfortable that I can manage her airway safely at home. So, we will cross that bridge when we get there.

In the meantime, I hope that when all of this is said and done that she will be okay, with no permanent side effects/damage (like to her eyes, or her trachea). And I hope that she can talk. If she can talk, and we can hear her voice again, we would be so happy. We have so missed her sweet voice!

And she is making some sound. Today, I heard her call, "Mama" from the back of the room. And that's with a lot of stuff in her trachea.

She's been very sleepy the past two days, with very little interaction. But, she's pretty uncomfortable, so I'm okay with her sleeping through as much of this as possible. The plan right now is to take the nasal ET tube out on Friday (she will be so happy about that) and change the ET tube in her stoma to a trach. I'm anxious to see how this turns out.

The exciting news around here is that my dear friend, Ann (Jack's mom) flew out to visit me from Arizona today! Can you believe it?!  She lost her sweet Jack four years ago. And it was Jack that brought us together back when Harlie was a baby. It is amazing to see her and talk her ears off in person!! But, we forgot to get photos today. We will have to do that tomorrow.

Okay, must go. I probably won't be able to blog tomorrow. So, I'll let you know how Friday goes.

Thank you for all the love and prayers. Oh, and I received a fantastic Harry and David box this morning! It didn't have a name, so thank you to the sender!

Much love,
Christy xoxo

Post-Op Days 18 and 19

Hi! Yesterday (pod 18) was a good day. She was awake for a few minutes and it was wonderful to see her and interact with her again. I should've blogged yesterday, when I was happier.

Life as a special needs parent is an emotional roller coaster. The highs are so high. But the lows, well, they are so very low.  Sometimes, you can experience both within days, hours or even minutes. Trust me when I say it is not fun like a real roller coaster. 

Saturday night was when she first opened her eyes. I can't remember when they stopped the paralytic. But, they have to maintain the sedation to keep her from waking up too much.

She signed "TV" and somehow, she managed to say "wet" to Tom. I have no idea how he understood her. She has two tubes in her trachea, and one of them has an inflated balloon to fill any remaining gaps in her trachea to prevent air leaks. Regardless, it made us look around for what she could be talking about, and we found that her feeding tube came open, and formula had leaked in her bed. Seriously, that is incredible.

The next day, Sunday, she was awake a few times throughout the day. Here are the amazing things she did:

• Helped her nurses change her diaper by communicating that it was wet, and by trying to lift her hips up during changes. She also would lift her arm when they needed to access her lines, or when they needed to untangle/change them. They kept on exclaiming how helpful she was. And this is while she is on sedation and a bunch of other meds. 
• She answered a lot of yes/no questions. 
• Someone came to look at her eyes and she was cooperative with her. I'm not sure why her eyes are still so swollen. But, I hope they start to show some improvement soon. 
• She nodded yes, that she wanted us to put on a movie. And then we called out the options until she nodded yes again. 
• She cried when we mentioned Mabel. She clearly misses her.
• She signed "I love you" and smiled for a couple of pictures. 

I just can't tell you how incredibly wonderful it was to see her and her amazing personality again. For a little while, I started to feel like somehow, one day, everything was going to be okay.

Then today happened. Nothing major. She was asleep all day, except for brief moments when she communicated that she was wet and she signed "hurt" and pointed to her tummy.  She shook her head no, when asked if she wanted us to start a movie. She signed that she loved me.

But, it was just a harder day in general. She didn't have that same spunk. Which is totally understandable. She was probably exhausted from yesterday.  And I heard today that they are planning on taking out the ET tube from her stoma, and replacing it with a stock trach on Friday. Since they don't expect to have a custom trach in by then, the plan is to secure the trach by suturing it directly to her skin. 

Maybe it was the thought of that, that made my stomach hurt. Maybe it was just the utter fear that maybe things won't be okay. I don't know. But that's when the low of lows happened.

I don't see how they are going to be able to attach a ventilator to a trach that is sutured to her skin, without hurting her skin. Maybe they have a plan for that.

Maybe that's a lot of my issue right now. I am experienced in trach care. And I can't visualize the next step, or the step after that, or the step after that. That is excruciatingly difficult to live with, and be patient while they figure it out. And we can't even think about going home until she has an airway we can safely manage at home.

