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March
19
2020

March 18, 2020

It has now been a week since John Henry has passed. This journey still feels unreal. I cannot believe that I left everything I know to move to Florida for my unborn son to have a chance at life on August 28th, 2019. We had no hope when we got our diagnosis back in July 2019 and found a doctor and staff that were willing to give him a chance. Everyone fought incredibly hard to keep John Henry alive, he went through 27+ days of ECMO, 8 intubations, 5 different hospital rooms, two different hospitals and three major surgeries. There were plenty of highs and lows through out this journey. Today, I want to focus on the good things that have transpired through out our journey as a last entry. 

I will start with thank yous. The staff at Johns Hopkins All Children's Hospital have taught me so much and I am eternally grateful for the connections that I have made. Grandma Susie, thank you for dropping everything and coming to stay with me in Florida for months; Veronica, thank you for teaching me how to comfort my son when I did not know what I was doing; Katie G, thank you for all of the fun and laughter that you brought to our room every time; Carol Ann, thank you for treating John Henry as a little boy and playing with him; Shannon, thank you for sharing your perfect lullaby playlist when he couldn't sleep; Sherrie, thank you for always getting him to smile; Ana Maria, thank you for helping him feel more relaxed; Katie (Child Life), thank you for helping me make memories and having keepsakes I will always cherish; Katie (CDH), thank you for helping me organize my day when there was a lot to balance; Music Therapy, thank you for helping me record the "John Henry Song"; Belinda, thank you for being a complete stranger and helping spread our story; Jill, thank you for helping make his last day special; Bridget, thank you for extubating him for the last time; Sherrie (Little Light of Mine), thank you for taking pictures that will last a life time; Hillary, thank you for being there for us on the last day; Dr. Stone, Dr. Smithers, Dr. Kays, Dr. Sochet, Dr. Thatcher, Tiffani, Stephanie and Hershel, thank you for keeping my little boy alive and giving us 5 months and 21 days together. There are so many others that touched our lives and changed it. The CDH crew and families in St. Petersburg, the countless people that have donated to our GoFundMe, and the Nerdy 30s Ladies of Kansas City, and most importantly my family and Joe's family have all taken care of me and my husband both financially and mentally.

Our last day together as a family was precious. We completed our first family project together, which involved some coordination and paint! I bathed John Henry and gave him a little man look with his hair, instead of the classic mohawk. Joe, John Henry and I took many family pictures together (courtesy of Little Light of Mine) that required three outfit changes for the adults and 5 total outfit changes for John Henry, a final extubation, several people to cover everything in white to make it look as normal as possible, and moving from the bed to our arms a number of times. John Henry was officially 59 cm long, weighed 5.285 kg and got his first haircut. He passed away in my arms listening to my recording of "Snuggle Puppy" by Sondra Boynton at 5:42 pm. 

Joe and I have decided not to hold a ceremony for John Henry, because our last day together was perfect.

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March
10
2020

March 09, 2020

We have some sad news to share. Last week, the neurologist and Dr. Kays let us know that John Henry's brain damage is more extensive than originally thought. He will probably not be able to move his legs, learn how to eat by himself and will have severe cognitive slowness. In addition, his lungs still have not started to recover from the injury they sustained in Orlando. So on Wednesday, March 11th, we will be discontinuing John Henry's care and letting him go. 
 
 
Over the next couple of days, Joe and I will be spending precious time together with John Henry. So we ask that people don't individually message us with apologies. Please keep us in your thoughts and prayers. We love you all. 

February
29
2020

February 29, 2020

A lot has happened in the last few days. 

On the 23rd, the team decided to get a liver and kidney ultrasound because John Henry's bilirubin increased significantly, which indicates liver problems. Instead, they found that he has gallstones and sludge in his gallbladder. Typically, the gallbladder would be removed, but he is too unstable to attempt surgery. Since then, the team changed his antibiotic to help improve liver function and his bilirubin decreased.

On the 24th, the neurologist talked with us about John Henry's brain damage. She was not clear on how this would affect his future. However, he is at a high risk for motor delays and processing issues. The hope is that no scar tissue forms in the areas of damage. Also, she mentioned that there is no area for the brain to make up for the damage because it is so central. We are hoping for a miracle at this point. 

