Tightrope.

“Patience is a virtue”…the thought runs through my head as I quickly run through everything happening in life. Having a child in the hospital, having kids at home waiting on us to return, having a fiance being spread as thin as a piece of paper to keep bills paid and still see all of his kids, including the one in California. Meaning constantly going back and forth. He gets to be in California and be with Griffin and I, and then he’s back in Ohio to be with the other kids and to work. I don’t give him enough credit, no matter how many times I tell him how proud I am of him, it just doesn’t suffice. It’s more than just being away from the kids, he deals with the little things that pile up, that I would normally be there to take care of with him. And to top it off he has court for custody stuff that should be over (because we were awarded full-custody for good reason back in July). Unfortunately, some people are just so full of hate and jealousy that trying to remove their negativity is like trying to pry out a splinter that has been lodged for far too long, festering under the skin. He’s been working on that metaphorical splinter for what seems like decades but it’s a slow, painful process. So the result of our current “waiting period” is all the same, extraordinary amounts of stress. Stress from Griffin, stress from court, stress from the kids being upset about us gone, stress from normal life things such as bills, etc. It’s all a mess.

So back to “patience is a virtue”. How can one feel as though they’re able to be patient with what feels like the entire world on their shoulders? Tell me, please. Because if anyone has some superior enlightenment on how to be tension-free with everything that’s going on, I’d love to hear it. The problem is, if you’re not in my shoes, and you try to give me advice on our situation, the value of the advice is masked with ignorance. Not for lack of trying to understand what we’re going through as a family but just not being involved. No one is as deep in these trenches as Jarryl and I. It’s our son, ours and the kids lives that have been turned upside down. The best anyone can do is offer kind words soaked in positivity. It might sound as though I don’t want that, it’s just that it’s all I’ve been hearing for months and it gets to the point that it’s like a broken record. I know I’m strong, I know Griffin’s strong, I know Jarryl’s strong, I know the kids are strong, it just doesn’t mean that we should have to be. We should be at home, cuddled under blankets on the couch because it’s snowing and the house is chilly. Holding Griffin while listening to the kids argue over someone laying too close to the other one, or deciding what movie to watch next.

The point is, virtues suck. I don’t want to be patient. I want to have a plan. I want to know the next steps instead of being stuck in this unending game of unknown resolutions. But it’s not that easy, there are a ton of variables to consider before deciding on our next steps in this medical journey. The pacemaker hasn’t been placed back in yet, we’re still operating on temporary wires. Temporary wires, wires that are connected to his heart but advance through his abdomen and exit through his belly to connect to an external pacemaker. The wires are secured with only stitches and tape. Stitches and tape are keeping my child alive. Let that sink in.

Do we place a bigger shunt when the new pacemaker goes in? Do we wait and just place the pacemaker and do nothing else? Do we wait two more weeks or four more weeks? Do we continue to make progress on the vent or ease up a bit? Do we want to ween more sedation before the next surgery or leave it alone so he doesn’t withdrawal so bad? We’re literally walking a tightrope. One bad decision can have us falling off and plummeting to the unknown.  The questions and fear are endless, and this will never end. CHD is not curable, Griffin will never be “fixed”. A full repair does not mean he will not be back. There will be surgeries his entire life, for every child with this loathed disease.

And I might just be feeling extra irritable about the waiting game because yesterday was a milestone birthday. Yesterday I turned 30. And yesterday I didn’t have my family with me. I did, however, have my best friend. Flying 2,456 miles to make sure I didn’t spend my birthday alone. It’s an undeniable act of loyalty and friendship and I couldn’t love her more for it. She tried her best at keeping me happy and she succeeded, until I decided it was a good idea to get a couple drinks and cried at the bar once I started thinking about Jarryl and the kids. Ugly cried, I never cry when I drink, ever. Props to her again for helping me come out of it.

At the end of the day I just want Griffin to be as healthy as possible so we can make the journey back to Ohio. I’m just sucking at the waiting part.

Patience is the calm acceptance that things can happen in a different order than the one you have in mind. – David G. Allen

 

California Living.

I realized today that with all the updates I’ve done and blogs I’ve wrote, I haven’t really provided a full update on everything that has been going on out here in California. With that being said, I’ll provide a play-by-play on our Stanford journey up to today. This one is a tad lengthy so bare with me.

