A Longer Word for Long

For once, we didn't have a bright and early start to the day. Since we didn't have to check in with the cardiac Cath unit until 11, we got to casually get ready for the days events. We slept until a normal hour, I got to drop Evie off at school, packed a couple bags and we were off.

We checked in and got our badges. Once we got settled into the waiting room, a nurse came out to say hello and to let us know it would be another hour before we went back. Jack did the best waiting of his life and entertained himself with crayons and markers.. And ended it with some tablet time.

We got called back and signed our paperwork. Jack settled in on his big bed with all of his friends and his very special, very loved Soxy blanket from his auntie Lynne. He was even super excited to change from his regular clothes to a Johnny.

From there, the anesthesiologist came in to check his lungs.. Which Jack reluctantly agreed to.. Until they checked Fred the ted, piggy and soxy's lungs too.

Before they took him to put him all the way under, they  gave him a medicine to drink to make him a little loopy. I'm my  mind I was fully prepared to have to scrub in and take him in because there  was NO way my little bear of a moose was going to be taken so  easily... But I was wrong. He relaxed, got happy and then sleepy. He was still awake before they wheeled  him off. I stroked his head and told him he was going to go to sleep and when he woke up mama and daddy would be there. He just looked at me, no words and off he went.

The nurses told us they'd be calling with an update every hour...And they have. Each time they call us, they tell us another hour. We went to lunch, our for a drink and a coffee... Which sounds like a nice day date.. But when you know your son is out with a breathing tube in his throat and  caths up his groin and down his neck, it's anything but nice.

We got the call that he was out and headed up to see him. They had tucked him in nice with his blankets and all of his friends were gathered around his face for when it was time to wake up.  We spoke to the nurses and the doctor that performed the cath. They said everything looked good and went well.. they didn’t place any coils, but they did put some “chemical surgical foam” on both sides to block blood flow to help the surgeons on Wednesday. Jack had to stay laying flat for 6 hours after his cath because he can’t reopen the entry sight on his thigh.

While we waited for jack to wake up in the lab, his surgeon Dr. Quinonez came in to talk to us. He sat down and took a deep breath and we knew we were in for it. From there on, things got fuzzy and scary. Because of jacks anatomy and the position of his heart, his Fontan is more complex and trickier  than a typical Fontan. He was speaking but all of a sudden it was like we were driving through a tunnel and the radio loses signal and cuts out.. then the tears came. He closed the door, the nurse handed me tissues and then I snapped back into mom mode. He talked about what they’d have to do for the Fontan, repairing his leaky valve (which is also more complex because valves on heterotaxy kids aren’t smooth like a typical valve), risks, long term effects, how long surgery would be (8-10 hours), recovery (2 weeks)... And as scary and hard as it was to have this conversation, I am beyond happy and relieved that we  got to have it with this man. He's amazing.

Dr.Quinonez left and  his nurse Marybeth came in to check the bandage on his thigh.. It looked good and she left. As soon as she stepped out, Jack's eyes fluttered open and he immediately wanted to get up and moved his  legs. The nurse came back in and went to check his bandage.  I hear her say "shoot" and in the next second i see blood on her bare fingers and 2 nurses come flying in and are applying pressure and handing her gloves. It was all so calm and seamless that even though it was shocking that my son was bleeding, these amazing nurses knew exactly what to do before I could even begin to process what was happening . After some time , the bleeding stopped and they bandaged him back up. Unfortunately, that reset his 6 hours for having to stay still and laying down (Aka every 3 year olds favorite things to do).

He woke up again and we got moved to the floor.. A spacious double with no roommate and a lovely view of Longwood ave and the parking garage. He was awake when we got here and happily ate half an orange and red popsicle and downed THREE Apple juice boxes. Jeremy and I were happy to be greeted by 2 familiar faces... Nurses Danielle and Hannah! They took care of Jack during his last stay and even remembered us.

Jack is now resting comfortably (or at least as comfortable as someone can be with multiple  IVs and monitors attached to them), Jeremy is back home and I'm bedside reflecting on this long day. Long doesn't really seem fitting to describe  it really... And Wednesday is only going to be even longer. So if anyone out there knows of any words that mean longer than long, could you let me know so I can edit this post later?

Thanks!

Fontan Pre Op Festivities

Today was pre op day. Our check in time was 7:30 so it was a bright and early start for all of us.

The morning went by pretty smoothly and fairly quick. Started with vitals which to any typical child probably isn't all that big of a deal...but when you've been poked and prodded as much as Jack, stepping into any exam room -- even for the most trivial and noninvasive examination can be stress inducing. His oxygen saturation was at an 85, which while not all that shocking, is still distressing to see such a low number.

After vitals was the EKG with the stickers all over his chest.. Which he absolutely hates. When he cries during them, it's not just a cry just to do it.. It's this honest, but wrenching cry that rolls down your spine and leaves you feeling helpless.

From the EKG we went down to get his blood work done, which you'd think would be the worst of it all, but he was actually quite the trooper. A few tears but he took it like a champ!

