Update on Harlie and NYC

Hi All,

So, on Sunday we got to bring Harlie home! 

We are so happy to be back in one place again!

Saturday night my Mom ended up in the emergency department. She was very sick. Turns out she has aspiration pneumonia. They admitted her and are treating her with antibiotics and hopefully she will be back to herself soon. 

Poor Murphy was up all Saturday night throwing up. The first time he threw up was in the bathroom sink. Tom got up and helped him and cleaned up. Tom told him to take the trash can and put it by his bed, just in case. 

Then, later, he threw up again. Tom got up to check on him and returned a few minutes later. He walked in our room and said, "God hates me." He said that Murphy threw up on the trash can - but he forgot to lift the lid. 

Kids. 

With two out of three kids not well, it was hard to think this trip to New York could work. Even though Harlie is home, she is not back to baseline. You never leave the hospital at 100%, you always have to finish your recovery at home. 

So, Tom came up with a solution - just him and I should go. 

Harlie is in no condition to travel. I don't even want to take her to Target, much less to New York. And I'm not sending her back to school until January. It is just too risky. This virus is a cold in most people - and it took her out and put her in the ICU for 14 days. Plus, she was sick for a week prior to  hospital admission,  and she is still not back to baseline. 

She is still on oxygen most of the time. And we don't have enough back up batteries for the oxygen concentrator to travel. 

We just can't take her. And leaving her behind and taking the boys felt so cruel.

So, just the two of us it is.

While I'm grateful for this amazing opportunity, it is another reminder of how different our life is from the average family. It is another reminder of how little control we have. Following the rules is incredibly difficult (many times impossible) when you have a kid who just - can't.

Luckily, we have kids who must just get this. We explained it to all of them, and they said ok, have fun.  Harlie was the one who seemed most disappointed. But when I told her I was afraid she would get sick and have to go back to the hospital, she was like, I'm out.

While we wouldn't choose to go out of town right now, we clearly can't pass this up. In addition to Harlie and my Mom, our dogs got into a brand new unopened bag of Rooney's dog food and ripped it open. Gosh knows how much they ate. And Mabel has to eat prescription food. So, good luck to all back home with that!

Late last night, our friend Bethany came by to drop something off for us. It was a Visa giftcard that a group of our friends contributed to for us to have spending money in NYC.

Thank you Scott Paul for initiating this gift! (Scott and Tom have been friends for almost 30 years and he was the best man in our wedding.)

Thank you Bethany for organizing it. And thank you to our sweet and thoughtful friends for being so incredibly supportive and generous!

Thank you to our nurses, Brandy and Caylee for holding down the fort for us so we can go.

And thank you to my dear friend Mona, for giving us this amazing opportunity! We feel pretty confident that she regrets ever thinking about us. Sorry, Mona!  But, I promise you we will be the most grateful people ever. xo

Thank you all for caring about our family. You have no idea how much you help us survive this crazy life.

Much love!
Christy xo

Day 13 Update

Wednesday, November 27

Whew, I am feeling especially tired today.  As I got up and got ready to come into the hospital this morning, I was kinda shocked at how tired I felt.  I said to myself, we are only on Day 9 - that's nothing!  We've done way longer before - many times - and I don't remember feeling this run down.  I actually thought to myself, how in the world did I handle her two month stay in DC?  Heck - I even walked to and from the hospital every day.  HOW DID I DO THAT?!  It is funny, I hear that all the time from people - I don't know how you do it.  Well, to be fair, I don't, either.

Honestly, it feels like that two months was just yesterday.  But, it will be two years come February.  Can you believe that?!  How was that almost two years ago? It is as if I was already tired from that stay and this one happened right after.  I guess that just proves that some "stuff" never goes away.

Harlie is back on trach collar (off the vent and pressure support).  They put her on trach collar at 9 am and it is now 2:15 pm and she is doing well.  She is on 55% oxygen, so that's good, too.  Still too much to go home on, but she's getting there.

Caylee came to visit today.  And my friend Shawn showed up with pies from Proper Pie.  That was such a nice surprise - thank you, Shawn!

PT came and she actually got up and walked around the unit.  That went well.  The Turkey Trot is tomorrow morning.  Harlie's teacher, Laura, offered to come and sit with Harlie so I can go to the race.  How nice and generous is that?

Thursday, November 28 - Thanksgiving Day

So, the race was this morning and it was amazing.  I haven't heard the exact final number, but I think it was just under 600 people!  Kat Simons and Skip from Mix 98.1 were there.  Click here for their Facebook live video at the start. My friend Jill Blankenburg sang the National Anthem and she did an awesome job!  Really, she is so, so good!  Andy Moser from Go to Eleven Racing and Sally Young from We Heart Harlie & Friends, did an amazing job organizing this event.

Oh, a few days before the race, Cooper and I were looking at the list of registrants and he said, "I love how many families are signed up."  I thought that was so cute.

I am so bummed.  I left my phone in my car, so I didn't get to take any pictures.  Plus, there were people there that I specifically wanted to find and thank in person, but I never saw them!  There were were just so many people and I am so tired, my brain is just not working right.  People like Rob Allen and Brad Onofrio - they were supposed to push Harlie, but since she wasn't there, they pushed an empty stroller in honor of her.  And EMTs, Andy and I don't know who else he brought - from Lakeside Volunteer Rescue Squad.  Thank you to every single person who chose to spend their Thanksgiving morning with us - volunteers, athletes, family members, supporters, etc!  We are all so grateful for each and every one of you!!!

It is now 2:00 pm and me and Cooper came down to the hospital to hang out with Harlie.  Her teacher sent me a text earlier to bring Harlie's speaking valve.  I couldn't find it so I asked Laura to ask Harlie if she knew where it was.  She did.  It was right where she said it was and it has been almost three weeks since she wore it last.  Pretty impressive if you ask me.

So, she put it on as soon as we got here and started talking and singing.  I told her to put a movie on so the three of us could watch it and she said, "No, I have too much singing to do."

Then Cooper made a noise that she didn't like.  She said Cooper, stop it - over and over again.  Then she said, "Mom. Why did you bring him?"  She is ruthless.

My family came to the hospital at 4 pm to have dinner with us.  The cafeteria had Thanksgiving dinner.  It was surprisingly not bad!

Lee (bottom left) was photoshopped in since he is the one that took the picture.

