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.