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.