After we ate, we went to the family waiting room outside the PICU.  We took turns taking people back to see Harlie. 

Nana and Harlie

Harlie and Maggie

 

Cooper, Harlie and Murphy

She had a really good day today.  They got her down to 30% oxygen.  Her respiratory therapist said I should bring in our portable oxygen concentrator so we can put her on it here and make sure it is enough for her.  I'm thinking we can probably bring her home tomorrow!

On the way home Cooper said, "It was a good Thanksgiving.  I had chocolate cake and Dr. Pepper!"  I love that he didn't think spending Thanksgiving in a hospital was a bad thing.  In fact, we had a lot of fun, all things considered.  Having family here tonight really lifted our spirits.

Friday, November 29

I can't believe it, but I got a parking spot on the first level which means I don't have to put Harlie in the crummy parking deck elevators.  I was totally confident we would be bringing her home today.

I was so wrong.

Apparently she had a coughing episode last night and they had to turn her oxygen up to 60%.  We were thinking that once she woke up, she would take deeper breaths and be able to come back down.  Unfortunately, that didn't happen.  She sounded so dry and it was difficult to suction her.  Luckily, Friday is trach change day - so we changed it.  And, wow, am I glad we did!  She had a huge plug at the end of it.  We were hoping that would improve things for her.  It didn't.

Throughout the day she had an increased work of breathing and need for more oxygen.  I think the lowest they got her was 45%. 

Saturday, November 30

So, yesterday I worked on this blog post for several hours.  As you can tell, I try to write when I can, but there are LOTS of interruptions in the hospital and it is very hard to focus.  I finally finished and when I hit the publish button, it just went away.  I was so upset.  It is now 6:00 pm and I am finally trying to re-write what I lost.

Last night Tom and I were feeling very down.  This roller coaster we live can be so exhausting.  The ups, the downs and how quick things go back and forth... it wears on you.  We are constantly re-grouping and changing our attitudes to make the best of whatever is happening.  It gets old and we were pretty angry about it last night.

This weekend we were supposed to go to Pittsburgh, PA to see Tom's family.  They planned a surprise party for his mom and Cal, in honor of their 25th wedding anniversary.  That event is tonight.  Then we were supposed to go to the Steelers vs. Browns game on Sunday with our friends Mike and Laura.  Caylee (Harlie's nurse) and her boyfriend Blake won two tickets to that game at the We Heart Harlie & Friends Gala.  So, we all had plans for that day.  Clearly, we had to miss all of that.

We have lived not being able to make solid plans for 13+ years now.  It is very frustrating.  ALL of our plans come with - well, as long as Harlie doesn't get sick. We see so many people who have the freedom to want to do something, plan it, look forward to it and then go do it.  Not us.

A little while ago, an amazing opportunity landed in our laps.  My friend Mona works for a company helping veterans.  They were looking for some veterans (Tom was in the Navy) to go to New York, and go to the Christmas tree lighting at Rockefeller Center and be on stage with Hoda Kotb!!!  She asked me if we wanted to go.  I told her that seeing that tree - at any point - has been on my bucket list.  I can't imagine being at the lighting of it!!!  So, of course I said YES!  We get to wait in the green room until it is time to go on stage.  A sponsor for the program purchased our airfare and hotel accommodations.  I just can't believe it.  Insert giddy face here.

A couple of weeks ago, Mona said there was a glitch.  There has to be a rep "handler" on stage, so there isn't room for all five of us.  One of us has to wait in the green room and can't go on stage - and it can't be Tom since he's the veteran.  Clearly I can't ask one of my kids to miss it. So, it has to be me.  Insert are you kidding me face here.

It is disappointing that a company would ask a family to exclude a family member for something like this. Unfortunately, in our case, I feel like it is adding insult to injury since we already have to do that way more than we should.  So often, we have to exclude Harlie from activities she just can't do.  It kills me.  Insert sad face here.

But, as we often do, we have to make the best of it and the bottom line is that four of us will get the experience and I will still get what I've always wanted - to see the tree.

With only a few days before Wednesday, we were feeling pretty crappy and I hate to say it - pissed.  I don't want to miss this.  I don't want Harlie to miss this.  But, we can't take her on 8 liters of oxygen.

Anyway, I got up and came to the hospital this morning.  She had a decent night.  My niece Jordan and her husband John Mark, sent Harlie some stuff she can do in the hospital.  She loved it.  Here she is making necklaces..

My friend Sally came to visit and bring Harlie a turkey trot medal.  She loved it.  They rounded and we talked about how she went backwards and is just not progressing.  I said that I feel like it is my job to give them hints about her that might help them do their jobs (since they just met her and I've known her for 13 years). At this point, I have never seen her need so much oxygen for so long - even with "big" pneumonia.  So, I'm out of hints - except for one thing I noticed... her legs look swollen to me.  And I asked them if she could take a shower.  Her BAHA (hearing aid) site looks scabbed over and I really need to wash her hair and get that cleaned up.  Plus, she just needs a shower.  She hasn't had her hair washed in two weeks.

So, they ordered x-rays and blood work.  And the doctor examined her legs and said she has pitting edema - definitely has some extra fluid in her legs.  So, she ordered Lasix to help get that fluid off.  And they wanted to get another weight on her.

She got really ticked at us for the blood work - even though the nurse was able to pull it from her IV - this is the same IV she got in the emergency department two weeks ago!  Pretty remarkable.  Then, she was ticked that I was making her get a shower.  We made her walk to the shower (just a few rooms down the hall) and she griped about it until I started washing her hair.  Then, she was happy about it.  We got her weight (up FOUR pounds since she was weighed in the ED 13 days ago - so yes, she definitely has some fluid that needs to come off).

While I was changing her trach ties, I thought, hmmm.... maybe we are over thinking this.  Maybe it doesn't really matter how much oxygen we are giving her.  So, I told her nurse that I wanted to see what she would do without it.  She was okay with it.  She desatted to the low 80s and stayed there.  Before she would desat to the 60s and 70s.  So, she has now been on ROOM AIR for several hours and is staying in the low 80s.  I've actually seen 86!

She looks good - not working too hard and is in good spirits.  Very different than yesterday.  I really think that making her mad and upset (she cried) made a very positive difference in her opening up her lungs.  That's an actual thing in babies.

