Friday, February 23, 2018

Post-Op Day 2

Hi! I'm going to start with last night. I was in my room at the Ronald McDonald House (RMH) when I got a call from the attending doc. He said that her blood pressures had dropped too low for their liking and the typical easier solutions weren't working to bring it up. So, they needed to give her a central line and an arterial line to be able to give her epinephrine. She also spiked a fever, so they took cultures and put her on a few antibiotics (vancomycin, clindamycin and ciprofloxacin, I think).

He said that they were going to put a central line through her femoral veins. So, I told him what I tell every doc who mentions her femoral veins - they are done, scarred down and too curly for access. He said he had already looked via ultrasound and he felt good about it. Okay, then. So, I gave consent over the phone.

They called me about an hour later and told me all went well.

This morning when I called in to check on her, her nurse told me that the central line was unsuccessful. Apparently it drew back once, and then was done. Shocker.

I got up and went to take a shower, and there was no hot water. 😐 There is hot water at the sink, just not in the shower. So, I had to wash at the sink, which is great fun, especially when you have long hair.  And I was chilly, so I pretty much shaved the skin off the top of all my goose bumps on my legs. Awesome. I stopped at the office on my way out and let them know about the hot water (or lack thereof) and he said he was going to call someone, but since it is Friday, it might be Monday before someone could come out. I asked if I could move to a different room, but they are full.

My friend Donna (Alex's mom) texted me and asked how things were going. Alex is still in the hospital in Richmond recovering from spinal fusion surgery on Tuesday. Anyway, I told her about the hot water issue and she said that would've made for a great episode in our special needs reality TV show.  She's so funny. I do love that we have such similar senses of humor. We can always make each other laugh.

The rain let up a little, so I decided to walk to the hospital (two miles away). The walk is really good for me. And halfway is a Starbucks, so I stopped and got some coffee. Since I felt like it was later than when I planned to arrive, I decided to go straight to her room to see if they had already rounded. Then I would go back down to get breakfast.

Luckily they were just about to round! I'm so glad I didn't stop for breakfast!

Edit: I am inserting this picture because when I post my blog on Facebook, the first picture in the post is shown, big as day. And the first picture was Harlie, but I was afraid not everyone could handle how she looks. So, here's a random picture from her room.

So, here's how she looks today. Gotta let people know she's a girly girl, despite her current state.

She's gotten lots of compliments on her Pug bow (Cooper's Christmas gift to her) and her toes. 

So, I'm trying to figure out how to brief you in simple terms, since there was a lot of info given during rounds...

Basically they are calling what happened last night, septic shock. And because they are still trying to get her balanced, she in a rescucitative state. And because of all that, she is not stable enough to move her to the special bed. The bed arrived last night (they had to order it from Baltimore). I'm guessing pressure sores aren't as common in kids.

But, luckily we knew to alert them ahead of time, so they have been proactive by putting a special padding on that area (where she got her last pressure sore - aka sacral ulcer). Her nurse has been checking her regularly and she said she looks good so far.

They had to stop her feeds because of her instability. She is positive on fluids (meaning she is fluid heavy) and that is because her capillaries (??) are leaking, which is a symptom of the septic shock (I think that's what she said). And she will remain on the paralytic. Her lungs look wet in her x-raysand her sats are low, so they increased oxygen and added in nitric oxide, which helps patients with her heart issues (Fontans).

They need to give her a PICC line (peripherally inserted central catheter) to give her the meds she needs (a regular IV can't handle what she needs) and to give her TPN (nutrition intravenously) since she can't be fed. But, interventional radiology has to do the PICC line and they are booked for the day. So, the attending (who is awesome, by the way) said he was going to work on that.

Rounds can be stressful, because it is hard to hear how many issues there are and how few options they have to fix them. Plus, some of the terms just sound scary (septic, rescucitative state). So, I asked him from an overall perspective, on a scale of 1 to 10, how concerned is he about her. And he said 4 (she came in at a 2). So, that's good. I told him I have to minimize things, so I need them to tell me when I need to get really concerned.

Even though I minimize, all of this is sounding exactly like what happened in Boston. So, I was just feeling yucky about it all. Then my nurse said I had visitors. Really? I wasn't expecting anyone. So, I went to go see who was here and it was my friends Carol and Sally!! How awesome is that?! It was perfect timing since I wasn't feeling so great.

