Thursday, October 5, 2017

General Update

So, Harlie's birthday was Monday, the 25th. And Cooper's birthday was Tuesday the 26th. He turned 9.

It was very hard to make Harlie's birthday special this year. For one, she's in pain most of the time. And she can't choose a special breakfast, lunch or dinner. She doesn't eat cake. And we are all kind of just in a miserable place right now.

Anyway, she's been asking to get her ears pierced for a long time. And we wanted to do it over the summer. But then, with her surgery coming up, we thought it would be better to wait till after. So, after all she's been through, we thought that would be a good way to make her birthday special.

I've called this place several times. Over the summer I told them about her small ear. They said they would have to look at it, but didn't suggest that I make an appointment with anyone in particular. At any rate, my ability to plan and coordinate is at an all time low right now. My brain is somewhere else. So, by the time I called recently, they had no appointments available, but said it is first come, first serve. So, in we walked.

They wouldn't do it. They said her small ear probably needs a different kind of jewelry (neometal) because there is no room between her tiny lobe and her neck. And she said that she didn't feel comfortable doing it and that I would have to make an appointment with the owner. Ugh!

I explained to Harlie that she couldn't get it done and we would have to come back later.  She just said, "okay", no tears. It kills me that she handles disappointment so freaking well.

A few days later, while on the phone with this place, an employee told me that the employees working that night questioned whether she could speak for herself. Ugh. Oh, what they don't know about her!!! She's full of words, and thoughts, and feelings! Even though she looks different. Even though she's been through hell. And even though she is having to learn how to talk with no air passing through her vocal cords. It breaks my heart that what people see at first glance is so very different than what's really there.

So, we got back in the car, and we panicked about what to do. We had no back up plan!! How did I mess this up so bad??? This girl, who is so loved, probably wasn't feeling it at all. Her cousins Maggie and Kelly came with us for the big event (flop) so, at least they were making the night more special and fun.

Years ago, we started a tradition of taking them to the toy store on one of their birthdays and letting them pick out their gifts. I don't remember how this started. But when I asked them if they still liked that, they both said yes! So, instead of going on Cooper's birthday, we went then.

Cooper picked out two small gifts. And Harlie picked out a camping Playmobile and two movies. That is all they asked to have. Isn't that crazy?

Don't you love her shirt?
It was a gift from her summer tutor, Ms. Johnson. 
After that, Harlie asked to get ice cream. That is a minor miracle, as she never eats it. Usually she takes one small micro lick, and calls it a day. But she actually ate most of one scoop. I'd give this girl all the ice cream she wanted, too.


Then we went home and let them play a bit.

It was a hard day, in general. Her birthday always brings mixed emotions. I don't want to remember the day she was born, as it was one of the most difficult and painful days of my life. She's come so far, that I usually feel more success and pride than saddness.  But, not this year. We went back so far and lost so much. And she's in pain. She is very limited in what she can do. It changed so fast. And we are all grieving.

Anyway, Cooper's birthday was good for him. But he's always happy.


I love how Rooney is lurking in the background!

Harlie has gotten so many cards! 


This shirt was a gift from my friend Susan P.
Love it!

Last Wednesday, we had a follow up appointment with the wound care nurse practitioner. That went well. Her pressure sore is healing "nicely". And she's gaining weight well. She's now up to 54 pounds, which was her weight at pre-op in August.

Forgot to tell you that we met with her physical therapist and a wheelchair guy more than a week ago. We picked out a new wheelchair for her as she has totally outgrown the one she has.

And we have come to the conclusion that she will most likely not be able to push it herself. That is just too taxing on her heart and lungs. So, we are getting her a smartdrive.
It is an attachment that goes on her wheelchair. It allows her to move the wheelchair without her pushing it. And it keeps the chair from being too heavy for me to put in the car. Most motorized chairs are too big and heavy for our current car situation.

She will wear a bracelet that connects via Bluetooth and when she taps her wrist twice, the wheelchair will go. When it is up to the speed she wants, she will tap her wrist once and it will lock in place. Then when she wants to stop, she taps it twice again and it will stop.

It is pretty exciting to think about giving her that independence. I don't know when we will have it, hopefully by Christmas?

She started homebound school last Thursday. Now that she's gotten a few sessions in, I think I can already see a small difference in her spirit. She definitely misses school. Last week I had to take her with me to get Cooper from school and take him to swim practice. I heard a noise from the backseat and looked and saw she was crying. I asked her what was wrong and she looked away and said "nothing." I asked her if seeing her school made her sad and she said yes. She also asks me, "When am I going to be my normal self?" My heart breaks for her so many times a day.