All showered, clean and feeling better!

Her doctor came back and we chatted - we are all in agreement that if she does okay tonight and looks like this tomorrow - we can take her home!  Man, things change so fast with her!

So, fingers crossed that we got the miracle we wanted.  It would be so amazing for us to go on this trip together.  It would be even more amazing if something changed and they let me go with my family to see the lighting on stage.  But I guess beggars can't be choosers.

This has been a very choppy post and I'm out of time, so please forgive my typos, etc.  Thank you for all your love and support - as always!

Much love,
Christy xo

Day 8 Update

Hi!  Since it has been a few days, I thought I would give you another update on Harlie.  She went on breathing support via the vent (CPAP) on/off Wednesday.  She really didn't want it and fought anyone who tried to put it on.  I asked them to try putting it on her at bedtime, because I thought it would help her sleep and she wouldn't fight it once she realized that.

When I got to the hospital early the next morning, her nurse told me that she slept all night on trach collar (which meant NOT the vent).  Ugh.  I was a little miffed. 

At rounds that morning (Thursday) I said that they weren't doing anything for her that I couldn't do at home.  I'm not being argumentative, just stating the facts.  And the more time you spend in a hospital, the more likely you are to pick up something else to battle.  She was on oral antibiotics (not IV) and she was only on oxygen, with no breathing support.  As you might've picked up from my last post, I don't rush her to the hospital with the first sign of sickness.  I do ALL I can possibly do at home.  When I feel like she needs more than I can give her, that is when I take her to the hospital.  So, at that point, it had been four days since I brought her.  The attending doc said he was comfortable with her work of breathing.  But, he'd only met her on Monday.  And on Monday, I was no longer comfortable with her work of breathing.  I think I made rounds a bit uncomfortable that day, which I hate.

I really appreciate it when people tell me I'm doing a good job advocating for her.  But, arguing with medical professionals about her care is NOT what I like to do.  And it is hard to put my trust in a "new to us" doctor.  I've just seen too many close calls with Harlie.  It really is SO hard to be her mom sometimes.  I don't know if I'm right or not.  And I know I have PTSD and sometimes that can affect the way I think and react to situations.  Sometimes that can be a positive, sometimes a negative.

Regardless, all is well and she went on CPAP late afternoon Thursday.  Not that much has happened since then.  We've just been hanging out waiting for her lungs to get better.  She gets chest PT and breathing treatments.  She definitely turned the corner, each day talking more and looking better in general.  Yesterday (Monday) I was actually hopeful that maybe - with some luck - we'd get to bring her home before Thanksgiving.  They were able to come down in support settings and the next step was to take her off CPAP and start trach collar trials.

Today (Tuesday) I came in and she just didn't look as good, and her numbers weren't as good.  They trialed her on trach collar for two hours.  They had to go up to 60% oxygen (room air is 21% and while on CPAP she was on 35%) and she had a notable increased work of breathing.  Darn it.  I am no longer hopeful that we can take her home before Thanksgiving.

Harlie got up and sat in her wheelchair this morning.

She had her first visit from PT yesterday (Monday).  They got her up and she took a few steps.

I asked her if she wanted the other sock on, and she said no.  What is wrong with her?  Who can wear just one sock?!?!?! 

??????

Harlie's teacher and speech therapist came to visit.  Today the weather was so nice, I left and went outside and ate my lunch and took some time just to be out of the hospital for a little bit.  They stayed and hung out with her.  They said that they both miss her.  Harlie has now been out of school for two weeks! I am so thankful for these two ladies.  They are so good to her!

Her teacher (Laura) and her speech therapist (Sharon). 

They brought her a spiral doodle thing.  She really likes it.

She even tried to do it while she was getting her chest PT. 

This was her from the other night.  Her and her sleep masks!  She is such a riot.  

Speaking of her being a riot - she has said some funny things...  the other day she asked, "What about your job?"  I said, "They know I'm here and it is fine."  She was silent for a second or so, then said, "Your boss is going to fire you."  Haha!  I said, Patrick Carollo and Bill Jeffries of Kane Jeffries, LLP is not going to fire me.

She has been asking all of her nurses, doctors, respiratory therapists (RT) questions like - what's your favorite animal?  Who is your favorite super hero?  Tonight she asked her RT, "What is your favorite band?"  She said, "No one you've heard of."  Harlie said, "I like Taylor Swift. Have you ever heard of her?"  Haha!

The other night her RT came in to tell her it was chest PT time and Harlie said, "No thank you, I'm good."

The first few days we were here, she would just grab the suction catheter out of their hands and suction herself.  It is so funny to watch her interact with people and see them learn her personality.  She's really so funny.

Okay, that's it for now.  We will try trach collar again tomorrow and hopefully, she will do better.  It is really hard to live and not know what the next few days will be like.  Especially hard to plan Thanksgiving Day.  The Turkey Trot is Thanksgiving morning.  Tonight is the deadline to register online (you can register at packet pick up or race morning after tonight).  We have 500 registrants so far!  That is so amazing!  Thank you to all who have registered so far!  I can't miss this event!  But, it would be so weird to be there without Harlie!  I absolutely hate it when we can't be together as a family when we should be!  We also have new shirts and we have fleece beanies.  So excited for new merchandise!

Thank you so much for all your love and support.  We really couldn't survive this life without it.  Cooper had a rough day today at school.  He called Tom when he got home and was very upset.  I don't know how, but he had a balloon at school and decided to decorate it with the We Heart Harlie & Friends logo.  He thought it looked a little plain, so he had all his classmates sign it.  He brought it home carefully, so he could give it to Harlie.  Then it popped.  He was SO upset.  But, I think it was just an outlet for him to be upset about Harlie being in the hospital.  He worries about her a lot.  He is very sensitive that way and he misses her so much.  I thought time with good friends always makes things better.  So, I called my friend Bethany and asked her what her kids were doing.  She totally changed their plans - said an SOS from Cooper was far more important.  For real.  She ordered pizza for them and sent her kids up to the house.  I just can't tell you how thankful I am for the people who love us.

Thank you so much!

Much love,
Christy xo

Harlie is sick.