Since I hadn't eaten breakfast yet, we went downstairs to get something from the cafeteria. But, it was closed. I don't get how they think parents can function on a regular mealtime schedule while their child is in the hospital! So, we walked to the restaurant where I had dinner last night. It is a one mile walk.

We had a great lunch, and then walked back in the rain. Luckily they stopped and got a bag that Tom packed for me, and he packed my raincoat. We hung out in the room until they had to leave.

They brought a giant balloon for Harlie.

And they brought snacks for me. Even remembered that I miss fresh fruit when we're in the hospital!

ENT came by and said they are working to get her scheduled for the OR to see how things look and see if they can pull the ET tube. Since she has shown she can't be sedated, they would rather not let her stay on the paralytic any more than absolutely necessary. So they are trying to see if they can fit her in on Thursday.  But, the only time is an afternoon slot, and they don't want  her to be a late case. Her ENT can't be here next Friday, so they might be forced to wait till Monday, March 5th, which will be 12 days. I'm nervous for them to rush it on the short side because it is so important that her airway heal as best as it can. I guess there are pros and cons both ways. We will just have to wait and see how it turns out.

So, it is 4:30, and her nurse just said that she's had a good day and that she's stable enough to be moved to the dolphin bed.  So that's great!

And Interventional Radiology came by and she said that they are going to come and give her a PICC line sometime between 5pm and 6pm.

And I just checked my email and got this from the RMH:

A plumber visited your room today and attempted to repair the hot water issue.  Unfortunately, the repair requires them to order parts and shut down water to the building.  They were not able to do so today. 

I’m not able to move you to a different room as the house is completely full (we have a waitlist at the moment).  There is a shower in the restroom near the main office on the 1st floor that I can offer for you until we are able to make the repair or move you to a different room. 

I know that this is not ideal and I’m very sorry for the inconvenience.  We will let you know as soon as we are able to make a change to your current room.

So, keep your fingers crossed that a room opens up or that the parts come in soon. Hard to complain when I'm lucky I have the room at all. At least there is a shower I can use in the building.

They are now working on figuring out how to safely transport her to the dolphin bed. Waiting on a board, I think. I'm told a lot of people will be involved since they cannot let that trach or ET tube come out.

Tom is going to come up after work, so that's good.

Overall, I think things are better than they were this morning.

It is now 5:37pm and they just moved her to the dolphin bed. Whew! That was pretty amazing to watch. Lots of people (11-12) and coordination. I tried to take pics but they do not do the room justice. I would have loved to have gotten a bird's eye view!

They are still getting her all settled in her new bed. Interventional Radiology hasn't gotten here yet. Or maybe they are waiting outside. I have to leave the room when they do that, so I think I might go see if the cafeteria is still open. 

Okay, I'll finish this one up for tonight. Thank you again for all your love and support! 

Much love to you all!
Christy xo

Thursday, February 22, 2018

Post-Op Day 1

Oh, I'd love to know how many times I've written "Post-Op Day 1."  Wait, maybe I wouldn't.

She got out of surgery sometime after 8pm last night. We were the last parents in the waiting room. Tom cracks me up and he posted this picture on Facebook last night...

$5 if you can guess who is still in the OR.

Dr. Preciado (her ENT) came out to let us know he was done and that he took the cartilage from her good ear. He doesn't think it will negatively affect her ear's appearance.

He closed up the stoma that was in the cricoid cartilage and remove as much scar tissue as he could. However, her skin was so tight, he had to leave some so he could close it. He said he can revise that down the road.

We had to check-in to the Ronald McDonald House before 9pm. Since it takes time to get her in her room and settled before they allow her to have visitors, we couldn't wait to see her. So we left, got checked in at the RMH and then went and got dinner.

On our way out of the restaurant, I had to laugh becuse our waitress said, "Have a great night!" Sure thing, Lady! So, I said, "Thanks, you too!"

Then we went back to the hospital  to see her. No matter how many times I see her a mess like this, it still takes my breath away for a minute.

Her nurse said that unfortunately they had to restrain her and give her a paralytic. She is a fighter.