Lucille Packard Children’s Hospital Stanford – Palo Alto, California

We arrived here on September 12th with the expectation that we would be getting a room in the CVICU, however, the day we left they realized there weren’t enough beds so they accommodated us by placing us in the NICU until a space became available. Luckily we weren’t in the NICU long because it was a complete 180 from the NICU at NCH. Instead of a private room set-up it was “pods”, meaning there were 10 beds in one room and there was literally enough space for one person between each bed. This was completely different than what we had experienced thus far but we dealt with it.

Due to Griffins constant desatting (oxygen levels dropping below their preferred 75% for his condition – normally 100% for healthy people) we were moved to the CVICU quicker than they had planned.

Quick side note to anyone who doesn’t quite understand this; we all live at 100% oxygen levels. But TOF/PA/MAPCAS (Griffins diagnoses) babies live at lower percentages before their full repair because their blood is “mixing” in the heart chambers, meaning their oxygenated and non-oxygenated blood is mixing together because of a VSD (hole in the heart). That same under-oxygenated blood is then being sent out into the body via (in Griffins case, because he wasn’t born with a pulmonary artery) the aorta and MAPCAS. This is also why they are called “blue babies”, because they aren’t getting the proper amount of oxygen so they’re literally turning blue. Scary I know. 

We were in the CVICU for a week before Griffin starting coughing a lot, so they swabbed him and he was diagnosed with Rhinovirus (common cold) which then pushed surgery back 4-6 weeks. (This is because if he had the surgery while his lungs were fighting a cold, it would make his recovery 10x harder) This was a huge blow because we had fully expected to have the surgery within the next week and then be on the road to recovery. We also didn’t plan on being out here for much longer than a month, funny joke as we’re hitting the three month mark in two days…

Since Griffin would have to wait for the surgery but wasn’t stable enough to go “home” with us to the Ronald McDonald House to wait it out, they moved us to the step-down floor unit. It’s the same type of care, only its not an ICU. We were there for two nights before shit hit the fan.

September 30th, 2018

Worst day of our lives. We got a call from the hospital at 7:30am letting us know that Griffin had a started desatting and in turn his heart stopped working. (This is the reason “desats” are so scary. If your organs aren’t getting the proper amount of oxygen they will eventually stop working properly) The nurse informed me that they were currently doing CPR and had been for about 10 minutes. She wanted us to get to the hospital as quickly as we could.

We arrived at the hospital and learned that what they were calling his episode was an “arrest”. We all know what that means, Griffin had a heart attack. His heart stopped working for 30 minutes. The nurses did CPR the entire time and brought him back to life. We will be forever indebted to them for that. Everyone here performed a miracle by getting his heart pumping again and for taking higher measures and placing him on ECMO aka life support.

Seeing him on ECMO was hard, but not as hard as what was to come. And honestly, I think the fact that I knew it saved his life made it easier for me to handle. He was on ECMO for a total of 8 days. He came off on his 6 month birthday, October 8th, 2018.

Just to paint a picture, when a baby is placed on ECMO they are laying completely straight with their head turned to the side, and they aren’t allowed to move so they are heavily sedated and on paralyzing medications. This is because there are two large cannulas placed into the side of their neck. One is pumping blood into the body and the other is pulling blood out. Should a cannula be dislodged, the child would bleed out in minutes. It’s extremely risky but it’s a life saving measure to let the heart and lungs rest so they can heal.

He would have been on ECMO longer if it were up to the doctors but due to all of the blood thinners he was on he starting having blood in his urine. And even though there was so much blood thinners running through the blood, the cannulas had clots in them which could be very dangerous. So their hands were forced and they had to take the chance of taking him off and hoping he did well. Which he did. Proud mom moment. Once he was off the wait was back on for surgery. This time the surgeon didn’t want to take chances. He needed to wait at least a week to let Griffin’s body recover from ECMO but he couldn’t wait too long due to fear of another arrest.

October 19th, 2018

Griffin’s surgery day. They were able to wait eleven days after coming off of ECMO, giving him the best chance they could. They took him down and started the procedure around 8am with the intention of doing a full repair, meaning not only would they pull all of the MAPCAS to a centralized point and create a pulmonary artery, but also close the VSD. However, after a 15 hour surgery we finally got to speak to the man himself, Dr. Frank Hanley. The only surgeon who does the full repair in one swoop and the man who literally paved the way for this type of surgery. He is the TOF/PA/MAPCAS king and he is world renowned. He let us know that unfortunately (and as expected due to Griffin’s condition going into surgery) Griffin was unable to get the full repair in one surgery. This was because during the “flow test”, his pressures in the mapcas/shunt were too high.