Hi! Thank you for checking in on Harlie. Here’s a run down on what’s been up with her:

November 13, Wednesday

Her temp went up to 104.5 on this day. We took her to her pediatrician that afternoon. She told me to minimize the strain on her heart, we should alternate between Tylenol and Motrin pretty regularly. She tested negative for the flu and strep. So, we kind of figured it was probably just a virus, but to be on the safer side, she put her on Amoxicillin, just in case. 

Despite the meds, she continued to get fevers. The highest came on Thursday, I think, at 5am at 105.5. Clue #1.

The dogs knew she didn't feel good, so they tried to do their part to make her feel better.

Morty (front) Mabel (these two are brother and sister) and Harlie

By Friday, I think she was staying in her bed all the time. And she was on oxygen 24/7. Normally, she’s on room air during the day, and oxygen only at night. And at night, it is normally just a little bit. But, now we were using her oxygen concentrator AND we had to bring up an actual oxygen tank and ADD it to her system to give her more oxygen. Clue #2. 

Honestly, looking back, this might have been enough to tell me to take her to the hospital. But, us special needs moms have a lot of equipment and know how to use it. And at the end of the day - no one wants to go to the hospital.

Saturday night was terrible. She coughed all night long. Every time she would cough, she would take off her trach collar and she would start breathing room  air. This would lower her oxygen saturations (sats) and her pulse ox would alarm (less than 80 causes the alarm). Normal people are very close to 100% sats. She is mid-80s on room air, when healthy.

Sometime during the night, she started coughing up blood. This isn’t THAT alarming with a trach, as her trachea is friable and could’ve easily been really irritated by all the coughing. Clue #3. So, about every 20 minutes or so, she would start coughing, remove her trach collar and then desat into the 70s and one of us would have to get up and go put her trach collar back on. This made for a very long and restless night.

Sunday was fairly uneventful. Other than her waking up a complete mess due to the bloody coughing. We had to put her in the bath first thing and while I was bathing her, Tom had to complete strip her bed and remake it with fresh linens.

Caylee worked that day and at one point she said to me, “So, at what point do you get nervous?” Well, to be totally honest, I was really worried about her. But, I was trying to ignore it. Unfortunately, due to so many traumatic experiences, I have to ignore a lot of my daily worries and fears. So, that’s my go-to coping technique. I was thinking she was sick, yes. And she was on a lot of oxygen, yes. But, we have oxygen and she is happier at home.

At some point during that day, I think, I noticed that when she talked, she had to say one or two words at a time and take a breath in between each word(s). Yeah, that’s not normal and definitely not a good sign, either. Clue #4.

By bedtime, Harlie said, “I think you need to take me to the hospital.” Clue #5. So, Tom and I talked and decided that I would take her to the emergency room in the morning. Not only was she not improving, she was getting worse. She got up out of bed to go to the bathroom and brush her teeth. As I was standing next to her I saw her turn blue. She went on about her business as if everything was fine. I quickly grabbed the oxygen tank and hooked her up and then checked her sats - 57!!! That is SOOOO low!

She recovered quickly on several liters of oxygen. We got her back to bed and settled for the night. At 1am, I went in to tend to her and I noticed that she was working really hard to breathe. Clue #6. I went in and woke Tom and asked him to take a look. We decided I would take her in then. So, we got dressed and Tom went in to get her up. Then he asked me to go look at her. She was a lot more calm and wasn’t working as hard to breathe. So, we were  thinking, it isn’t as urgent as we thought. We really didn’t want to wake her up in the middle of the night and take her. So, we decided we would let her - and us - sleep a little longer.

I feel like I need to explain that after all I’ve seen, all we’ve seen - what we call an “emergency” might look a bit different than what someone else thinks is an emergency. And to go to the emergency room means you have an emergency. And, to circle back, I didn’t think we had an emergency on our hands.

I woke up at 5am and got a quick shower, packed a bag and Tom got Harlie up and dressed. He hooked her up to an oxygen tank and carried her downstairs and into the car. Then I drove her to VCU’s Pediatric Emergency Department.

They took her back within like two minutes and got her into a room and started working on her. I immediately felt relieved. I just didn’t realize how worried I was - and in a second, I wasn’t in charge, and they were taking over. Ahhhh….

As they asked me all the questions, I heard out loud Clues # 1, 2, 3, 4, 5 and 6 come out of my mouth. Wow. Why did I wait so long to bring her?!

It is amazing what 13 years of trauma, fear, worry and survival can do to the way your brain functions. Thank goodness the docs in the ED get that! After I answered one of the many questions (the answer was one of the clues) he chuckled and said, “I love your threshold.”

They had her in a PICU room within two hours - pretty fast!

In my defense, it is now Wednesday and she is on 10 liters, 95% oxygen and two antibiotics through her g-tube (in other words, not IV meds). Soooo, technically, they aren’t doing much that I couldn’t do at home. I just don’t have a code button handy or a ventilator only a few minutes away.

Anyway, they did a respiratory panel and it came back positive for Parainfluenza (the virus that causes croup). But, since she was on Amoxicillan for a few days, that could’ve messed up the cultures. So, they are treating her for a few common things associated with her trach (pseudomonas, staff, etc.) just to be on the safe side and put her on Clindamycin and Levofloxacin.

Tuesday was a rough day. She was on 10 liters of oxygen at 95%, just to maintain mid-80s sats. There’s really not much more they can give her, except to put her on a ventilator. She had several really bad coughing fits where she would cough and not be able to breathe and she would panic. It was horrible. No one has really said much about her lungs… they don’t sound terrible. So, I don’t really understand why she has such low sats. Every other time she’s ever need oxygen support, it has been because of her lungs. Even with horrible pneumonia or atelectasis (collapsed lung), we’ve never had to work this hard to maintain mid-80s or seen her sats drop so fast. Regardless, I suggested they start using the vest machine for chest PT. They agreed and are doing them several times a day. Hopefully that helps.

She’s definitely working harder to breathe, even this morning. They haven’t rounded yet, so we’ll see what they say then. The bottom line is that as of this morning, there has been no improvement, if anything, she’s worse.

As far as the rest of my family goes, I am now sick, too. I’m guessing I have the same thing Harlie has, but it is just a cold to me. And Tom has a heart cath on Friday. He can’t reschedule because we really need to do it on this year’s insurance. So, the rest of this week should be fun.