We stayed for a while, answered a bunch of questions and asked about a special bed to help prevent pressure sores. Her nurse said it has already been ordered, but won't come till Thursday. Then we left to go back to the RMH, get me unpacked and get some rest. On our way there I remembered that I forgot my toothbrush and CVS was closed. I was pretty bummed about this. So, we got a freebie from the RMH. But, as I unpacked, I found my toothbrush! YAY! You have no idea how happy that made me. I'm still happy about it, and it is the next day!

But, our neighbor was up well past midnight very upset about the fact that someone didn't know their daughter's nurse's name. Her daughter is a baby (I learned that from information I overheard) and quite frankly, I think being mad about that seems a bit harsh. But, whatever. I think it was much more reasonable to be mad about the fact that I could hear her problems, but that she couldn't hear mine. And that both, her problems more so than mine, were keeping me from sleeping!

Okay, on to today, Post-Op Day 1...

Her eyes don't close all the way when she's out like this, so they are putting goo in them and they are now taped shut.

They have added a few meds and drips...

And she is still on a paralytic. She will remain on it throughout the day, I believe. They will reassess tomorrow, I think. This is what happened in Boston, and they ended up keeping her on it for 7 days. The team here said she requires such a high dose of sedation and she still moves her head (which is bad for her airway healing and stability).  We will just have to see what happens in the next couple of days.

They are trying to move her to try and prevent another pressure ulcer, but moving her is tricky with her fragile airway. The special bed still hasn't arrived.

They are going to start her feeds today. We'll see how that goes. I'm a little worried because when they tried that in Boston, her body just couldn't process it.

PT came to move her arms and legs.

They had to remove her earrings during the surgery last night. I asked the team this morning if we could put them back in. It seems like such a little thing. But if she woke up and found her ears had closed up, she would be very upset. They said yes, and when I went to put the left one in, it had already closed! I had to poke it through the bottom and it totally grossed me out. I think it was super weird to be doing something that she would've fought me over, but she couldn't.

Tom left this morning to go back to work. The area between the hospital and the Ronald McDonald House has changed a lot - for the better. There is a Barnes and Noble and a Starbucks and some cute places to eat about a mile away. So, I might venture out for lunch.

Okay, that's it for now. Hopefully the rest of the day and night will be uneventful.

Thank you so much for all the love and support! I know many of struggle with what to say to us. But, just know that letting us know you're thinking of us makes a positive difference in our spirits. So, thank you for that.

Much love,
Christy xo

Wednesday, February 21, 2018

Stoma Revision turns into an unplanned LTR.

Breaking news below...

They took Harlie back at 3:15. 

Waiting is exhausting, for Dad.
No worries, I got your back, Tom. 
In a good mood, even when hungry!

Brave girl says, "I love you" with a smile. 

Tom and I went to put Harlie's chair in the car and went to get coffee in the lobby. While waiting, the pager went off, calling us back to the surgical waiting area. That has never happened before. I left Tom waiting for our coffee, and I calmly returned to the waiting area with my heart beating out of my chest.

Got here and they just wanted to give me her hearing aids. Whew! But, way to give this mama with PTSD a heart attack! They told me that she was cracking them up in the OR and giving them all high fives. She is such a character.

So, for the breaking news...

Sometime after 5pm, her ENT came out and said he wanted to tell us what has happened so far. So far???

He said that he can see what happened and what he has to do. In the process of beginning the stoma revision, he discovered that the emergency trach (the one placed in Boston in August) was placed above her old stoma, and unfortunately through her cricoid cartilage (it isn't supposed to go there). This created a hole in her cricoid cartilage, which is a bad thing. Plus there was a ton of scar tissue. No wonder why she was having such a hard time with all things airway.

So, he needs to fill in that hole with new cartilage. He said he would try to take it from her ear. But, he hates to mess with her one good ear. So, he is going to try to take it from her bad ear. If her ears don't work, he will have to take it from her rib. That makes for a more painful and difficult recovery though. Plus, he said he would rather save her rib for a future surgery.  Yes, what I'm explaining to you, might very well have to be done AGAIN in the future.

What he's doing is basically an LTR (laryngotracheal reconstruction).  I think most of the time LTRs are done with a goal of decannulation (taking the trach out). Of course, we aren't there yet.