Normally, I am really good at finding the positives on my own and accepting whatever changes in challenges we've been dealt. But, I'm having a really hard time doing that right now. I want so much more for her than what is happening right now.

I look at her and can't help but think we've asked too much of her. It just isn't right.

Okay, I need to wrap this up. It is late. Oh! I received a puzzle over the weekend. I have no idea who sent it to me. But, I started it yesterday and finished it today.

It was a good one. Thank you!!!

Thank you for all your continued support and love. I really do appreciate it so much.

Much love,
Christy xo

Post-Op Day 16 - Scope and Post-Op 17

Yesterday (day 16) was rough. They took her into the OR to do the scope and get a good look at her trach site.

We sat in the surgical waiting area and played cards while we waited. After about an hour and a half, Dr. Preciado came and got us.

I'm having a hard time remembering what he said right now. It feels like it was so long ago. The bottom line is that she needs another week of healing, at least, before he can pull out her ET tube. I was not surprised.

And because of the wound at her trach site, he had to put an ET tube in her stoma, instead of a trach. And he stitched the ET tube in several places on her chest to make it more secure. This is temporary, so it can heal and be more stable while doing so.

I think because of the wound he was forced to move her stoma further down. While he told me about it being further down, it still caught me off guard. I couldn't help it, but it made me cry. I am trying to focus on the here and now, but in the end, I have to be able to manage her airway once we get home. And that just looks really scary right now.

This is how it is supposed to look...

See how the hole is in relation to the trach ties? They are pretty much in a straight line.

But this is how low her stoma is now...

So, you can see that the trach ties have to go around her neck, but the hole (stoma) is way lower than her neck. They are going to have to work with Shiley, the trach company to see if they can make a custom trach for her.  It will have to be shaped in a deep v so the trach ties can go around her neck.

Having to be trached is bad enough. Needing a custom made trach is adding insult to injury. Every time I turn around, something has to be so unusual.  I'm pretty sick of it.

And then I get to hear people tell me that her wound looks "great" and that this airway is so much more stable and better than the way it was. I get that they are trying to make me feel better and help me be positive.

But, it is like having to move from a house that you loved to a crummy, run down house that you hate and being cheerfully told, "But the toilet flushes just great!" So, I'm supposed to be happy?! I don't want to be here! I don't want any of this crap for our sweet, innocent little girl who hasn't done a thing to deserve any of this. Can't something, anything just go well for once?!

I think the plan at this point is for them to work with Shiley on a trach design this week. But, it isn't going to be here in a week's time. And she can't be fully awake with two ET tubes. So, I don't know how much longer she'll have to be kept sedated.

They turned off the paralytic (kept sedation on) to let her move a little. She woke up for a little while and opened her eyes. She even tried to talk! And she signed "TV". That girl!! I don't even know if she can see. She has so much ointment in her eyes. I asked her if she could see me, but she didn't answer. While it was wonderful to communicate with her, it was also heartbreaking. I wish we could just pick her up and squeeze her tight. She must be so confused and scared. She's on so many different meds, including sedation. No one wants her to be anxious. I think they are struggling to get a good balance because of her low blood pressures.

Unfortunately, her hands immediately went to to her nose. And there is no way we can let her pull out that tube. So, they had to put restraints on her wrists.

And we don't want her moving too much, and she was definitely moving a lot. So, they had to give her more sedation.

Her blood pressure has been low all day yesterday (Friday) and today (Thursday, too). They added another antibiotic today, Meropenem.

Oh, last night I got to watch Murphy in his school musical. My friend Lindsay went and used her phone to video chat in Facebook messenger. It worked great!

Okay, we have to go get some dinner.

Thank you for all the love and prayers!

Much love,
Christy xo

Post-Op Day 15

I am struggling a bit tonight.

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

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

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

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

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

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

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

She's received some great gifts.
Thank you!

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

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

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

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

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

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

Much love,
Christy xo

Post-Op Day 14

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

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

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

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

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

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

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

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

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

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

Alcaligenes Xylosoxidans

See? Haunted house. From hell.

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

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

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

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

Here are some pictures from the past couple of days.

Sweet girl!

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

Me and Kristie (Tom's sister).

Me and Maggie (my niece).

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

1,000 piece vintage game puzzle

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

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

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

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

Okay, that's it for now.

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

Much love,
Christy xo