It is now Wednesday night.  Today was a little rough.  During rounds I asked them if they wanted to do another chest x-ray.  The doc said it lags behind, so he didn't see a reason to since the last one was on Monday.  But, in my opinion, she was getting worse and everything I was hearing about her lungs (more upper airway vs. lungs, not that bad, moving air well, only a little bit coarse/junky) just didn't jive with what I was seeing about Harlie.  She looks like she's got a lot going on with her lungs. So, the doc says let me pull up Monday's x-ray.  He then points out all the areas in her lungs that show pneumonia.  Pneumonia?  That's the first I've heard that this stay.  

Apparently testing positive for parainfluenza implies that there is a viral respiratory infection aka pneumonia.  I did not realize that.   Now I'm really glad I suggested they start using the vest PT machine.  Had I realized it was pneumonia on Monday, I would've had them start it on Monday.  What really threw me is that every time she's had pneumonia, the descriptions  of her lungs were not what I've been hearing this stay.  

Regardless, this new information now makes sense.  And I suggested that they put her on CPAP (ventilator) as her continuous work of breathing was starting to make me nervous.  They agreed.  

So, in summary, they are giving her lots of support.  Overall, I feel like today was a bit of a rough day.  Every time she has a coughing fit and turns blue it reminds me of all the other times I've seen her in respiratory distress and it is like they are all happening at the same time.  It is hard to put into words.  It just scares me and I don't like it.  She is definitely not any better.  Hopefully, with the help of the CPAP, her lungs will open up and start healing. 

Someone from wound care came by and she was great and helpful and she cleaned her wound under her trach and changed the dressing I'm to put over it.  Her wound actually looks better than it has in very long time.  

I will update again when I can. Thank you so much for all the love and support!

Much love,
Christy xo

Harlie is something...

Hi!  Just a real quick post this morning. I just can't pass up the opportunity to share my girl's spirit.

Harlie LOVES camping.  Like really, really loves it.  We used to go twice a year, once in the fall and once in the spring.  Well, after her surgery in Boston in August of 2017, she missed a few camping trips.  This has been very upsetting to her.  We planned this fall's trip probably six months ago.  It is very hard to plan all of our families, and the availability of this particular camping spot (which is perfect for all of us).

We are scheduled to go Friday (two days away) afternoon through Monday.  Harlie started packing her own backpack TWO WEEKS AGO.  This is not an exaggeration.

Yesterday, during her home education session, Harlie told her teacher she was too tired to go to school for Art class.  Hmmm, that is NOT a good sign.  So, of course, I didn't send her to school.  I went to work, crossing my fingers that it was just a fluke.  Then, later that afternoon Brandy sent me a text to tell me that Harlie was napping.  UGH!  She only naps when she is sick.  So, I left work a little early and on the way home Brandy called me to say her temp was 103.5.  Why does this happen to her - like all the time????

This morning Tom woke me up to tell me that she was on fire.  Her temp this morning at 5am was 104.5.

I checked on her numerous times this morning, showering her with hugs and kisses because I just feel SO bad for her.  She knows darn well she is sick and that camping is only two days away.

Then, at 9am this morning, she comes downstairs and does this:

Isn't she something?! She received that toy as a gift when she was in the hospital a while back.  I can't possibly express how hard it is to be her mom and dad sometimes.  Sick kid = easy decision, you don't take her camping.  But, look how hard she pushes forward!  Disappointing her is so painful.  No way would I ever put her health and well being at risk for something she wants to do.  But, man, she doesn't make this job any easier sometimes. 

Also, this kind of ties in to a Facebook post by We Heart Harlie & Friends...

Time to start making your gratitude lists before Thanksgiving. We are grateful for so many things:
1. A community that supports and lifts us up
2. A group of families and children that bring us purpose
3. The ability to run in the upcoming Turkey Trot

Join us on Thanksgiving Day for the West End Orthodontics Turkey Trot benefiting We Heart Harlie and Friends! Registration ends on 11/17! Only 6 days left to guarantee your race shirt!

-In Crump Park located in the Far West End
-4 Miles (2 loops of 2 miles each) with minimal inclines
-Easy Parking
-Dogs and strollers welcome
-Hot Chocolate and Bagels after you finish

Thanks West End Orthodontics for sponsoring!  You can register by clicking here! 

I would like to focus on #3 - the ability to run in the upcoming Turkey Trot.

Really, you could change that to "the ability to _____________."

Think about that for a minute.  I think about that ALL the time.  Seeing Harlie's body struggle for things most of us take for granted, has totally changed the way I live my life.  Thinking about what I have the ability to is what makes me go to the gym, even when I'm tired, sore or don't have the time.  It is what made me run the Richmond Marathon nine years ago.  It is what makes me (and Tom) work so hard to do whatever we need to do so Harlie can experience stuff she enjoys.

Anyway, I hope you take advantage of the things you are able to do.  That's all I have time for this morning.  I will let you know how Harlie does....

Thanks for reading!
Much love,
Christy xo

Harlie's DLB

Hi!  I know it has been another long time since my last post.  Starting to write after a break is very difficult.  But, I really want to work this blog back into my life.  I feel like my mind and soul were healthier when I wrote more often.  So, I'll start with how Harlie is doing and her most recent medical experience.

She was supposed to have a DLB (direct laryngoscopy and bronchoscopy - a scope of her airway) in June, but she got sick two days before, so we had to reschedule.  Between Harlie's schedule and her doc's schedule, the next day we could do was September 13th - a Friday.  Ack!  As if her medical crap isn't scary enough! Trudging forward...

She's so good.  I really can't say that enough.  She isn't scared or whiny and doesn't complain AT ALL about being in the hospital or going into the OR.  She asked me what she was having done and I explained and that was it.  I really don't get how she seems totally fine with whatever.

For the first time ever, I did NOT like our pre-op nurse.  Keep in mind I have interacted with more nurses than I can count - hundreds!  I have never had an issue like this.  It was as if she wanted to catch me making a mistake.  WTH?  We have a "go bag" which has emergency trach stuff in it that has to be with Harlie all the time.

Here is what is in there:

a new trach, same size as what she wears (5.0) .
a new trach, a size smaller (4.5) just in case I can't get the 5.0 in.
gloves (which is kinda dumb, because in a real emergency, I'm not going to waste my time putting on gloves - her breathing is way more important, but whatever, I have to have them in there).
new trach ties
a pair of scissors
saline
lube, to put on the trach
a disconnect wedge (this is used with a ventilator - which we don't have, yet I am supposed to have it in my bag because someone knows better than me what I will use in an emergency).  Can you tell that this particular item ticks me off?  Granted, it is small and doesn't weigh anything.  So, I just leave it in there - I have to pick my battles.  But, OMG - sometimes I just hate being told what to do all the time.