I've had a hard time writing because I just don't have much good to say. Life is really hard right now. And I constantly worry about how she is now, and how she's going to be in the future.

Management of her trach has been very difficult. She plugs every single day, multiple times a day. That means that secretions get dry and sticky and fill the trach tube, reducing her airflow.  I have been trying to figure out why that's happening. Even at night when she's on heated humidity. Its stressful.

We have been giving her a calorie powder in all of her feedings. I'm thinking this is drying her out. I've added more water to her schedule and I haven't seen a difference. Today I am going to have to reduce the calorie powder and see if that changes things.

I'm back to being an amateur medical sleuth, looking at everything as a potential clue and trying to figure things out so I can make things better. It is exhausting on my brain.

Well, today we try to pierce her ears again. We have an appointment this time. I sent the owner pictures of her ears to help her figure out what she wants to do. Should've done that months ago. But those are the things my brain just can't do right now.

Thanks for reading. Thanks for all your continued support. Thanks for your love and patience with thank yous that I haven't been able to say to you individually.

Much love,
Christy xoxo








Sunday, September 24, 2017

Harlie's 11th birthday eve

Harlie's birthday is tomorrow (Monday). She will be 11 years old. This post that I wrote on the eve of her 7th birthday, popped up in my Facebook memories today.

Ahhh, the innocent hope I had four years ago. That innocent hope I will never have again. I'm experienced. I'm seasoned. I'm tired. I'm sad. I'm angry.  And I'm trying. But it is hard.

Since that post four years ago...

I had to stop sending her to school and put her on homebound,
She got healthy (thanks to not going to school).
She started to tolerate a cap (which allowed her to learn to breathe through her mouth and nose for the first time ever).
She was decannulated.
She started to attend school for short periods of time.
She worked up to full days.
She changed schools and moved to our home school.
She attended her first entire full school year ever, 3rd grade.
She went to swim lessons and could hold her breath and pick up things from the bottom of the pool.
She talked up a storm and was able to be understood, even by people who didn't know her.

LIFE WAS GOOD.









Then she had surgery to open her mouth and BOOM, all that good stuff was gone.
She almost died.
She was re-trached.
She got a horrible bedsore.
She went septic.
She spent 4 weeks in an ICU.
She's back on homebound because she can't attend school right now.
She has virtually no air leak around her trach, so she can't wear a cap or speaking valve. She can hardly speak, and knows it.

Honestly, there's not a lot of silver lining right now. Trust me, I've tried. And I consider myself a master at finding it.

I need to have patience. She went through utter hell, and lived to tell the tale. I need to give her body time to heal and hopefully, she will start to get her strength back and will eventually be able to breathe around her trach (without additional surgical intervention, which is my fear). It is just really, really hard.

I need to have something to hold on to that tells me this will all be okay. But that innocent hope is gone. And life with a trach (AFTER life without it) isn't okay. I'm sorry. But that's how I feel.

There was a time years ago that her eating by mouth was important to me. In time, I came to accept that maybe that just isn't going to happen. And, well, life without food IS okay. Maybe she feels differently, or will in the future. But, from my perspective, she has a really good life without food. Being tube fed hasn't really stopped her from much.

But the trach? Well, that's an entirely different story. It stops her from a lot. And I'm so terrified that it won't be temporary.  And I'm angry. I'm angry that life has to be so freaking difficult for her. She's just a kid for crying out loud!

I know that most parents feel like their kids grow up so fast. And they do. I know, I have two of those myself. And I am so grateful that they are healthy and free to grow, as they should. I see girls who are Harlie's age, and they are becoming more mature, looking more and more like beautiful young ladies.

Harlie's body is not free to grow. She is 11 years old and still wears size 1 in shoes. She weighs 52 pounds, which is 2 pounds less than she weighed last year at this time. She measured 48 inches tall a week ago, but was 49 inches tall last year (explained by loss of core strength and not being able to stand up straight). All of this is because her body can't focus on growing. Not that I care much about growth charts, but to illustrate my point...


If August just hadn't happened... Harlie had such an amazing two years. The fall to here was fast and hard. I wish this post could be more uplifting. Maybe her next birthday eve...

Tomorrow, I hope she feels better than she did today. I hope she knows that I will always fight for her and that I will never stop trying to make her life better. I hope that she has more good days than bad. And I hope she knows that we are so, so grateful that she's here today, for us to love with all of our hearts. And I really hope that all goes well with her main birthday present, getting her ears pierced! We are taking her tomorrow when Tom gets home from work. Hopefully, tomorrow I will be able to post that it was a success.