Unfortunately, her jaw is so small that he is unable to get a stent in her trachea through her mouth (which is clearly the typical way). The stent allows the cartilage graft to heal correctly (in the right shape). So, in her case, he has to be creative and do something he's never done before (but he's read about it in papers). They have to intubate her via her nose, and use the intubation tube as the stent. So, she will be intubated AND trached.

He will close her current stoma, and create a new one, in the correct place.  And she will have to be kept sedated for TWO WEEKS!!!!


When they took her back to the OR, Tom said that he was going to miss her. It is weird to see her, but not see her, for a week. But, now two weeks?!?! We miss her already.

He feels like this is a good plan and he feels like this will help. It certainly explains a lot. And it validates my decisions and difficulties with her trach changes. But, there are still no guarantees. He can't really tell us what to expect. There is a lot of scar tissue, and removing scar tissue can cause more scar tissue to grow.

He said that if he didn't do it, it could collapse/close up everything above her new trach site and take away her voice completely. That is just not something we can risk. So, we signed the consent form for the LTR. And we wait and hope and pray for the best.

At about 6ish, one of the docs came out to tell me that they had successfully intubated her via her nose, but that it was very difficult and took a lot of trouble shooting.

Seriously people. Are things ever going to be easier for her? It seems at every turn, things go the hard way. My brain feels overwhelmed. She is so freaking complicated. She is so freaking unique. It is nothing short of a thousand miracles that she is still with us.

Now I'm starting to think of all the pitfalls that lie ahead. She got that horrible pressure sore after just two days under sedation in Boston. I'm assuming they will have to give her a central line for nutrition (which got infected last time).


I've got my work cut out for me. As do all of her docs and nurses.

It is now 7pm and someone just came out to let us know that he is still working and that she is "fine." We are now the last parents in the waiting room.

Thank you so much for all your thoughts and prayers. We appreciate them more than you will ever know.

Much love,
Christy xoxo

Tuesday, February 20, 2018


Hi!  So, our big good news around here is that we got a puppy!  She is a Pug and she is soooo cute!  We love her so much already!

After we got home from Boston back in September, Tom and I were talking about how things changed and how we were going to go forward.  We all lost a lot of freedom (that we all worked so hard to achieve) and it was hard to think about how we were going to adjust and make the most of things.  I said that we were just going to have to figure out a way to be happy, re-prioritize and focus on what we could do.  All easier said than done.

Then, on December 19th the breeder where we got Rooney posted on her Facebook page that one of her Pugs had puppies and there was a picture of them.

I took one look at that picture and immediately sent her a message asking her to add me to her waiting list.  The next day, Tom and I went for a walk and I told him that I did that.  He sighed heavily, and then said, "Okay, but let's not tell the kids and surprise them."  Done.  I love that we were on the same page with so little words spoken.  I had my argument all ready.  Harlie is home all day, everyday and she has so few friends.  Our freedom to travel is gone (did we ever really have it?).  And dogs are great therapy. But, I didn't need to say any of that. We have the same goal: find happiness anyway.  And her name is Mabel.

She was the runt of the litter.  And she is just the cutest thing!  It was hard to keep the secret from the kids (just because I wanted to talk about my excitement with everyone).  I thought for sure I was going to blow it, but I didn't.

On Saturday, February 10, we went to go get her.  The breeder is in Appomattox and it was about a two hour drive.  So, we told the kids we were going to visit an old friend.  They said, "Ok" and got in the car without a single question!  Geez!

As we pulled up the driveway, the kids immediately noticed a lot of Pug decorations.  When we went into her house, Cooper looked into the puppy room and said, "This is heaven!"  They still had no idea why we were there!  Tom had to tell them that we were going to take one home and they were in shock!  Cooper said skeptically, "Do we really get to take one home?"  Man, you play one April Fool's joke on a kid (years ago and not about a puppy) and they never let you forget it!

Harlie was the happiest, just look at her face!

Harlie's nurse, Brandy, got Mabel's brother for her family.  Her daughter has grown up with Rooney and had been begging for a Pug.  What better situation than to work and be able to bring your puppy to work with you every day?  She named him Morty.  He is a pound bigger than Mabel.  And they are adorable together!

Morty is on the left and Mabel is on the right.