Anyway, usually nurses ask me if I have my go bag and we put it on her bed and it goes with her into the OR.  And that's it.  Not this nurse.  She asked me to open it, which I did.  Then she asked me to show her the trachs, which I did.  Then she asked me to OPEN each box to make sure the trachs inside match the boxes.

Okay, can I just tell you that I've had a trached child for a long time now.  I've done that already, I promise you.  Well, anyway, her whole demeanor towards me was just crappy.  Plus, she kept on calling me "Mommy."  Hold up - let me tell you about that for a second.

I have accepted that most nurses call me "Mom" - they deal with a lot of patients and parents, so I get that this is just easier for them.  And really, when it comes to taking care of my kid - I don't want to make that job harder than it needs to be.  Plus, they don't call me "Mom" at the beginning of every sentence or question.  Usually it is to get my attention.  Once they have my attention - it isn't necessary to say "Mom" anymore.  When Harlie is in the CICU, the nurses usually learn my name, or heck, they already know it from a previous stay. This may shock you but, Harlie's kinda well known there.  Haha!

Anyway, in a pre-op situation - we are there for like an hour (hopefully).  They come in ask a shit ton questions and then the anesthesiologist comes in, the doc comes in, the OR nurse comes in, I sign consent, then someone comes to get her and they leave.  It is usually VERY busy and relatively quick - so there is no way the pre-op nurse is going to try and remember my name.  She sees a lot of patients and parents in a day, and I'm just not going to expect that.

However, it is a very small space - and I'm right there, looking at the nurse - there is NO need to say, "Mommy" EVERY FREAKING SENTENCE OR QUESTION.  I can't stress this enough.  NO NEED.  You have my attention.  I know you need information from me.  CAN'T YOU SEE I'VE DONE THIS ONCE OR TWICE BEFORE?!?!?!

Holy cow, I really wish I had some street cred, here.  Fast pass?  Frequent flyer points?  Something. Anything.

Deep breaths.

Okay, back to what I was saying.  She asked me to open the freaking boxes for her. It was like this, "Mommy, where's your Go Bag?"  "Mommy, open it."  "Mommy, unzip it."  By this time she had said "Mommy" like a thousand times and it was in this tone like I had screwed up and was in trouble.  And frankly, I was sick of it.  So, when she said, "Mommy, open the boxes." I said, "Knock yourself out" and put the Go Bag on her bed and walked away.  Then I watched her struggle to open them with one hand because she didn't want to put her clipboard down.  Whatever!

So unnecessary!

Then she asked me where the suction catheter was.  I went to the suction machine bag (which is always where Harlie is, and which is where the Go Bag is kept) and held up a gallon ziploc bag full of suction catheters.  She looked at me like she wanted one in the Go Bag.  Now, can I just say how stupid this is?  There is always a suction catheter ATTACHED to the suction machine.  The suction catheter is pretty useless without the suction machine.  In a true emergency, when you can't get either size trach in - you can technically use a suction catheter until you get to the hospital or get more help (kinda like breathing through a very small straw).  BUT, her ENT gave me an ET tube, which is used for that - so I have a sterile, unopened ET tube in her Go Bag.  Therefore, I don't need a stupid suction catheter in her Go Bag.

But, again, pick my battles.... I hand her a new suction catheter from the ziploc bag.  She takes it, and looks at it strangely.  Then says, "Mommy, is this a used one?"  OMG.  No.  The paper thing isn't broken and the end is still attached.

New

Opened

She was still suspicious.  For real.  Sometimes I don't know how I do this.  So, I take a deep breath, and then explain that home trach care is different than hospital trach care.  Fucking duh.  I can't use what they use in the hospital because all suction catheters used in the hospital are single use and are completely exposed.  While home catheters have a plastic sleeve so it can be used more than once.

She leaves and returns with a hospital suction catheter and PUTS IT IN MY GO BAG.

Sigh.

Another person that comes to see us in pre-op is a pacemaker person (usually an NP, I think).  They hook up her pacemaker and make adjustments as necessary for whatever procedure she's having done.  This particular NP was new to us - and we totally hit it off.  We were chatting and I was answering her questions and all was great.  Then she asked me to sign something and when I took A SINGLE STEP towards her - the pre-op nurse exclaimed, "Mommy! Don't!" and put her arm out to stop me and motioned that I shouldn't leave Harlie on the bed and walk away.

ARE YOU FREAKING KIDDING ME?!  Harlie was a week away from being THIRTEEN YEARS OLD.  She's not going to fall out of the bed.  She is well aware of herself.

This nurse was the WORST.

Honestly, I'm stressing myself out just remembering all this.  And I'm just telling you the highlights. It was really so, so bad.

So, on to how the DLB went...

Dr. Preciado said that he couldn't get the scope in through her nose, which is odd and not good.  So, he's never been able to get the scope down her mouth.  Her cervical spine is fused in one area (was like that when she was born) so she can't tilt her head back (this also poses a big problem for showering with a trach - since she can't look up at the ceiling).  Between that and her small jaw, accessing her airway via her mouth is impossible.  So, they put her under by attaching it to her trach and once under, they put a very small scope down her nose.  It is concerning that he couldn't get it in that way.

He is hoping that it was due to inflammation.  If it isn't inflammation, it is could be scar tissue, which clearly, would be worse.  So, he put her on Ciprodex ear drops - but we give it to her via her nebulizer.  Crazy, but he says it works for inflammation.  Well, cross your fingers it works for Harlie, too. So, twice a day she gets Ciprodex and saline nebulizers (along with her Budesonide and saline nebulizers, also twice a day).  He will repeat with another DLB in January to see how her airway looks.

Thinking about her actual aiway is really difficult for me.  By difficult, I really mean painful.  We never had any airway problems before two years ago.  She had access to her airway problems - but never problems with her airway itself. Now, she's got airway problems.   She lived for over SIX months with her trach in her cricoid cartilage - instead of her trachea.  I'm afraid it caused permanent damage and I'm terrified that we won't be able to fix it.

