Blood Thinners are the Devil

Seriously.. what fresh hell is THIS? I knew that blood thinners were intense, but I was not prepared for what life is going to be like for the next 3 months for Jack. And it’s breaking my heart.

If you are lucky enough to be unfamiliar with these evil little drugs, here’s your crash course. Anticoagulants (more commonly called blood thinners) reduce the risk of blood clots forming and/or traveling through your blood stream causing obstruction to other organs. These drugs literally thin your blood.. which the good news is: makes it hard for it to clot.. bad news: you bleed faster and longer than usual! And that my friends, is terrifying with a 3 year old.

So Jack has been put on Coumadin for 3 months. This means he needs his INR levels closely monitored to manage the increases and descreases of his dosage.. and do you know what that means? We get to torture our 3 year old (who is already terrified by a clinical setting) every 3-4 days with blood draws. And do you know what happens at the site of his blood draw? Giant nasty bruises—- another lovely side effect from the Coumadin. 

For some reason, I thought things would get better once we left the hospital. But it actually feels harder. And sadder. I’m just ready for these 3 months to be over. I want some normalcy for my son. I want him to be able to run and be a 3 year old little boy without me chasing him and being afraid of every little step he takes. 

Piggy the cat meeting fishy friends at BCH

The after math of this past week

Home is Where Your Whole Family is.

When I say I’m done and ready to go home, I don’t think anyone really knows what I mean.

“Go home for the night and get a good nights sleep.” “Get a nice long hot shower in.” “Just go be home for a while”

All well and good in theory when you aren’t here day in and day out. The things Jack has had to endure are the things I have to sit idly by and watch.. try to absorb some of the pain for him. The hurt, the terror, the sadness.

Just this morning, I had to walk him across the hall to “the room” for yet another blood draw. The CA opened the door to which Jack screamed and cried “no, no, no mama please don’t go in that room”. I held him in my arms on the exam table as the tears streamed down his  hot sweaty face and he screamed “please mama no, don’t let them cut me.”

A little while later, I had to sit by his bedside while he screamed that he was all done during an hour long echo. I pulled up every play doh surprise and funny cat video I could to try and distract him but it was useless.

He can’t even make it through getting his vitals checked without melting into a puddle of tears. All night long, he got a couple hour naps in then he’d be woken up for another torture session.

I went home one night for a “good nights sleep”. I cried all the way home. The further from the hospital I got, the more guilt ridden I felt. I collapsed into bed and worried about his night without me. I woke up and ended up missing a visit from his surgeon. Me going home accomplishes nothing.

So when I say we are done and just want to go home, I mean I’m done watching my son suffer. I’m done seeing the fear and pain in his eye. I’m sick of hearing him beg me to make them stop when I very well just can’t. I can eat the same cafeteria food all day every day. I can go days on end with limited sleep. I won’t be “home” until Jack is home. And that’s just the way it is.

The Fontan Wringer

We are 3 days post Fontan. It has not been easy. We have been struggling with pain management. There have been lots of tears and very few smiles from our typically happy go lucky boy. He has been  watched by countless nurses today because his blood pressure has been shooting up and his O2 has been dipping low. Our boy seems to be keeping everyone on their toes, but these doctors, nurses and clinical assistants have been nothing but amazing at what they do. They are trying to figure out why his numbers are all over the place.. hopefully we will have an answer (or at least have somethings rules out) tomorrow.

A couple other things:

1) the diaphragm on one side of Jack’s chest is higher than the other preventing the lung on that side from expanding as much as the other. His cardiologist said sometimes when they are digging around during surgery, they can bruise and paralyze the diaphragm. Which may be the case for Jack.

2) There was talk about oxy just not working for Jack and that he may have to go back to morphine. They gave him a one time dose but ultimately decided to up his oxy in dosage and frequency to see how he does.

3) So many friends and family came out to see Jack here with lots of prizes in hand and I just wanted to take a minute to thank you all..