Mabel and Morty were exposed to kennel cough from a vet visit right before they were due to come home.  So the breeder put the puppies on an antibiotic before the rest of them were symptomatic.  I think that really helped because she only coughed a few times over 24 hours and was done.  But, I never got Rooney vaccinated for that, so on Thursday when the breeder told me about it, I took him to the vet so he could vaccinated.  But, it takes a while for it to work.  So, on Saturday I asked a friend to keep Rooney until I could take Mabel to the vet on Monday.

She weighed in at 3 pounds, 1 ounce. To try and demonstrate how tiny she is (pictures dont do her justice), I put one of our guinea pigs next to her.

I had to laugh at myself, because as he was listening to her heart, I was holding my breath expecting him to say she had a problem.  But, he didn't and she doesn't.  Apparently I'm the one with the problem!  And he said that I could bring Rooney home!  Even though we were distracted by the new puppy, our house just wasn't the same without him!  So, we went to get him Monday night.  As soon as the kids saw him they all exclaimed, "Look how much he's grown!"  Haha!  After getting used to a 3 pound puppy, he did look like a giant!

I mentioned in a previous post that I had not been taking very many photos lately.  Well, that's changed.  I've probably taken a thousand in the last week!  Having three Pugs running around is so fun!  Rooney is so great with Mabel and Morty.  He's so tolerant of them and all their short bursts of crazy energy.  So many times I've asked myself why we waited this long to get another one.  But, I suppose things happen when they're supposed to happen.  We needed her now.  And we are so grateful to have her.

If she gets out of my sight, I know where to look for her - next to her food, in true Pug fashion.

Her first bath...

We love her so much!

Tomorrow we drive back to DC for her stoma revision surgery (in simplest of terms he is going to see if he can give her a new trach site).  She will be sedated for a week, until they can do the first "new" trach change.  It is surgery on her airway, and thus, has it's risks.  I am definitely nervous given what happened in Boston ("new" trach and sedated for a week sounds WAY too familiar).  But, I am trying to compartmentalize that because I don't have a choice and must go forward, despite my fears.

I am really hoping that when she wakes up, pictures of Mabel and the excitement of going home to her will be healing. 

I'll be writing while in DC and will try really hard to keep you updated.

Much love!
Christy xo

Thursday, February 1, 2018

Scope Results

So, Harlie and I drove to DC this morning. We had to be at the hospital at noon. But, she needed to have water at 11am. Her procedure was scheduled for 2pm. And because of her cardiac issues, they want to make sure she's hydrated.

Oh, how different traveling in a car is with her now that she's older and so much more independent! I just place her suction machine so I can turn it on and she suctions herself! And, she can tube herself water, too.

Traffic was light and I made it in less than two hours! Woohoo!

We got all checked in and waited for a while. This is her new wheelchair I haven't been able to tell you about.

We got it about two weeks ago. It has a smart drive thing that I can click into place under her (a motorized 5th wheel). I didn't have it on today because she's still learning how to use it. She wears a bracelet and it connects via Bluetooth. When she taps her wrist to the chair twice, it moves and will accelerate in speed until she taps it once to lock in the speed. And then she just has to steer it by applying friction to the wheels. Then, to stop it, she taps her wrist twice again.

It is going to be pretty cool, I think. She just needs more practice. And the smart drive weighs a lot less than a motorized chair. So, I can still lift the chair and get it in the back of our van, which was a must!

Anyway, her pacemaker has to be adjusted before and after every procedure. This is her holding the pacemaker thingy while Carol made the adjustments.

They finally took her back at 3pm. She told me she was scared, but she really didn't look like she was at all. She went away smiling and signing "I love you" to me. She is such a trooper!

Sometime after 4pm, Dr. Preciado came out to talk to me. I'm struggling to fully understand what he told me, so relaying it to you is especially difficult.

He said he understands why I'm having a hard time doing trach changes. There is a ridge of some sort off the back of her trachea that the trach is getting caught on. It requires a bit of pressure for the trach to finally break free from it before it goes into place. This clearly hurts her, causes a lot of irritation and I guess can build up scar tissue. And we can't let it stay this way. He doesn't want us to have to do many trach changes. Man, I am feeling so good about my decision not to change it these past few weeks!!! Go me!! I absolutely love it when my instincts are right because so often I do dumb things. Like this morning, on my way here, I went the wrong way, and had to drive several miles before I could turn around and go the right way. I've only driven here a thousand times, so that's totally understandable, right?

