As was mentioned in a previous post, Phoenix Children's Hospital held a special Heart Day gathering for the transplant families and associated staff. It was a celebration of these strong children and a way to bring some awareness and appreciation for everyone involved. Additionally, it was a good excuse to eat some delicious red velvet cupcakes.
|The real reason everyone showed up.|
The event had a very good turnout with some heartfelt talks from many doctors and parents. Unfortunately, Emily had to go it alone today because Max had a few procedures during the event that I needed to stay in the room for. He was pretty scared during his echocardiogram today so I was really happy I decided to stay back with the boy. Plus, he had some other issues arise this morning that required one of us to be here, but I will get into those later.
Since I wasn't actually there to hear Emily speak, I imagine it was something like this:
|Obviously, Emily got a haircut. Get used to it.|
From everyone I talked to about the event, it seems that after Emily spoke, there wasn't a dry eye in the house. This is no surprise because she is always able to overcome any situation she is thrown into. Even though it seems insignificant among everything else, I am proud of her for going it alone today, getting up in front of a room full of strangers, and talking about the most difficult time in our lives to date. It is more than most can handle. She is an amazing woman and inspires me on a daily basis.
|Especially because this is me.|
|Or even this.|
Yesterday, Emily noticed some slight swelling around the left side of Max's neck. This was strange because he hadn't had any lines or other irritations in the area leaving nothing obvious that should have caused this fluid retention. We discussed this issue last night at rounds and the doctors wanted to monitor it until the morning and see if it changed at all. Unfortunately, Max was a little more swollen this morning and no one was quite sure what exactly was causing this slightly drastic enlargement. During the echo--which went absolutely fabulous and Max's heart is pumping strongly and consistently--the tech tried to take a look at his neck, but was unable to get a good picture, especially since her expertise centers on imaging the heart.
|This is pretty much what it looked like.|
A general ultrasound technician came by in an attempt to get a better look at Max's neck and try and determine what was going on. Luckily, they were successful at finding the source of the swelling and able to get going on some treatment for the little guy. Turns out, Max developed a blood clot near the external carotid artery which has caused the fluid retention in his neck. To make sure this didn't affect the flow to his brain or that he didn't have any other clots or brain hemorrhaging, Max had to have another ultrasound on his brain and related vessels. Luckily, everything else looked good and they were able to start him on blood thinners by this afternoon. We met with an additional small team of doctors, Hematologists to be exact--doctors with an expertise in the blood--who did a quick family history and explained what they would be doing to help Max with the clot.
|So. Many. Physicians. So. Many. Names.|
They seem fairly confidant that the blood thinners will do the trick, but if not, they have a bag of tricks they can use to try and clear the clot, such as a surgical catheter that will go in and break things up. Since the clot is in his neck and could potentially slow blood flow to his brain, they are going to keep a close eye on this specific issue over the next week and make any changes to the course of action if necessary.
Heart Day speed bump number one: Check.
As many of you are aware, Max was extubated about 60 hours ago and did fairly well for the first 8 of those hours with little more than an oxygen cannula. However, his lungs started to fill with fluid and he required some respiratory intervention in order to help clear his lung and keep it from collapsing. His lungs looked remarkably better yesterday, but he had some additional trouble throughout the day today. His chest x-ray looked a little hazy in that left lung again this morning, and it turns out that his lung actually did collapse the night before. They tried to put in a ram cannula--a nasal oxygen tube that forces pressure down into the lungs in order to forcefully expand them--and it worked for a while, but his numbers started dropping throughout the afternoon. In an attempt to get things back on track, Max was hooked up to a device known as a "Scuba," which is a step up from a ram cannula but nowhere close to a full intubation.
The name itself perfectly describes the device. I kid you not, it looks like this:
|Life is fun isn't it, Max? Hopefully, this is just preparing him to be the first astronaut with a heart transplant.|
He looks like some sort of soldier marching into battle with a mustard gas mask on. Naturally, he would be a member of the "infant-ry."
The masked helped quite a bit, but like with everything else, there were some unwanted side effects. Since the mask creates a seal around the entire face, naturally some extra air is forced into the stomach. For Max, this extra air is hard on his little belly, so he threw up a couple times with the mask on, which was absolutely terrible for him. After the second time, which was about four hours into the treatment, they removed the mask in favor of a ram cannula again. As of this moment, his numbers are steady and his oxygen levels are looking good; hopefully, the scuba gear worked his lungs enough top help clear the secretions and help him on the road to breathing unassisted.
Heart Day speed bump number two: Check (for now).
While all of this was going on, a few Phoenix news stations were at the hospital for the Heart Day party and to get some adorable footage of Might Max. Between scans, swelling, suctioning, and tests, we briefly sat down with Channel 3 for an interview about our journey thus far. Since Max is the youngest person to ever receive a heart transplant in Arizona, and much of the world for that matter, he is kind of a mini-celebrity among certain groups. The interview went very well, and even though the sound clips featured were mere snippets from the longer discussion, the station did a very nice feature about Max, his incredible surgeon, and our good fortune. The news anchor and the cameraman were extremely friendly, accommodating, and seemed truly compassionate for Max and his journey. They were respectful of his quarantine precautions and respectful of us. It was a truly nice and noninvasive experience.
(Note: We will post a video of the segment as soon as it appears online).
Although today was hectic at times and filled with a lot of mixed emotions, constant struggles, collapsed lungs, and blood clots, it was still an incredible day.
After 11 gruelingly long days, Emily finally had a chance to truly hold her baby this afternoon.
|For the first time, Max was genuinely happy.|
|Even with the swelling he is the most beautiful boy I have ever seen.|
Max is teaching us that even the darkest of days have a fantastically beautiful silver lining.
Thank you, son.