Thank you for all the love you give to our sweet girl. We are so grateful!!

Much love,
Christy xo

Tuesday, September 19, 2017

We are home again.

Thank you all for your love and concern. All of her blood work came back normal, and her CT scan showed nothing amiss.  All a relief. I am not totally comfortable with the swelling right next to her pressure sore. But they are treating it as cellulitis (best case scenario) and she's on clindamycin.

Once they determined that she would not need to go to the OR (Thank God) I asked them to switch her to oral antibiotics and let us go home.  They agreed. I will follow up with wound care as needed.

I just want to say how difficult it is to be in a situation where I have to take her away to other hospitals for care. I had a meeting with the plastic surgeon here years and years ago about her jaw.  And I decided to take her to Boston instead. It is clear from our conversation today that this surgeon remembers that. I fully felt a judgment from her regarding my decision. I find that extremely frustrating. I would give anything to be able to stay home for all her care, but that just isn't the case. Heck, her life started by my having to take her to DC - no choice. Hate to say it, but that kind of set the tone.

Anyway, I am doing the best I can to make the best decisions for her. Not to mention that no ONE doctor knows what I know about Harlie. So, they do not have all the information I have. Any judgment is just unnecessary. And I don't need to feel it when I'm trying to care for my kid. Or when I need to trust a doctor who is taking care of my kid.

So, we are home. Tom had lunch ready for me. I was starving! I ate and then took a nap.

Just realized I'm missing back to school night at Murphy's school tonight. Ugh. I feel like our life is just really messy right now. It occurred to me after I went to the hospital last night that the boys were going to wake up to us being gone. And that must be weird, and difficult for them. I feel bad for the boys. They miss their sister and don't like her hurting, either.

Okay, gotta go. Thank you again for all your thoughts, prayers and overall amazing support. We appreciate you all more than you know.

Much love,
Christy xo

Say it isn't so!!!

I don't even know how to start this post. I can't believe this is happening, yet I feel as if I should've expected it.

Last night (as it is now 2:30am) I went to change Harlie's pressure wound dressing, and I immediately noticed that we likely had a problem. Her whole left butt cheek was swollen!

All day she had a low grade fever. She ranged between 99.2 to 101.2. While this would not send off alarms for a relatively healthy kiddo, low grade temps mean a lot for her. She has had many serious infections with little to no fevers. So, I was watching her closely. I had even been communicating with her docs about it over email.

I had already sent this pic to my friend Jennifer (who is a nurse) and told her that Harlie makes no sense.



Thirty minutes later I found the most likely reason why. Clearly, something was brewing in or around her pressure sore. I then sent a pic that showed how swollen she is to Jennifer. She just happened to be at work and walked over to the emergency department. She showed the pics to the doctor there and she said I should bring her in immediately.

I did NOT want to do that. But I had no choice. We still don't know how deep this sore goes. Who knows what is going on under there?!

I guess we got here about 10:30pm.  Jennifer hung out with us for a few hours. At first, she was fine.


They gave her an IV, which was horrible. She kept saying she wanted to go home. Oh, girl, you and me both! I feel so, so bad for her. I wish I didn't have to ask so much from her. It is really over the top for an almost 11-year old. And we've been doing it her entire life!!


It is now 3am and she just had a CT scan.


They are admitting her, but there are no rooms available. So we are camping out in the emergency department. I just realized I'm hungry and all I found in my bag were some gummy bears.  Desperate times call for desperate measures.

They are starting her on IV antibiotics (Clindamycin) now. Wound care is under the plastics umbrella, so they are supposed to come see her tomorrow, I mean today.

It is now 4am. I have told the story of how we ended up here tonight to seven different medical professionals. And I am officially tired. I am going to try and get a few minutes of sleep.

Seven minutes later...

Well, so much for that. They just came to tell me that they have a room for us and we should be moving in the next 15 minutes or so.

We are now squished in a shared room. Sometimes, when I'm feeling really run down, negative thoughts creep in my head. I can't help but think the Universe must have it out for us.

It is now 5:45am. And I don't know how I will continue to ask Harlie to hold still, or let the doctors look, etc. She is looking at me like I've betrayed her. I'm so tired.

They asked me, "Does she normally cough this much at home?" We have only been home for 12 days with a "new" trach - we don't have a normal yet!