Anyway, he said that when I do a trach change, I need to stand behind her head while she is laying on her back and insert it in a forward motion, vs. standing in front of her and inserting it in a downward motion. Basically, I need to stay to the front of her trachea. That probably doesnt make any sense to you. Well, it sounds strange to me, too. And I'm nervous just thinking about it. Ugh!!!

I asked him if this ridge could be removed, but it is not that simple. Honestly, I don't remember what he said, but it wasn't easy to understand. He said that what she really needs is a stoma revision. The stoma is the hole in her neck. And the whole area is friable and easily irritated. She has a couple of keloids now, too. All new territory for us. Anyway, he said doing an emergency tracheostomy is very difficult and her body is not reacting/healing well. I'll say. That emergency trach was done almost six months ago! So hard to believe it has been that long. I feel like so much has happened in such a short time. Anyway, he wants to re-do it, basically.

Of course, there are no guarantees it will work. And the back up plan is that he might have to put an adult trach in. An adult trach has an inner cannula that you take out and clean, while the outer piece stays in. That way we are not having to insert one all the time. That has its negatives though, so we are hoping it doesn't come to that.

So, we have to give this stoma revision a try. This will require a week's stay in the hospital. And he says it needs to be done sooner vs. later. This is a major bummer. Anyway, he is looking at adding her on in mid February. We will see how that turns out.

He ended up putting a Bivona 4.5 in. The Bivona is more flexible. He said that a 4.5 is plenty big enough for her. So, I'm a little worried about her exercised induced intolerance. Maybe the stoma revision could help? I kinda feel like we're grasping at straws here. I must admit that I'm getting a bit worried that we aren't going to find answers.

He said I can take her home tonight. So, I am just waiting for her to wake up. She is bleeding and is in pain when she coughs. Like with big fat, silent tears. So they gave her some Fentanyl. The nurse asked me if she was awake or if she had fallen back to sleep. So, I said, "Harlie, are you awake?" And she shook her head "no." She's so funny. 

Oh, how I am not looking forward to spending another week in the hospital. Things really need to start going her way, for crying out loud!

Okay, it is after 7pm and she still looks pretty sleepy...

Thanks for reading and for loving us. We appreciate it more than you know.

Much love,
Christy xoxo

Monday, January 29, 2018

January Update

Hi! I have tried to start this post so many times. But, sometimes, it isn't easy to write.  I'll just try to jump in and tell you what's happening now...

After Harlie's heart cath in mid December, she showed no improvement in her exercise induce intolerance. You might remember that her cardiologist there said we should go back to her airway.

As things are now, she still gets out of breath with little activity (like walking to the bathroom, or going up the stairs, or answering the front door).  We are also having a hard time with trach changes.

We did weekly trach changes for nine years and never had an issue. You pull one out and you quickly put a new one in.  No biggie. I've done them alone more times than I can count.

Except now. I wouldn't dream of trying to do one without someone with me. Her anxiety is terrible, which makes her far from cooperative. And I can't blame her. We are hitting something when we put a new one in and she bleeds. That's gotta hurt.

The trach tube is soft and flexible, so in order to put it in, it has to have a hard plastic insert in it (called an obturator) to guide it in. Once its in, you take the obturator out. If you leave it in, she can't breathe. While doing the trach change, it takes so long that she runs out of air and starts to panic. So, I have to remove the obturator before it is in place to allow her to breathe. That is not the way it is supposed to go.

Anyway, I joke about having PTSD. But there are times when it isn't funny. And when I envisioned doing a trach change, I could see me not being able to get it in and her dying. So, I decided I wouldn't do a trach change that week. Or the next. Or the next. I weighed the risks versus the benefits and decided it just wasn't worth it.

I scheduled an appointment with the local ENT that her DC ENT wanted me to see. And I told her what was going on. So, she did a trach change for me. She still bled, but it went way better than when I do it. And while that makes sense (she's the expert after all) it still feels terrible to know that I'm not able to do it myself. After being able to do it independently for nine years, it isn't easy to accept that I'm not doing it right, or not as well, or whatever. I want to be what Harlie needs me to be. And she needs weekly trach changes. I should be able to do that. I want to be able to do that.

