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.