The monitor won't accept that Harlie's numbers are lower than typical. It wants to alert us (by alarming over and over again) that her sats are too low at 84.  The nurse has tried to change it. You won't believe it, but something is wrong with it. Crazy, right? It looked like she had to bring an IT guy over. He didn't have any ideas. So, it has alarmed every 4 minutes. I can now reach over my head and hit the silence button without looking.

Must dig deep for strength.

It is now 7:45am, and I managed to get some sleep, while sitting up in a chair that I can't figure out how to recline. I feel like a new woman!

It is now 8:30am and I have talked to so many people in the last 45 minutes. Harlie is done being looked at and touched. Jennifer just came by and oh my gosh, she just told the team they need to limit the number of people who come to see her to essential people only! No extras! Yay!

Still waiting on plastics...

Thank you for continuing to think of her, and the rest of us!! You must be exhausted, too!! ☺

Much love,
Christy xo


Tuesday, September 12, 2017

Adjusting at home

Monday, September 11.

So, I get asked how we are doing a lot. And I really wish my answer could be more positive. But we are struggling. And it makes me not want to leave the house. I don't want to be a downer, but I can't lie, either. Life is hard right now. Harlie is hurting, both physically and spiritually. And we are not good either.

While the days are no picnic - for me, the nights are far worse.

There is no one around for me to be brave in front of, so my true feelings come to surface. And I am so incredibly sad and I feel like I'm in shock.

The hum of the air compressor that goes to Harlie's trach collar sounds really loud. When I get up to suction her, I can't believe I'm doing it. I look at the suction catheter and I just can't believe it is in my hand again.

Her voice sounds like it is getting weaker each day. And she tried to tell me something at bedtime tonight and I couldn't understand her. She runs out of breath before she can get the words out. I had to say goodnight without knowing.

Tom made her laugh earlier and it made me happy and sad at the same time. It was so good to see her smile. But it was so sad to not be able to hear her laugh. And she knows. Over the weekend she asked me why she sounds funny. She looked in the mirror and then covered her neck with her hand and said it was ugly, she didn't like it, didn't want it and wanted to know when we can take it out.

She told Brandy all the same stuff and said she wants to feel normal again, that she wants to swim and have fun said something about friends, and then she cried. She's so sad. It kills me.

On Sunday I had to send a picture of her trach site to her ENT in DC. I brought him up to date last week. But on Saturday I noticed her site looks kinda bad. The skin looks like it is stuck to the tube and I am afraid to change it. We are going to see her local ENT on Wednesday and she is going to help me change it.

Anyway, he told me to tell Harlie that he is going to work hard to get that trach out as soon as it is safe for her. So, I told her what he said. She cried, but nodded like she understood.

Today I had to take her for blood work for the third time in less than a week (Wednesday, Friday and Monday). Needless to say, she didn't want to go. We are honest with her and tell her up front. I have tried every way possible to get her to stop fighting the sticks, but she still fights like crazy. Not that I blame her. After the last month she's had, of course she just wants to be left alone.

So, we went again today and I asked her if she wanted one stick, or two. I've tried this before, with no success. She answered one, of course. But she fought and fought and I had to squeeze her tight and put my legs around hers to keep from kicking. They got it, but quickly lost it, and didn't get any blood.

So she had to get two sticks. I told her that I knew she was smart enough to  get this. If she would just hold still and try to relax, it would be so much better. I've told her this every time.

I got back in the chair and put her on my lap. And she said no, cried and then held out her arm and looked the other way.  It was amazing. Finally! I just couldn't believe it. I am so proud of her! But, of all the things you should be proud of your kid for, this one kinda sucks. Can't help hoping this one is a game changer, though.

So far, we have seen her pediatrician and have appointments with GI, ENT, Pulmonary, wound care and our insurance person (a Medicaid thing) this week. I've talked to her physical therapist, speech therapist and her school - and it is only Monday night.

Tomorrow I'm going to try to make it to work. Then Wednesday and Thursday are super busy with appointments. And then back to school night is Thursday night.  And I'm going to try to go. But it is hard to be out and about with my conflicting feelings. I want to be the Christy I was five weeks ago. But, I'm not right now.

Okay, it is late and I need to go. Thank you for continuing to think of her. Even though we are home, there is still so much healing to do.

Much love,
Christy xo

Sunday, September 10, 2017

Post-Op Day 28, Discharge Day

Discharge day (Tuesday) was super busy. And to add to the stress, the night before she had some bloodwork done. It came back with some too high numbers and some too low numbers. So the doc said they had to redo the labs in the morning. But, by that time my brother would already be on the plane.