So, for now, we are doing saline breathing treatments several times a day (as often as necessary) to keep her trach free of plugs. And I haven't changed it.

She is scheduled for another scope on February 1st in DC. Her ENT (Dr. Preciado) is going to dilate her stoma and upsize her trach to a 5.0. Hopefully this will take care of her breathing issues. If it doesn't, you might have to pick me up off the floor.  It is so hard to see and hear her be so out of breath after doing so little.  I am also praying that she will be able to talk with this larger trach. It isn't easy for her with a 4.5 trach. I'm definitely worried how it will be after going up in size. But, when faced with choosing between breathing or talking, you don't really have a choice.  I'm trying hard to remain positive.  But, sometimes, I'm pretty angry at what life throws her way and the "decisions" that we have to make as her parents. 

Last week I had Harlie with me in the car when I picked up Cooper after swim practice. We were going to go to my sister's lake house that weekend. So, we were talking about that. We hadn't been since July! Anyway, Harlie asked me if she would be back to normal by summer. I asked her what she meant by normal. Her and Cooper spoke back and forth for a bit and then Cooper said, "She wants to know if she will get the trach out before summer so she can go swimming."

I took a deep breath, told myself to be strong, and said, "No. I'm sorry, Harlie. The trach isn't going to be out by summer." And she started to cry. I decided since she was already crying, I might as well go and tell her the whole truth.

So, I explained that when they gave her the trach to help her breathe, her trachea got damaged. That's why she needs the trach to breathe now, even though she used to be able to breathe without it. I told her we are all so sad for her. And that Dr. Preciado is sad, too, and he is going to try really hard to see if he can fix it. But that is going to take some time, maybe a long time. So, we don't know when it will come out. Her and Cooper were both so sad. It was so hard to have to tell her that. But, I couldn't let her think it was coming out soon, when it isn't.

We got home and I put her in front of me and I told her that we all love her and that none of us are giving up on making things better for her. But, for now, we have to try and accept the trach and find happiness anyway.  We all hugged and cried and she even hugged Cooper, who was so upset for her. Surprisingly, she has seemed okay since. Which is kinda crazy, really. I feel so bad for her. She has such grown up, complicated things to have to try and live with and understand.

Honestly, it is amazing, but she seems so grateful. She tells me she loves me when I'm feeding her. She tells me she loves me when I'm giving her a breathing treatment. And she will tell me at random times throughout the day.

I am trying hard to focus on finding happiness anyway.  I've noticed that I've taken so few photos in the past few months.  I tried to find one to put with this post, and I don't really have one to share. So, I'm going to try and change that.  The fact is that life is hard right now.  And somehow, we have to survive it and find happiness anyway.  Wish me luck!

Thank you for caring and for your unwavering support of us all.  You have no idea how often it helps me get through the days!

Much love,
Christy xo

Thursday, December 14, 2017

Heart Cath #? Results

I've been sitting here with my tablet open in my lap for about 20 minutes trying to figure out how to start...

I think I mentioned in my last post that Harlie had "exercise induced intolerance." Which, in her case the word exercise means activity of any kind, like walking from one room to another.  This has really been life limiting and has prevented her from having the energy to play or do much of anything. 

We moved the Xbox down from the 3rd floor to our living room (oh, the sacrifices we make for our children!) because she couldn't go up there to play. We give her piggy back rides up the stairs at bedtime. She has moments where she plays, but they wear her out. Most days, just walking to the bathroom leaves her out of breath.

It is amazing to me how one problem seamlessly morphs into another one. Weeks later, I'm left wondering when "this" started. With that said, I think this activity intolerance started about 6-8 weeks ago. Probably around the same time we took her to see her ENT and he upsized her trach and discovered she has tracheomalacia (collapsing of the trachea). Once he upsized her trach, he said if we still had issues with her breathing we should see pulmonary. So, we did. And once we saw him, he said her lungs were good and we should see cardiology.  She's had an echo, chest xrays, EKG and she's had her pacemaker interrogated. The only thing left to do was a heart cath. 