From there we went for a chest xray. He's never been a fan of these but since he is such a big boy now, he got to sit up while I held his arms up  tight by his head. Again, a few tears but he did really well! And for any interested parties that would like to know what dextracardia looks like, look no further .....

Finally, from there we went to the cardiology clinic for an echo. He had a whole army in the room cheering him on.. Even grandma, sissy and  Fred the Ted got monitor stickers to try and ease Jack's nerves a little. It took some magic from laying with grandma, Evie sharing her favorite snuggle  bug and crazy cat videos to get us through .

This is where the day started to  slow and come to a screeching hault. There were a few people we had to meet so they put us in a small exam room.. Me, Jeremy , Jack, Evie, Grandma and an obnoxiously over loaded umbrella stroller.  And we sat. And waited. For 2 hours and 15 minutes. There were toys, snacks and kids all over the floor.

As sucky as it is to wait, I can't really complain. You just never know what the cardiologists are caught up in with other patients. You never know what emergencies have happened or what surgeries may have gone on longer than expected. I know I would never want to feel like our cardiologist was trying to rush us out the door-- and we never have had to feel that way at any of our appointments. Dr.  Tworetzky has always been very present and mindful and when seeing Jack.

  I had to step out at one point to take part in a local radio stations fundraiser for BCH. I  got to go on air and talk about Jack and how much BCH  means to us.

After meeting with  the nurse practitioner, who advised us to keep Jack  in a sterile little bubble until monday, we were finally  sprung and free to go home.

We have to keep this little man germ free at all costs...  his surgeon, according to the NP  today, is very conservative and will not clear Jack for surgery if he has the hint of a cold. so please please please send  us those happy thoughts and healthy vibes. We are ready to tackle this and put it behind us.

Just Like Jack

We have once again received a piece of mystery mail for Jack -- a birthday card with no return address and a hundred dollar bill.

Well I'm happy that I can actually post pictures of where some of that money went.

Half went into Jack's medical expenses bank account, where any and all money goes for Jack. Being that this was a birthday card and we are getting ready for a big surgery at the end of the month, I found something I thought might help ease Jack's hospital visits.

Meet his new friend , called a bummer bear!

He has a working zipper, just like Jack , with a stitched up heart. He's super soft and cuddly and will be accompanying Jack during his upcoming hospital stay. 

I think his face says it all... He's pretty happy to have a friend just like him.

Filling the Faulty Tub

It’s kind of like we are living in this weird, broken down tub. We had been sitting in it empty for a while with the spout just trickling drops of water. Drip. Drip. Drip.

Then we are told to wait for a call with a surgery date and someone shoves the plug in the drain. The water is still trickling out, creating a small pool at the bottom of the tub. Little by little. Day by day, the puddle grows.

We get the call we are waiting for.. March 28th Jack is scheduled for his Fontan. Then out of nowhere, the water is turned up to full blast. Everyday the water grows deeper, but it’s happening faster and faster. I’m standing on my tippy toes trying to keep my head above water while holding each kid up and dry and safe.

When we are post op and Jack is home with us, that’s when someone finally pulls the stopper. The tub starts to drain until we are left with a more manageable, shallow puddle.

But that leak. That drip, drip, drip. It’s always going to be there. Because that’s dealing with congenital heart defects. It’s never ever ever over. It’s just a matter of time before that tub starts acting up again.

At his 3 year check up... all 2’10” of him! 🥜

Someone is in a big boy bed.. he clearly hates it. 

UNSTOPPABLE with sis

In his chewie sweatshirt from Auntie Becky

The Choice to Choose

In the world of CHD, there is little choice in what and how and when things happen.

Jack had a cardiology appointment today. It was business as usual.. check in at 8:30 and getting weighed and measured. Everything was going smooth.. until it was time for "the stickers". He usually tolerates his EKG pretty well but he was not having it today. He didn't want the stickers put on and he REALLY didn't want them taken off-- they were super sticky! A millions stickers and a few tears later we were done and back in the waiting room.

We finally get called back for the echo and as we were walking to the room I hear Jack's little voice squeak out, "Can we go home now?"  They are never easy but today was probably his toughest to date. He just melted to a puddle, thrashed around and begged to be done. He didn't want kitty videos, Sia, Bruno mars or the quiet song.. nothing seemed to soothe him.

After a long, tough morning and seeing his lowests o2 sats I've seen in a while, I braced myself for our chat with the cardiologist. Dr. Tworetzky walked in and was his calm, cool self. He checked in with us and asked if there were any concerns or changes. He listened to jacks heart and quizzed him on the animal on his tshirt. He jumped right in and talked about scheduling Jack's Fontan procedure. Here's the best part-- we get to decide if we want to schedule it for November/December or wait until the spring to avoid the winter weather. For half of my pregnancy and for Jack's entire life, I feel like we have constantly been told what we had to do and when we had to do it. And now we have the power to choose.. it sounds small because really it's just about scheduling, but it feels big to me. There's power in the ability to choose.

The Fontan is done around age 3 and Jack's 3rd birthday is January 21st. If I could, I would have it done tomorrow-- I want it done and over with so we can move forward to a new normal without this giant THING hanging over us. Jeremy wants to wait. So we have a lot of talking to do.. but I have to say it feels pretty amazing to be able to talk about this.

