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”

Giving Credit.

In the world of most under-recognized professions, nurses are definitely towards the top of the list. I don’t think that’s because people think what they do isn’t important, but more that people just always turn toward a doctor or surgeon to get information. Nurses, unfortunately, get overlooked often.

However, we’ve been in the hospital for eight months straight so far. Anyone who has spent a lot of time in a hospital, knows finding a good nurse is like finding gold. We’ve had every type of nurse imaginable. And although we haven’t felt that every single one of them was a good fit for us, that doesn’t mean they weren’t a good nurse. It just means that we didn’t click with him/her and we preferred someone else. Our biggest indicator for a good nurse is obviously how she acts, treats, and provides for Griffin. Obviously we want someone who gets along with us as well but a nurse that goes above and beyond for him is everything.

Just a couple of feel good nurse stories throughout this experience:

  • Our primaries at our home hospital during our NICU stay paved the way for Griffin to be successful. I have already told them personally but if it weren’t for them, Griffin wouldn’t be here today. It makes me emotional talking about it but they saved his life. The doctors wanted us to withdraw from Griffin twice, believing there was nothing else that could be done for him. But our nurses weren’t having any of that. They advocated for him to the point of getting in trouble themselves because doctors thought they were a little out of line. (They absolutely were not) One of our primaries stepped up and despite the fact that she could have gotten in trouble (which is absurd) she told us to look for second opinions. We didn’t even know that was an option, so that alone means everything to me. Without her we probably wouldn’t have found Dr. Hanley at Stanford. I don’t like thinking about the possible outcome if that hadn’t happened.
  • His primaries there showered him with so much love and attention that you wouldn’t even have known they weren’t related to him. We’d come into his room and he’d be wearing another new outfit or have another toy that they had bought personally and brought in for him. They would plan out times on when the family wouldn’t be there so they could finally have a chance to hold him. (Even though we always told them that they could hold even if we were there) I can’t explain how much it warmed my heart to log in to the Nicview cameras and see one of them sitting in his room charting while he sat in their lap. They’re family to us now and always will be.

When we came to California for Griffin’s surgery we were worried we wouldn’t find the same type of care for him. Not because the nurses here aren’t amazing, but because they didn’t know him yet so he wouldn’t be loved on as much. But we were completely wrong because he touches the hearts of everyone, every where he goes.

  • Not only do the nurses here have SO much knowledge about Griffin’s condition (because this is the meca for MAPCAS babies) but they humbly explain every little thing to us. I have learned so much about his condition here from our nurses, it’s truly unbelievable.They also take the time to make sure we feel as at home as possible. They help me decorate his room with pictures and cut outs. They make sure we have everything we need, even offering to go get us a water or snack. And holidays are special even though we’re not with family.
  • We weren’t expecting to be here during any holidays, let alone three. So when Halloween rolled around I was upset that I didn’t get to spend it with the kids back in Ohio like I had originally planned. Griffin’s nurse that day went above and beyond to make it special here as well. Going out and not getting just one outfit for him to change into, but three. And one of them was such a hit that I still have people coming up to me asking to see a picture. Doctors came in and had me send the picture to them so they could show other people. Now that the picture is up with others on his room door, everyone can enjoy it.
  • I think the moment that surprised me the most here was one day when Griffin had a new nurse. She was so sweet and listened to all of my tricks on how to make him happy if he got upset. The main thing he likes is having his head rubbed (simple I know). I didn’t expect her to actually spend time doing any of these things because she had another child to care for as well so she was busy. However, while I was sitting on the couch, I heard her humming and I looked over and she was giving his tiny little forehead a massage. Not because he was upset, but just because. She was just standing there singing to him and rubbing him while he stared at her with happiness in his eyes. I was immediately emotional because that’s all I want, for him to receive as much love as possible.

People forget about the nurses. But they’re the force behind everything that happens at a hospital, doctors office, clinic, you name it. They’re the reason so many children and adults get to go home happy and healthy. Yes, the doctors and surgeons work their magic and get the big things done. But the nurses are the ones standing there all day, watching the monitor, checking the temperature, giving the meds, calling the doctor with any observation they see that warrants attention. They’re the ones on the front lines with the family, consoling the crying mom and answering the dads questions. They’re giving motivational speeches to the parents on how life will change after their child comes home with a trach, or pacemaker, or G-tube so they can have some comfort.

Nurses literally make our world go round and I don’t know how to thank them enough.

A quote for my nurse friends…

 “they may forget your name, but they will never forget how you made them feel” – Maya Angelou