 So, here we are. 

Yesterday, I had Harlie and Cooper in the car after swim practice. He asked if we could do something tomorrow (which would have been today) and in that moment I realized that I had not told Harlie about the heart cath yet. Oops!! So, I said, "No, buddy. I'm sorry, but Harlie and I have this thing in DC tomorrow." She looks up and says, "What?" 

So, I told her she had to have a heart procedure called a heart cath.  Without a worry, she said, "Mom, my heart is fiiiiiine." I explained that they were going to see if they could help her get more energy to play. She was cool with that. 

Last night at bedtime, she asked, "How long am I going to be in the hospital?" I told her hopefully just one night. She smiled and said, "A night without two annoying brothers..." That girl can be so rude!! ☺ Her brothers are so good to her!

I had to have her in DC at 6:45 this morning. So, Tom woke her up at 4am. She told Tom she had a great night's sleep. She cracks me up. What kid sleeps great the night before going into the hospital for a heart procedure? Anyway, she was all smiles and silliness waiting to go back. 

As for the results...

Two main things. 

1. He found some narrowing in her Fontan. In simplest of terms, her Fontan is the name of the procedure where the surgeon re-plumbed her circulation to return blood from her body into her lungs (normally blood goes into your heart, and then gets pumped into your lungs). They use Gore-Tex and it was sutured in when she was three or four years old. Since then, she has grown, but of course, the Gore-Tex has not. So, it has narrowed, kinda. This increased pressures a bit. Here's a couple of pictures. 

So, he put a stent in it to open it up more. I think he said it was 10mm and now it is 13mm. 

He said this might help a little. 

2. He noticed during her cath that her pressures changed with her heart function. When her heart was in sinus rhythm (the way your heart is supposed to beat with your atrium and ventricle working together, in rhythm) her pressures were 16. But when she went into junctional rhythm (not the way your heart is supposed to work, with the atrium and ventricle working separately, or out of rhythm) her pressures were 19.  

Her heart is really hard to pace, with beats initiating from all over the place (sometimes from the atrium, sometimes from the ventricle, sometimes the middle, etc.) and at random times. So, they are going to come and take a look at her pacemaker at some point. And they are going to send her home with a holter monitor to see if it does it again. 

So, overall, her heart is "good." Mine, however, is another story. 

I don't think anything he did today is going to be the fix she needs to live her life like she was living five months ago.  His recommendation was to look again at her airway. Sigh... 

Needless to say, it is frustrating. To look at just her airway, although it is far from typical or ideal, it is "fine". 

To look at just her lungs, although they are far from typical or ideal, they are "fine." 

To look at just her heart, although it is far from typical or ideal, it is "fine." 

But, put them all in one little girl and it isn't "fine." You've got yourself subpar results that you just can't fix. 

I told her doctor that I still feel like I'm in shock. I STILL can't believe this is where we are. I said, "She is getting so complicated." He laughed and said, "Getting?!" Haha! Wow, is my perspective skewed. This new normal is so much worse than the old one. 

So, at some point soon, we have to go back to the beginning and talk to her ENT.  

I just want her to be able to play and be happy. I know other parents out there who want their kids to be the best at stuff. Me, I am not that greedy. Sorry Tiger moms and dads! But being happy is where its at. And, the less it takes to make you happy, the more often you can be happy. 

Anyway, we are here for the night, in the recovery room. But, we have the whole hallway to ourselves, (the very unhappy child next to us just left) so I'm happy about that! See how easy it is to be happy? And this is where I'll be "sleeping" tonight...

Tomorrow morning, she will have her pacemaker checked again. She already came and made an adjustment. They will see how she does overnight with that change. And she'll have an echo and xrays, and then we can go home. She's fiestier than normal this time around. We just had to remove two dressings (jugular access and groin), while she yelled "leave me alone!" All's done now and she's resting. 

Okay, this has taken me all day to write. I need to be done and get something to eat. 

Thank you for all the love and support. I was talking with a friend this afternoon and she said she wished she could do something for me. I told her to just love me and cut me lots of slack. She said done! Honestly, you just don't know how much you reading this, caring about us, and cutting us slack does for my spirits. Thank you, from the bottom of my heart. 

Much love,
Christy xoxo