This basically means that the blood flowing from his heart would have too much resistance getting to his lungs/body because the MAPCAS were so small and needed time to grow before closing the VSD and causing more pressure. If he were to close something with high pressures it would eventually lead to Pulmonary Hypertension, or heart failure. These are words that no heart parent wants to hear. 

He also let us know that due to inflammation, Griffin came out of surgery with his chest still open. Yes, you read that correctly, his chest was left open as to not put more pressure on the heart and lungs because there was so much swelling. When a chest is left open, it’s not covered with something that you can’t see through. We could literally walk up to him and see his heart and lungs pumping in his chest. It was mortifying but became abnormally normal to us during the coming days. It just became something that was, something that just had to happen to get him to the next step.

After surgery Griffin also developed “heart block”.

This is when the top chamber of the heart and bottom chamber of the heart don’t communicate. To better explain, when the top chamber pumps in a normal heart, the bottom chamber pumps at a specific time right afterwards. However, in Griffins case, his bottom chamber was taking longer to pump than it should.

So, in comes the pacemaker. On the day they finally closed his chest (October 29th, 2018) they also placed a pacemaker. Due to this he will need surgeries intermittently throughout his life to change the batteries. This was another blow but again, just something else that we have to deal with so he can be healthy.

Once surgery and chest closure were over we were on the road to recovery. It has just been a lot slower and more stressful than we anticipated. Since chest closure we have dealt with extremely high fevers, morphine withdrawals (these are awful), ventilator fluctuations, and infections. Due to all of this, and the length of time it was taking him to come off the ventilator, they decided that giving him a trach would be the fastest and easiest way to get him home and get him stronger. Jarryl and I talked about the trach for a week before we both agreed that they were right and it was just another something that he needed, but this was a hard decision. They decided to do a cath beforehand just to make sure the vent problems weren’t stemming from another heart problem, which it wasn’t. So they set a date and he was supposed to have surgery for the trach on November, 30th 2018. But that didn’t go as planned either.

The week of surgery his belly started becoming really distended so they got an x-ray and it showed fluid around the stomach. They did an in-room procedure and placed a tube in his belly to drain it. They were expecting abdominal fluid, but instead it was blood. They had no explanation on why his belly would be filling with blood. Luckily it started clearing up on its own that same day and continued to do so over the next two days. The surgery was set for Friday and on Thursday they “clamped” the tube in his stomach because it wasn’t draining much and there was no sign of blood. However, throughout the day Thursday, after clamping, it was clear that his belly was getting bigger and he was uncomfortable. When he started desatting they decided it was time to open the clamp to drain a little but they really wanted him to pee off the excess fluid. But when the doctor started pulling back the syringe to get fluid out, it wasn’t abdominal fluid. It was blood, again. And this time, they drained 800ml of it.

To put that into perspective, almost 1 liter of blood and fluid drained out. Adults can’t even handle that much fluid sitting in their abdomen, let alone an 8 month old baby. 

Everyone was in his room trying to figure out what was going on. They decided to start a blood transfusion because he had lost so much fluid and they were worried it would affect his blood pressure. It was then that Jarryl figured out the problem. Jarryl, not the doctors, not the nurses, but Griffins amazing father. He stood up to check on him and realized that the draining tube was turning more bloody again after the transfusion had started. We had already had previous issues with the PICC line so when he realized the blood was being sent via the PICC line it all made sense. After a few tests it was verified that the PICC line had caused a small tear in the vein during the heart cath a week before, which was causing everything that was being pushed through the PICC to end up in his abdomen instead of his blood like it’s suppose to. We were able to piece together on why it had been taking more medication that usual to get him sedated, they had literally gave him THREE doses of a paralytic just days before to place the tube because it wasn’t affecting him. Now we knew why.

Our poor baby wasn’t getting any of his needed medications like he was suppose to because of this tear. And thankfully, he handled it like a champ. Another proud mom moment. Luckily the tear was small enough to just heal on it’s own once they pulled the PICC line out and he wouldn’t need surgery.

December 4th, 2018

Trach surgery day. This day was harder on me than any other day. I’ve chalked that up to this being more permanent than anything else. ECMO was 8 days. Chest open was 10 days. PICC line problem was corrected immediately.

But the amount of time he will need the trach is unknown. It won’t be permanent, we know that, but he will probably have it for a couple years. And it’s so hard because the only reason he needs the trach is due to a narrowing in his throat caused by scar tissue caused by trauma from the ventilation tube. It just seems so unfair and it has hit me hard. It also makes me feel robbed. I had dreamed and dreamed of the day after he recovered from surgery to just pick him up without being attached to anything but a pulse ox (measures oxygenation in the body). But we won’t get that, we’ll have to deal with the trach tubes, and have to haul around a ventilator at home…I clearly have some of my own healing to do in order to be ok with all of this. But I’ll get there, I always do.