Long story short, her labs were okay enough that they were fine with letting us go home and having me take her for more bloodwork once home.

Tom took as much stuff home as he could carry when he was last here. Then he gave an empty suitcase to my brother to carry back to me. Bruce put an empty back pack in it, just in case we needed it. Which was good thinking, because we totally needed it.

I woke up in the morning to see this.


Oh, what a sight for homesick eyes! That means today is check out day! ACK!!!

I got everything as ready as I could and took the quiet moment before the storm to say goodbye and thank you to everyone who donated money to help me have this home away from home. I just can't tell you how much YOU helped me survive the past 4 weeks of pure scary chaos and upheaval. Please know how thankful I am.


So many doctors and nurses came to visit that last day. And Casey, the occupational therapist, came to help Harlie get a shower, which was fantastic.

There was a slight issue with her tube feeding, which meant it was going to take longer to go in. As I was trying to figure out how to get all our stuff, go to the hotel and pack up, and get lunch, I just couldn't imagine having to drag her around town. I really needed to minimize her sitting up in her wheelchair because of her awful pressure sore. So, Bruce and I ran to get lunch while Harlie finished her feeding.

I just couldn't take another meal in the hospital cafeteria. Nor could I make that be Bruce's only Boston meal. So, we walked over to Sweet Cheeks near Fenway. We ordered our lunch and our nurse called. She wanted us to come back because they were ready to discharge her. So we had them box up our lunch and to try to get there faster, we ubered there. Which was painful, because traffic was so heavy, it felt like it would've been faster to walk! After a month of walking almost every where, it was hard to sit in a car when I wanted to hurry. We were less than a block away and traffic was at a standstill. So I said we will just jump out here and walk. And, of course, we watched the car pass us and drive on by while we walked the rest of the way. So typical.

We got back and started to pack up. The same doctor I ran into while running in the park was there. He asked me if we lived in Glen Allen. It was so nice to hear about home! Turns out he went to MCV and he was Harlie's local cardiologist's student years ago. Pediatric cardiology is a small world!

Anyway, we grabbed all of our stuff, which I tried to organize earlier. It was so crazy, that I didn't even think to take a photo. Which stinks because you should've seen my brother. He looked like a sherpa. It was crazy. Plus, we had Harlie and her wheelchair and the oxygen concentrator, which looks kinda like luggage on wheels.

I did manage to see Alexandra again, and got some photos with her.



Anyway, we hurried out and had to stop at the CVS to pick up one of her prescriptions. Then we requested an Uber. The pick up circle was at a standstill. Crazy traffic day. Anyway, I didn't even think about her wheelchair. Then a Kia Soul pulled up. I'll give it to that driver, he got all of us and her chair in there. It was impressive.

Then we went to the hotel. We got to my room and my key wouldn't work. By this time it was well after check out time. I had talked to them earlier to let them know that we needed a late check out. But, that didn't transfer to the key. The amount of running around was growing very tiresome. Luckily we saw an employee and he ran down to fix the key for us and brought it back.

Then we got Harlie settled for a bit and we sat down to finish our lunch. By this time it was probably close to 3pm.

Just a few minutes later the room phone rang. It was the front desk asking me when I was going to check out. Geez! Can I have just a minute, please? So, I told her Harlie had just been discharged and I was doing my best.

I had already packed everything. But, now I had stuff that I had to have with me during the trip home (for Harlie). So I had to reorganize stuff. There was piles of medical stuff like dressings, a bag of medicines and saline syringes, etc. Then we couldn't fit everything into the large suitcase. And then the hotel cleaning staff knocked on the door! So, we literally just started jamming stuff where ever it would fit. And I threw away what had to be sacrificed and purchased again at home (jars of peanut butter and jelly and detangler, etc.).

It was very crazy and stressful on an already tired, run down version of myself. Then there was poor Harlie who literally just got out of bed after FOUR straight weeks!!! How could I even think about myself?

I requested an Uber and made the same freaking mistake I had just made leaving the hospital! But, I saw that a Ford Escape was coming, so I thought it would be fine. That car should hold us all.

Oh my gosh, it pulled up and it was so battered, I'm pretty sure it had duct tape on it. And it sounded like crap. You should've seen the look on my brother's face. It was laughable by this point. It was after 4pm now and we just wanted to get to the airport.