And when I start thinking about that, I have to force myself to stop.  And I have to say to myself that we have to tackle one problem at a time.  So, hopefully, these nebs will help with that "inflammation."  After her next DLB in January, we will start focusing on her upcoming jaw surgery in March in Boston.

I have so much more I want to share - but I'm out of time for now.  I have a super early morning tomorrow.  I'm getting up and heading to Sedona, Arizona to meet my special needs moms friends.  This is the same trip I took this week last year.

So, hopefully, I'll post again next week.  Thanks for checking in!

Much love,
Christy xo

Back to Boston...

I know it has been another really long time since my last post.  Writing about Harlie is harder than it used to be.  Writing about her and our life with her was, for many years, very therapeutic. I found early on in her life that if I was going to share the negative, I had to find some positive to tell you about.  I had to show everyone that we were still hopeful, happy and grateful.  So, even during some really rough times, when I sat down to write, I found something positive to share.  And looking back, that wasn't really that hard - because I really was so hopeful that easier times were to come.

But, then August of 2017 happened.  Boston happened.  And that emergency trach took all of my hope away.  All of it.  It made finding the positive feel almost impossible.  So, over time, writing became to feel more of a burden.  Especially once we got home from her two month, scary, horrible hospitalization in DC (February - April 2018).  I often have to fight to keep myself from feeling angry.  We just lost so much by going to back to the trach life.  And the trach life has been so much harder this time around.  Insult to injury.  Salt in a wound.  So much more pain all around this time.  As Harlie's mom, I am expected to handle stuff that makes other people cringe and look away.  But, I can't do that.  I have to face it - and do so with a smile.

I have to hide my true feelings most of the time.  I have to hide my anger, my grief, my fears, my utter disappointment and defeat (which I am feeling all of the time) from most of my friends, my family and most of all - from Harlie. No one wants to see that.  No one wants to hear it.  Most people don't want to even think about it.  And, when it comes to Harlie, she needs me to be positive, upbeat, happy, grateful and funny.  That's what I want to teach her more than anything - to be funny.  😊

So, burying my feelings most of the time takes a lot of energy.  And I've been lacking in the energy department for quite some time now.  Most nights my sleep is interrupted by Harlie's equipment -equipment we didn't have to have when she wasn't trached.  More salt in the wound.

Anyway, in our never ending quest to give Harlie a better life, we had no choice but to revisit the craniofacial team in Boston.  This was done with some reservations:

1. I didn't want to go back. I didn't want to feel what I knew I would feel returning to Boston Children's Hospital.  Hello, PTSD!

2. Traveling with Harlie takes energy.  I don't have a ton of energy right now.

3. I was afraid they would say there was nothing they could do to help her.  Or that they wouldn't even try given the amount of close calls and challenges during all of her post ops.

But, what are we supposed to do - give up?  I don't want her to live the rest of her life this way!  And I've made a point in not letting fear make my decisions for me.  Plus, we did all we could to help her airway, and now there's nowhere else to go - but Boston.  So, I wrote her surgeon and told her what has happened, and what I was thinking.

Our appointment was Friday, July 12.

Thursday night was difficult.  My stomach was in knots.  While my mind knew it was just an appointment, my body was feeling the stress anyway.  So weird how that happens.  We don't have as much control of our feelings as people think we do.

We flew up to Boston Friday morning.  Got there and took an Uber to our hotel.  It was only about 10am, so we couldn't check in.  But, they held our bags for us so we didn't have to lug them around all day.  Then we walked to one of our favorite restaurants, Sweet Cheeks, for a quick lunch.  Then we walked to the hospital for our first appointment - her CT scan.

She held still for three minutes and all went well.

I want to go back for a minute to tell another story.  Back in August of 2017, the night of her emergency trach, I met with the anesthesiologist.  She was really nice, very good at communicating with me and told me about what happened in the OR that night.  But, it was so late.  It was well after midnight, and we were all so tired.  It was such a hard night all around.

Weeks later, while Harlie was still in the hospital there, that anesthesiologist came back to visit us.  I can count on one hand how many times an anesthesiologist has come back to visit after surgery.  She really wanted me to know how hard they tried to not trach her.  She wanted me to know they didn't make that decision lightly.  They had no choice - she would have died if they hadn't.  She spent some time with us that afternoon and it was great.  Here are some pics we took that day.

She gave me her card and asked me to send her those photos.  She told me that she would never forget Harlie or that night, and I believed her.

But, when we got home in September of 2017, life was so hard.  And I had nothing positive to say to Dr. Vinson.  I kept waiting for things to get better so I could tell her things were better and that we were okay.  I wrote her a card and wanted to mail it - but never did.  This is a perfect example of how the simple things can be too hard for a special needs mom.

So, finally, a week before our appointment, I emailed Dr. Vinson. I told her I was sorry for taking so long to share those pics.  I said I would love to see her when we were at the hospital if she was around.  But, if not, I wanted to drop something off for her.  She wrote back and said she wanted to see us, too.  She remembered, just like she said she would.  She gave me her cell number and asked me to text her when we arrived.

I packed that card I wrote and a We Heart Harlie & Friends hoodie.  But, as things often go, we freaking left it in our suitcase - at the hotel!  Ugh!  Simple things being hard.  I realized it at lunch.  So, I asked Tom to go back to the hotel and get it while I took Harlie to the hospital and her appointment.

And then Dr. Vinson found us in the CT Scan room.  So, I told her Tom was getting her gift and would be there soon.  She got called away and said she would find us later.

Then we went to dentistry to get images done there.  I sent Tom a text to tell him where we were.  Boston Children's hospital can be very confusing.  There are lots of separate buildings (we had three appointments in three separate parts of the hospital) to get to dentistry, you have to take one set of elevators to a floor, walk through that level, to go to an older part of the hospital, then take another elevator to dentistry.  I told him I was soooo tired and could he please stop and bring me an ice coffee.  He found us and I was grateful for the coffee.

Harlie was so cooperative for the dental images!  I know she was uncomfortable and her mouth/gums started to bleed during it - but she still did everything asked of her - with no complaint.

Then we headed over to craniofacial. After getting there, I realized I LEFT MY COFFEE IN DENTISTRY, which as I mentioned, was way too far away to go back and get.  The struggle is real, people.