On the 26th, Dr. Smithers performed a bronchoscopy at bedside in the hopes that he would find some blockage and be able to remove it from John Henry's airway. He was able to remove some thick blood and clots but nothing structural was found. As a result, John Henry was placed on his stomach for 18 to 19 hours to try to help his lungs open. By placing him on his stomach, the weight of his heart is off of his lungs which makes it easier to open.

On the 27th, John Henry's ECMO circuit was switched out. The part of the machine that was supplying his blood with oxygen was starting to have a hard time, so they replaced everything. 

As you can see, John Henry has been busy the last week. He still doesn't have any air in his lungs and the doctors are working hard to try to figure out why.

February
23
2020

February 23, 2020

Dr. Kays has spoken with us in regards to the results of the CT scan. He is not a neurologist, so he cannot tell us what the brain injury means for John Henry's future. He has told us that there is brain damage to the part that is associated with control of voluntary motor movements, procedural learning, habit learning, eye movements, cognition and emotion. I have seen most of these areas be impacted in John Henry's day-to-day life since weaning his sedation. Some of these changes are: lack of focus on objects, no movement in legs, no blinking when a light is shined in the face, "guppy breathing", and no facial expressions. My little boy is not the same after this trauma. We have a neurology consult in the next couple of days to discuss what this all means for the future.

The team has accomplished the first two goals of getting him on the road to recovery. They have been able to get all of the fluid off of him from the surgery and his sedation seems to be where they want it. Now, we have to wait for his lungs to heal and open again.

February
19
2020

February 19, 2020

Happy five months Mr. John Henry!!!!

What a crazy life you have led. Many ups and downs. You will continue to grow and get better.

Dr. Kays personally spoke with me a couple of days ago and delivered some hard news to hear. He believes that John Henry's brain damage is extensive. He went through a lot while in Orlando and he is not responding very well now. He is still on quite alot of sedation medication, so that could be contributing, but we won't truly have an idea until further tests are completed. We are planning to do a CT scan on Friday to learn more.

I will be going out of town until Friday afternoon. My biological mom is critically ill in the hospital. Please keep both John Henry and her in your thoughts and prayers.

February
16
2020

February 16, 2020

It has been confirmed that John Henry has been having seizures. Within an hour of placing the EEG, there were two seizures from different parts of his brain. A seizure is where damaged parts of your brain send out abnormal electrical signals to the rest of your brain causing your body to react in ways it normally wouldn't. The damaged brain cells can infect the surrounding brain tissue when the seizure takes place. So it is really important that the seizures are stopped. In order to do this, John Henry has been placed on an anti-seizure medication. Since he was placed in this medicine, he has not had anymore seizures. To tell how extensive the damage is, John Henry would have to get an MRI. However, his cannulas for ECMO are lined with metal and there must be no metal in the MRI machine. So until John Henry is off ECMO we will not know the extent of the damage. 

John Henry has to do a lot of healing before he is ready to come of ECMO. There is a hole in his left lung that needs to heal and both lungs need to inflate. The bleeding from the heart surgery has almost completely stopped. He only has two of the five chest tubes remaining. His echocardiogram showed there was no blood in his chest cavity. Next step, is to just let him heal.

February
15
2020

February 14, 2020

The doctors are continuing to monitor John Henry's condition. I haven't been showing many pictures because they aren't pretty. He has four different chest tubes that are draining blood from his heart surgery, he has three different medication lines, he is intubated and extremely swollen.

Today, there has been an EEG added. There is a lot of sedation on board and Dr. Kays just wants to make sure that there is no brain damage as well. Having low oxygen saturations and coding can all take a toll on the brain. We will hear about those results tomorrow when a neurologist comes in to personally evaluate him. They did two different EEG's in Orlando that said everything was normal. 

February
15
2020

February 13, 2020

I wasn't able to be at rounds this morning, however Joe was able to convey what the current plan is. The goal is for John Henry to stop bleeding from his heart surgery so that his lungs can start to heal. He will not come off ECMO until those two crucial parts are done. Right now, there is no timeline of when this may happen but the team is trying their best to let his body naturally heal. 

A lot of today has been focused on assessing how John Henry is doing. There was an echocardiogram completed today to check how his heart is functioning, how his bleeding is progressing and how his cannulas are placed. So far, everything looks good. The doctors were able to remove the chest tube from the pneumothorax and two other medication lines they placed during his stay in Orlando.


The wound team came and evaluated John Henry's skin and they found 4 pressure sores from being in the same position the majority of the week. These take time to heal and the best medicine is to keep weight off of those areas. So the nurses will be mindful of positioning.