After getting in and driving away, I asked him to please put on the air conditioning. Ugh! He said it was broken!!! Are you kidding me?! So we had to ride to the airport with all the windows down, in the hot afternoon, hearing his loud muffler (?) the whole way. I felt so bad for Harlie. It really was terrible. But getting out and starting over seemed like too much, too! And that driver was one of the nicest I've had. Ugh. I felt bad complaining. But his car... whew, not Uber or Lyft worthy in my opinion.

Anyway, we got to the airport and I told the lady checking us in that Harlie had just been discharged after a month in the hospital, and that her strength was at an all time low. Anything she could do to help us get through security without waiting in line would be greatly appreciated. She walked us straight to the front of the line. And then that security person took over and walked us through security. It was the best process yet.

Once we got through security, we found a table at a restaurant and sat down, took a breather, and had a beer, or two. Ahhh.


After what felt like a minute, we had to go to the gate. When we got there the lady said she had been calling us to board. Oops!!

Anyway, we got on and and the closer we got to home, the more tired I felt! Whew, it felt like I was hanging on by a thread.


I can't remember what time we landed. Must've been after 9pm. Since we have to gate check Harlie's wheelchair, we didn't rush off the plane. It usually takes a few minutes for them to get it and bring it to the entrance of the plane.

After waiting for most of the plane to unload, we got off and headed out. I was SO tired by now. And as we turned the corner, we saw this crazy group of people cheering and banging cowbells!!

From left: Sally Young, Kaden Stevens, Michelle Onofrio,
Stephanie Anderson, Carol Cousins, Mike Stevens,
Aimee Connelly, me, Bruce Staples (my brother),
Marcy Stevens, and Harlie, of course.
Isn't that amazing?!? They made turkey hats to represent the crazy wild turkeys I kept seeing Boston. Seriously, how sweet are they?? They have no idea how much they helped me make it the last 30 minutes home! As close as I was to coming undone, and they cheered me up, and gave me the energy I needed! Love these friends so much!!!

Oh, and Harlie punched Kaden (he's nine years old) in the stomach as her greeting to him. He was so tickled and Marcy (his mom) said that he told his friends at the bus stop about it. He got such a kick out of that. It was like she was herself again!

We got home and it was SO good to be there! The boys, dog and Mary Ann came out to greet us. Ahhh! So, so good to be together again!! And strangely enough one of the first things I noticed was the feel of carpet under my feet. Ahhh, I didn't even know I missed it!

Bruce had driven here the night before, got the suitcase and then left his truck and took my van to the airport. So, after unloading everything, he got in his truck and went home.

Harlie went straight upstairs and got in bed. Pediatric Connection delivered all of our supplies earlier that evening and Brandy came over to help set it up.

As we were getting her straight, it hit me. Where is her Go Bag?! A Go bag is a bag that has what you would need in an emergency, should her trach come out. It has two trachs, one the same size as she has in, and one a size smaller, just in case you can't get the same size in. It also has trach ties, lube, scissors, etc., all the stuff you may need.



Well, I left it hanging on the IV pole in Harlie's hospital room!!! It is in this picture!


That means we traveled all the way home with NO trachs.  So, if hers came out, it could have been TERRIBLE. I hated myself. How could I do that? What a rookie mistake! And after I told them, "I don't need trach training." Ugh!!!

So, I went through all of the supplies that were delivered and I could only find one trach, a 4.5, the same size she has in now. The 4.0 was back ordered, of course. My stomach hurt so bad. The stress of being responsible for an artificial airway is no joke. And to think we lived two years free from this!! How in the hell did this happen?!?! I feel like I'm in shock. I've been with her for four straight weeks. I've talked to all her doctors. I know medically what happened. Yet I feel like I'm in shock.

I don't really want to talk about that stuff right now. I've actually started a separate post that I wrote Thursday night. Today is Sunday, and it is hard to write about last week, when my head is now in a different place. But, I want to keep things somewhat in order. I'll share that post soon.

The next morning (Wednesday) I called the CICU in Boston and a very nice person (thanks, Dawn!) went and found our go bag and was so incredibly kind to overnight it to me. And Pediatric Connection found some pieces we were missing, including a 4.0 trach and brought it to me. Seriously, if we have to go through this awful time in our lives, at least we have some amazing supportive people right beside us.

I know I say the words "thank you" a lot. I'm afraid they will lose meaning, I say them so much. But, I really don't know how we would survive this without all of you, and every person who cuts us some major slack and gives and gives to us in so many ways.

Thank you.