Now and Forever

[ A little bit of a back story... Last month we walked the 7th annual Keep the Beat Walk for It's My Heart New England. Our team, Team Unstoppable Jack raised over $4,000 and I can't tell you how proud and humbled I am by that figure. It was a beautiful day spent with family and friends that I will remember forever.. and I can't wait to do it all again next year. ]

So now that that's out of the way... 

When you have a child with a congenital heart disease, or I assume any type of serious medical condition, you're sort of thrown into this community of families with children like yours. Our CHD community feels pretty big, however there is one woman who sticks with me. I don't know her well. We've attended a few of the same heart family events. We've bumped into each other at the heart clinic at BCH a couple of time. She is also the first mother to reach out to me (thanks to IMHNE) and selflessly shared her sons story and offered me support. 

Her son passed away in April after a long and hard fought battle with CHD. 

Not even 3 months after his passing, she attended the Keep the Beat walk.. a walk they attended every year with him and an army of a walking team. I spoke to her briefly and told her how much I admired her strength.. how I couldn't believe she was there. She told me he loved the walk and how he looked forward to it every year.. how he just loved seeing everyone wearing his team shirt. She said it just felt wrong not to be there. 

I stood there in awe. Jack on my hip, I felt a wave of guilt come over me. And there she stood.. even if she didn't feel like a power house of confidence and strength, that's all I could see. I don't need to see the movie, I have met super woman in the flesh.

Her words struck something deep inside of me and will stick with me forever. A mother's love is amazing.. it transcends time, space and the physical world. Even in death, a mother will still consider her child.. and set aside her own pain, fears and discomfort for them. Everything we do is for them.. now and forever.

Team Unstoppable Jack!

So proud of his medal!

Jumping those Flaming Hoops

When you have a baby and you bring them to their pediatrician, they get a lot of vaccines. Sometimes several in one visit. You don't think twice about it, because they are standard and your insurance will cover them.

You yourself go to the doctors and ask for a flu shot. You don't have the flu.. but you could get it. You're taking care of yourself and taking the right precautions to keep yourself healthy. You don't think anything of it, your insurance is going to cover.

Your son has an incredibly rare congenital heart defect amongst other heart abnormalities. RSV could potentially kill him and at the very least land him at Children's for an extended stay. You do worry about it. Because you have an insanely high deductible with one of the worst health insurance companies and they want the money upfront before they will have their pharmacy send the pediatrician the shot. One dose is $5,800. One. Dose. Let's do a little math, shall we?

One dose a month during the cold and flu season. November, December, January, February, March.. that's five months. Five doses.

5,800 x 5 = 29,000

Your husband tirelessly worked on finding some way to make this happen without financially drowning. With the help of the pediatrician's office, he found a program through the manufacturer that would send us the shot for free if you can prove you cannot afford it. After submitting paperwork and pay stubs and God knows what else, we are approved. Yay!

At Jack's last appointment, the nurse submitted the paperwork and request for his next dose which was due to happen today. Each dose has to happen within a certain time frame.

Jack and I got to the pediatrician's office and as always, he is hamming it up with all the ladies at the front desk. We get called back and then it starts... he is so adverse to nurses, doctors and doctor offices in general, it's honestly torture for the little guy. They took his sats, temp, weight and blood pressure. The practitioner comes in and checks his lungs, eyes, ears, mouth and belly.. all while Jack is screaming through his tears that he wants to go home. She assures me he looks and sounds well enough for his next dose and that the nurse will be in shortly.

As soon as I pull his shirt back on, the nurse pops back in and says, "I'm so sorry, but we don't have his synagis in the office. They never sent it, it looks like a problem with the insurance."

My heart drops. The tears start to well. Not again. Not this again.

I apologize for crying. The nurse apologizes profusely. I assure her it's not her fault. She tells me she will talk to the nurse in charge of booking these shots and that it will be figured out.

Jeremy called and talked to the nurse who got in touch with the program we have been going through. They received all of our paperwork the day of his last dose. Jack's pediatrician forgot to date next to his name, so they did not accept the request. They never reached out to the pediatrician's office to let them know. If they had, I have full confidence in the nursing staff that it would have been resolved and Jack would've had his dosage ready and waiting today.

A date. On a form. I can literally feel the heat in my face.. the anger and frustration just coming to a complete boil. My son's health, maybe even his life, being compromised over a missing date on a form. And I get it, a form wasn't filled out completely, but to just not inform anyone so that the problem could be rectified is inexcusable.. deplorable really. Because my son's health and well being means so little? How?

After all of this, the nurse resubmitted the paperwork and is expecting his dose to be in within 1 to 2 days. They will call us as soon as it comes in and we will take him right in.

My son's health depends on this shot. His little body and broken heart could not handle RSV. He needs this shot. Why does it have to be so impossible to just get him what he needs? There have been a couple times I've felt defeated..today was one of those days. Somedays the hoops are just hoops and they are easy to jump. Sometimes they are on fire; the flames are just too high to land on the other side unscathed.

This face. Those eyes. That little heart.

"Mama, go home?"

Rocking his scar.