-Tabby and Tim, thank you for taking care of our girl and treating her to what was probably one of her favorite sleepovers of all time. And for showering her with gifts and for the intimate cat piano for Jack. I can’t wait to hear him play it.

-Eric and Kerri, thank you so much for bringing jack prizes, for the dinner and drinks but most importantly your company and all your love and support. We love you.

- Uncle Ricky and Uncle Nathan, thank you for all of Jack’s prizes and for the matching cat pillow and Johnny. He absolutely loves them.

- John Andrea and Adrianna, thank you so much for your company and patience today when jack was having a tough time. You made jacks day with those paw patrol mashems! It was the first time I got the hint of a smile from him and it was magic.

-And to my dream team: Jeremy and Mom. I would probably be curled up on a floor somewhere if it weren’t for you guys. There’s no way for me to thank you for all you’ve done to support me during all of this.  Team work truly does make the dream work.

Please continue to keep Jack in your thoughts and prayers... and if you have those extra good vibes just laying around, send those his way too. He could use them after today.

Pumping the Brakes

Last night was kind of awful. Jack's oxygen saturation was low and his blood pressure was high. So they decided to put him on oxygen.. Which won't over like a giant lead balloon. After begging, pleading, bribing and pretty much flat out lying, we talked him into keeping it on while he slept.... And then it was time for a midnight chest xray.

This little boy never wants to be carried anywhere. Even when he's blue and put of his second to last breath, he insists on walking on his own.. Unless it's anywhere in BCH. The wonderful CA George wheeled the o2 tank down for us and was a great GPS, always remembering to let me know right or left. During the chest xray, tears just streamed down his face while I had to hold his tired little arms above his head. His little eyes locked mine and he just kept repeating "i don't like this" through his giant tears . And my heart shattered into about 300 pieces on the floor. After 2 quick pictures, we headed back upstairs.. To more bad news. His sats were staying low so they decided to do a blood transfusion. Which meant waking up every hour on the hour to check vitals. There's something really weird about trying to sleep in  a hospital bed next to your son while someone else's blood is being pumped into his  exhausted little body.

He woke up happy and ready for some chocolate milk. We got the ok to order breakfast and Dr. Quinonez came by. They discussed Jack's case  at conference this morning and it was decided that his anatomy and Fontan were too complex  and that he'd need an MRI before he gets the official green light for surgery.

So surgery would have to be rescheduled. And I cried. And he explained why. Then I asked him to explain it one more timtimde. Then I asked him to write down the readers digest version for me so  i could relay the information as accurately as possible to Jeremy. He was  beyond patient,  kind and generous with his time. He took my email and no sooner did he step out the door, he had emailed me all the details.

So now we just sit and wait to be discharged. Dr. Quinonez told me to call Jack's cardiologist if I didn't hear from them about an MRI.

I  cry every time I think about not coming back here tomorrow and putting this surgery in the rearview mirror. Having to get out of surgery mode only to have to get back into it again is emotionally daunting. And as sucky as this all is, I know that Dr. Quinonez only wants to do the best for  Jack.  He wants to perform  this  surgery as safely and effectively as possible. So at the end of the day, whatever his surgeon says, we will support it 100%.

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.

Listen Ben...

He's at it again!

So Mr. Ben... is that your real name? WHO ARE YOU!? Why are you so amazing?? Whoever you are.. wherever you are... again, we say THANK YOU! <3 Thank you for your generosity but most importantly your undying support for Jack! Your cards always brighten our days.. Jack loves them!

The Force is Strong... with Jack Jack

Every holiday, birthday or milestone we meet with Jack is always incredibly special... and his 2nd birthday was no different. Every day is a victory.. and every birthday we see him celebrate is like winning a battle over CHD. Even at the young age of 2, I see him push himself everyday to walk a little further.. run a little harder. He tries new things.. he sings and laughs. He dances. He is so full of life and joy... I cannot tell you what a privilege it is to be his mom. Happy 2nd birthday, Jack Jack!

My big 2 yearold!

Little Vader

2 very special guests!

How happy were these 2 babes?