Much love,
Christy xoxo




Monday, September 4, 2017

Post-Op Days 25, 26 and 27

Sunday, September 3rd

Sorry I didn't update yesterday (Saturday). But, I took the day off. There are only two visitors allowed bedside, so Tom and Kristie went to the hospital and let me take the day off. I went for a run - five miles! And during my run in the park, I ran into one of the cardiology fellows who had rounded on Harlie Friday morning. So funny!

I also saw the turkeys again, but I didn't have my phone on me, so I couldn't take a picture.

Tom got Harlie and up and walking. He is really good at stuff like that. She still didn't like it, but she will do stuff like that for him. And he came in with fresh energy, while I am hanging on by a thread.


I met Tom and Kristie for lunch and then Tom went back to the hospital. Kristie and I went to this cool area with a lot of shops and stores and walked around.

When Tom got back to sit with Harlie she pointed to her trach and asked what it was/why it was there. Tom told her that she got very sick after her surgery and the doctors had to put it there to help her get better. She said, "No, I don't want it." And she cried. Figures. The one day I don't come to the hospital in 25 days, and she wants to have that conversation.

I think she is doing okay now.  I'm sure we are going to have some ups and downs as we go home and try to get on with life.

Our friends Phaedra and Eric are in Boston bringing Phaedra's daughter back to school at Boston University. We were supposed to meet them for dinner last night. And Kristie had to fly back home.

So, Tom told me that we were meeting Phaedra and Eric at Harpoon's brewery. We shared an Uber with Kristie and it dropped us off at Harpoon's. Once there Tom told me that the hospital wanted me to have these papers.  When I looked at them I was so confused. They were VIP tickets to the Sting concert that night! So the whole Phaedra and Eric dinner plans were a ruse. We were supposed to meet them, but then he got these tickets so we rescheduled for brunch today.

Tom contacted the child life specialist and asked her if she had any access tickets to Sting. She made some calls and then told him that someone donated two VIP tickets to us!! Crazy awesome!

Oh, and while we were at Harpoon's, we ran into one of Harlie's respiratory therapists, Kim. So funny! So we hung out for a bit. You know you've been in the hospital too long when you start running into people you know.

It was a really fun night. We made lots of friends and had a great time. Everyone was so nice!





Then, this morning (Sunday) on our walk to the hospital, we saw the turkeys again. This was the first time Tom saw them.


We met Phaedra and Eric for brunch, which was so, so great. They definitely brought the feeling of home with them and I felt like me again!


Then Dr. Haas came to look at her abdomen wound. And he said he is done packing it! Woohoo! So no more Ketamine and now we can go home! Can you believe it?!?!

We said our good-byes to Dr. Haas, just in case we don't see him on Tuesday. He was great and we will miss him!




But, because of logistical issues (no equipment at home, flights, etc.), we can't leave until Tuesday. So, the plan is for her to stay in the hospital until then. Pediatric Connection is going to deliver the equipment and supplies we need at home sometime Tuesday, so it is there and ready for us when we get her home.

There are two early morning flights to Boston from Richmond, and since Tuesday is the first day of school for the boys, Tom can't get them to school AND make the flight here.  So, my brother Bruce, is going to fly up on the 8am flight and will help me get her home. She will be discharged and then we will all fly back on the first flight home that night, at 6:50pm.

Monday, September 4th

Okay, so I fell asleep blogging last night. Sorry about that! Tom and I went to dinner and when we got back to the hotel we packed up two suitcases so I will have less to deal with tomorrow. Bruce is going to bring me an empty suitcase for the rest of our stuff.

I tried to finish this post, but fell asleep mid-sentence. Woke up at 12:30am with all the lights and tv on.

Anyway, to finish what happened yesterday... Dr. Padwa came by and I asked her what she thought the long term surgical plan would be for Harlie.

If her jaw fuses again, which it could, it would most likely happen in about two years, give or take.  If that happens, then she would have to have the same surgery she had a month ago, again.

Regardless, she will need to have something done to her jaw when she is almost done growing, around 14 years old, I think.

Of course, this plan is assuming this recent surgery didn't negatively impact her airway. And it is assuming nothing new develops.

So, I will talk to ENT and discuss whether we can decannulate (take the trach out) between surgeries. I want to talk to them about long term issues with re-traching a person multiple times. Seems like that could be a potential problem. I think it is pretty clear that she will not be able to be intubated ever again. Which is pretty unsettling if you ask me. But, its just the way it has to be.

Oh, so I called the night nurse early this morning to see how Harlie's night was. She said Harlie got up and went to the bathroom when she needed to, so that's awesome. And she said that she was talking to her and that she was sassy. She said Harlie was telling her what to do and to hurry up. Yes, she's getting to be herself again.