I forgot to mention that on Thursday I got a call from a nurse practitioner from the craniofacial department.  She had some questions about Harlie.  She told me she was creating a PowerPoint presentation for the team so they would be prepared for us when we got there.  So crazy - my kid needs a freaking PowerPoint presentation!

Anyway, we went into the same conference room we have been in every time.  The team was waiting and Harlie's images were on the big screens on the wall.

Cutting to the chase, they confirmed what I have believed the whole time.  The jaw fusion release (ankylosis release) on August 8, 2017, set her jaw back, into her airway, causing an upper airway obstruction.  I remember meeting with one of the surgeons immediately after her surgery.  He said he had to remove a centimeter of bone.  I was shocked, a centimeter is a lot when we worked so hard a few years ago for MILLIMETERS.  So, I asked, "Is that going to negatively affect her airway?"  No, he said.

But, doctors are people, too.  They are not right all the time.  And each patient is different.  Especially Harlie.  But, I knew.  And I need to remember that. I need to have confidence in my gut and what I know, even without a medical degree.  No one knows Harlie better than I do. 

While there are several options out there, in her case, there is only one real, viable option - mandibular distraction.  That is what she had in July of 2013.

Here are some images from her CT scan.  Air is black and there should be black going all the way from her nose and mouth, down her throat and into her lungs, with no interruption.  As you can see, she does not have an open airway.  This is her profile.  Also, notice her cervical spine defects.

The surgeon said that it is likely that the back of her tongue base is touching the back of her throat at times.  Ugh. Can you imagine how annoying that must feel for her? No wonder she coughs all the time! My poor girl!

Mandibular distraction is when they break the bone, put pins and rods on both sides of the break and everyday we turn the screws and it re-breaks the bone - spreading the break apart, allowing new bone to grow in the middle.  This will (hopefully) make her jaw longer, so her tongue base can have room in her mouth and get out of her airway.

However, it isn't quite that simple.  After the last distraction (which was successful) her jaw bone kept growing - but towards her ear (which is not good) and it kept growing until it touched the base of her skull.  That is how it fused closed.  And that is why she had to have the release in August 2017.

So, she basically has no jaw joint.  Which means that when we go to distract her jaw bone again, it would spread apart in both directions.  We only want it to grow in one direction - towards her chin, not towards her skull (this would certainly cause the fusion again).

So, they are going to install some hardware to give the jaw stability - so it only grows in one direction.  They pulled up another patient's CT scan so we could see an example of the hardware they will use on Harlie.  Here it is:

The rods that go in above her ears will be exterior and are there for stability.  Nice, right?

We will turn screws for roughly three weeks and she will have to wear the hardware for two to three months, I think.  Those time tables could certainly change, depending on her bone cooperation and growth, of course.

After they went over everything they asked us how we felt about doing it.  Here is my thinking:

1.  The risks we have to consider when Harlie has surgery are the same - no matter what surgery she is having.  The risks are not greater with this surgery.

2.  She does not have a good airway.  If her trach were to come out and we couldn't get another one in, she would not be able to breathe.  This is a hard fact to live with, and quite frankly, I find this riskier to live with than any surgery.

3.  The scar tissue around her trach is horrible.  It flares up (bubbles up like a blister) and bursts on a regular basis.  This skin can only handle so much trauma.  And it is painful for Harlie.  There is no resolution in sight.  Other than getting that trach out and letting that skin heal for good.

4.  Her quality of life.  She knows what she's missing.  She sees what other kids can do and what she can't.  I took her to the pool a while ago and I had to hold her on my hip and walk around like she was a baby - she will be 13 next month.  It was raft day at the pool, and she had to watch all the other kids play freely on rafts.  Sometimes I don't know how she deals with her sadness.

While hearing all this was initially really difficult, I quickly made the transition to relief.  I was so grateful to hear that they think they can help her.  I was really afraid that we were out of options.

After we told the team we want to proceed, Dr. Padwa said, "Okay, team, what do we need to do to entertain operating on this kiddo again?"  Haha!  So, they started to brainstorm who needs to be on board - ENT, cardiology, etc.  She said she wants Harlie to come up one month before the surgery to see all her specialists so they are all comfortable with a plan.  Then we will go for the surgery, come home for the turning and recovery.  Then go back up again to have the hardware removed.  That's a lot of travel.

Oh, and while we were still in the conference room, I received a text from Dr. Vinson.  She said she had to leave the hospital soon but wanted to see us first.  So, I texted back that she could just come to us then.  It was so funny because right about then we started joking with her docs.  Dr. Padwa was talking about that night (August 10, 2017) and was telling the team how she was in bed when she got the call from the hospital that Harlie was really struggling to breathe and needed to be reintubated in the OR.  She told them she threw on her scrubs and rushed in.  She said she was freaking out wondering why it was taking so long to get her down to the OR.  I do remember her yelling, "WHAT IS TAKING SO LONG?!"  It was absolutely awful to watch Harlie struggling to breathe.  It makes my stomach hurt when I remember sitting by her bed that day.  We all made her struggle for too long, hoping and praying she would turn the corner.

Anyway, Dr. Padwa said something like, "I was freaking out and here was mom, being calm, making jokes and asking ME if I was okay!"  I had to tell them that is just the way I cope.  I really don't like serious situations, so I try to make it better by joking and if you don't know me, you might find me inappropriate.  I am pretty calm in those situations (sad that I can say "situations" and that I know how I behave in them).  I want the team to be able to focus solely on Harlie and not have to worry about me.  I probably also don't want to show how freaking scared I am.  Because trust me when I say those situations are super fucking scary.

Back to the story, Dr. Padwa said, "I remember the anesthesiologist that night."  And then there was a knock at the door and it was Dr. Vinson.  Haha!  Dr. Padwa was so surprised!  She said, "Amy, I was JUST talking about you!"

So, Dr. Vinson joined us and we finished up our consultation.  So, we are waiting on a surgery date now.  My guess is we will have to wait until spring 2020.  We'll see.

Okay, I'm going to wrap this one up.  This was long and took forever to write.  I guess it is appropriate that this one gets done close to the two year anniversary of that stuff.  I have a lot more feelings about all that - might share them in another post.  We'll see.  At any rate, this week is a tough one for Tom and I, with lots of big, high and low memories.  Thanks for thinking of us and cutting us some slack. 

Much love,
Christy xo