So here we are now, recovering from the trach and he has been doing amazing. Which makes him having the trach a little easier on this tired mama. He smiles everyday all day and he’s just so amazing to be so happy after being through so much. He makes me so incredibly proud. He is going through withdrawals again from being put back on morphine & dex for the procedure but the drips are off and he’s taking it day by day. Smiling at me even after he just vomited a little from the withdrawal. 

We still have a few weeks to go, our doctors think it won’t be until after Christmas before we come home. But with his history they want to be safe and make sure he’s ready, and we appreciate that even if it’s hard for us to accept. And in another six to nine months we’ll be back out here for his full repair. Hopefully the next surgery won’t affect him so hard and he will have a smooth recovery. Our family needs that. 

“Magic happens when you do not give up, even though you want to. The universe always falls in love with a stubborn heart”

Behind the Scenes

Everyday people across the world aimlessly pick up their phones and click on Facebook, Instagram, Twitter, or one of the many other social networks. There may be something they want to read in particular or they may just be bored, scrolling down their timeline. Every once in a while they’ll see something interesting or funny and tag their closest friends or family so they can share it with them.

I’ve thought a lot lately about posts that people share, painting a picture of their lives but really only skim the surface. They’ll write about the big things they want people to know but don’t give much detail on the process of getting there. This isn’t intentional, but people as a whole tend to care only about the main points and less about the details. This isn’t always a bad thing, people just get caught up in the moment and everyone is always on the go. We have busy lives and we want to get to the point, so even when we share our own stories, we minimize to get the point across.

I’ve realized that we have been doing that a lot with Griffin’s medical condition. People ask; “How’s Griffin?”, “When do you think you’ll get to bring him home?”, “How are the older kids handling this?”, “How are you and Jarryl?”. And we minimize, every single time. The same responses to different questions, “he’s getting better, slowly but surely”, “we’re okay, hanging in there”, “the kids are ready for us to be home but they’re okay”, “I’m not sure when we can come home, but hopefully soon”. And we leave it at that, and people take it and move on.

But the truth is, behind the scenes, things are a lot harder than we let on. We don’t talk about the anxiety we felt the day he had his 15 hour open heart surgery. Or the feeling of seeing him straight out of surgery and how his skin was almost purple and he was so swollen it looked like his face had been beaten with a baseball bat. I don’t talk about seeing his chest open for the first time (they couldn’t close his chest after surgery because there was too much swelling) and how it knocked me back for a second, seeing his tiny little heart and lungs in his chest, just beating away. Or how I got used to seeing it open, like it was normal, until ten day’s later when they finally closed it.

I don’t mention the multiple scars all over his body from being poked and prodded with needles. Or how we have to be the ones holding him down to be poked and prodded with those needles. We don’t talk about how we will literally sit and stare at the monitor all day to make sure his stats are where they need to be. I can’t even count on both hands how many times a nurse has told us to stop staring at the monitor because it will make us crazy, and they’re right. Because thinking about going home without a monitor to show us how he is doing fills me with so much anxiety it overwhelms me.

Mostly we don’t talk about how we’re feeling. I don’t talk about about how I cry in the shower every other day because I’m overwhelmed and it makes me feel better to let it out privately. Or how Jarryl will shut down and not talk to anyone until he can sort things out in his head on his own. We don’t tell people how the kids call us and cry because they miss us so much and how it tears us apart. Or how they’ll put us on Facetime and just sit the phone down next to them while they watch T.V. to make it seem like we’re sitting there beside them, talking to us about the show intermittently just like if we were home. Dreaming about us actually being there to hold them, laugh with them, play with them, and just be there with them.

The thing is, we’re not the only family that goes through things like this. Whether its another medical family far from home, a military deployment, or a job that takes you far away. People everyday across the world are dealing with huge issues but only share the moments they deem appropriate or enough to share. So the next time you ask someone how they’re doing, while dealing with something big, know that they’re only skimming the surface and be OK with that because maybe that’s all they can handle talking about. But know when they ask you to pray, send positive vibes, or send love, do it because that’s when they need it the most. That’s when they’re at their most vulnerable and they need all of the support they can get. It always takes a village.

“My dark days made me strong. Or maybe I already was strong, and they made me prove it” – Emery Lord