It is now 9:00am, and Tom just left to fly back home. I really can't wait to be home again. We left four weeks ago today. Feels like forever. Truly.

Harlie's OT just came and we discussed what our travel is going to be like to get her home. She has that terrible pressure sore at the end of her tail bone, so sitting in her wheelchair, the cars to and from the airports, the airplane, etc., is going to be challenging for her.

So, she got her up and walking, and even had her go up and down a few steps.



The OT also said she is going to come back tomorrow to help Harlie get a shower. So, that's totally awesome.

They just rounded and they are going to work on weaning her off the last three medications by tomorrow. We are really winding down this hospitalization and I am so thankful.

Thank you for all your amazing generosity of love and support. Please know you all helped us get through this!

Much love,
Christy xoxo


Friday, September 1, 2017

Post-Op Day 24

Today has been busy. Harlie had PT and had to walk again. She actually walked a little less than yesterday, I think. She was even more upset today than yesterday.

She also had a visit from OT (occupational therapy). She got her up and in the bathroom. She had Harlie wash her own face. And Harlie did not like that at all. 


I really think she did too much yesterday. Because after PT and OT left she fell fast asleep. And she's just not herself. Yesterday we could see HER. Today, she's been much more quiet and just tired. And she has not wanted to talk again. So, no PMV today.

They gave her Ketamine and did her dressing change around noon, I think. I changed her trach ties and dressing there, and that looks way better. So, that's good. 

But, we realized today that her pressure sore is really causing her a lot of pain. She was so uncomfortable when she was in the chair this morning. And she did not want to get out of bed today. In bed, she can lay on her side and take that pressure off her sore. It really is awful. 

She's also been coughing a lot less this afternoon. So, either she's too tired to cough, or she's actually making some progress clearing out her lungs. I'm hoping it's the latter, obviously. 

So, while today has been fairly uneventful compared to yesterday, there is some good news...

We discussed discharge plans!!! YES!! We can see the light! 

Maureen (the case manager who helps coordinate all of that stuff) worked really hard to get everything in order considering it is a holiday weekend. This is a summary of what needs to happen:

1.  Scripts need to be written for all necessary equipment and supplies. Some equipment has to go to our house for our use there, and some need to come here so that I have it to get her home (like a suction machine, suction catheters, HMEs, etc.). The hospital will not discharge us if we don't have them with us. 
2.  Order needs to get to Pediatric Connection, and they need to put it all together and deliver some to our house, and ship stuff here. 
3. Dr. Haas is coming to assess her abdomen wound on Sunday. So, it all depends on how that wound is looking. We should be able to be discharged as soon as he says no more packing is necessary. So, I'm thinking that discharge could be Monday or Tuesday. But, if she needs more time, than that is fine. I do not want to rush her out before she's ready. 
4. Keep in mind that Monday is a holiday.

Unfortunately, she couldn't get the necessary scripts to Pediatric Connection (our nursing, equipment and supplies company) in time for them to get what we needed to UPS to ship out today.  So they said it couldn't ship till Tuesday! You can see how that impacts discharge. 

But, Tom is coming tomorrow. Pediatric Connection is not far from the house. So I asked her if they could deliver it to out house for Tom to bring to me. And they said yes! Keep in mind that it was 4pm on the Friday before a three day weekend and they were going to get them to us tonight! Maureen put us on speaker and Paige (from Pediatric Connection) said they were so excited that she gets to come home soon and that they were going to do everything they could to help. I swear I teared up hearing that. More people on our team, helping us live our lives to the fullest. Love Pediatric Connection! 

After we hung up, Maureen said that was amazing. She said she has never dealt with a company like that. Locally owned companies are the best. And the owners and staff there have been so supportive of Harlie and us. 

So, Tom is going to bring me what we need. And then whenever she is discharged we will figure out the logistics of getting home. So, those details will work themselves out in a few days. 

Also, we had a visit from Dr. Vinson, who is the anesthesiologist who tried to intubate her on the night of August 10th (when she had to be re-trached). Needless to say, I love this woman. She is the one I spoke to late that night, and she explained everything that happened in the OR. 




There is so much I want to write about our conversation, but it is too much for this post. Just know that a special post will be coming in the next week or so. Stay tuned.

Okay, it is late and Kristie and I have to leave to get dinner soon. Thank you, as always for all your support!! 

Much love,
Christy xoxo

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...

video

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!!!

video

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