Wednesday, February 26, 2014

Learn All the Things!

We apologize for the lack of updates over the last few days, things have been so busy for us! Max is doing extremely well and the medical staff is looking at discharging him soon. Initially, there had been talk of sending him home tomorrow but unfortunately, we have one final issue before he's able to go home. One of his medications can cause his body to lose most if not all of its magnesium and we need his magnesium levels to be steady before he can go home. This isn't really a big surprise to us since his main doctor called it from the beginning that the magnesium was most likely going to be what keeps him at the hospital. And really, of all the issues he could have that are delaying his homecoming, we'd rather it be something relatively minor like his magnesium levels as opposed to, say, his lungs collapsing again.

I Googled "happy lungs" and this is what happened.

His new tentative release date is Monday but in the meantime, our transplant coordinator has been moving forward as if he were still being released on Thursday in terms of teaching us about all the transplant education we need to know for Max's care. We've also been meeting with a ton of different specialists who have been laying out each of their plans for Max, such as a nutritionist, physical therapist, etc. It's a lot of information but I think we're doing pretty well so far.

Initially I thought learning about all 14 of his daily medications would be daunting but so far, that's been fairly easy since we've been so involved with his care and sitting in on morning and evening rounds. What was daunting, however, was learning how to put in Max's NG tube which is the tube that goes in his nose and down to his stomach for his meds and feeds. Jon tried first the other night and it was a traumatic experience for everyone. We didn't like our nurse that night and she wasn't very helpful and kept snapping at Jon and giving unclear instructions. Max was screaming, I was crying because Max was screaming, and Jon felt so horrible about everything and everybody that he was on the verge of crying, too.

Pretty much.
The nurse ended up putting the tube in herself and Jon and I were both left a little gun shy at the prospect of putting the NG tube in ourselves. Yesterday, however, Max decided we needed some practice and he pulled the NG tube out of his nose (which is exactly why we need to know how to put it in). We had a much more supportive nurse this time and I was able to get it on the first try.

This is meant for me.
I'll try not to hurt my arm patting myself on the back.
We've been able to do the bulk of Max's care in terms of administering his meds, bathing him, changing his diaper, etc. (under nurse supervision of course) which is nice because we've been able to basically practice everything we'll need to do at home. In between all that, we also get to spend a lot of time holding him and playing with him.

Seriously. This face. I can't handle how cute he is.
Today Max also had to do something called a car seat test which means he had to sit in his car seat for 90 minutes and then we'd see how his stats looked. We figured that since he loved the bouncy seat that'd be an easy transition to the car seat, right?


His stats looked good throughout the test but he was GRUMPY. There were a couple factors that played into his mood but overall it was not a super pleasant experience except for the few times he managed to fall asleep. The nurse assured us that she was sure he'd do better in the actual car because of the vibrations and movement. At this point, I'm just hoping that his results are good enough to where he doesn't have to repeat the test.

Tomorrow is going to be another full day of learning. We've received a few machines to monitor his stats at home as well as a machine to feed him through his NG tube until he's able to feed orally so everyone is making sure we're up to speed on how to properly use them. Hopefully we won't have to use the machine for his feeds for too long though. He really needs to gain weight so we'll have to continue to fortify breast milk with formula like they do here so he can get the extra calories but the goal is to eventually move him over completely to breast feeding. He's been making impressive strides with bottle feeding according to the speech pathologist so we're hopeful that we'll be able to move him off the feeder sooner rather than later.

Thank you all for your continued love, prayers, and support! And thank you to those of you that have donated to his fundraiser. To everyone, we're overwhelmed by and appreciative of your love and generosity :-)

Saturday, February 22, 2014

Learning and Leaving (Soon!)

Max has had a really great couple of days. The doctors and nurses have been weaning him off of his oxygen tubes, the physical therapist said he's making great progress in loosening up his shoulders, and we've been getting to hold him a bunch.

Sleepy baby!

Snuggly baby!

Yesterday, we got the best update on his health of all. As long as things keep going in the direction they're going . . .


I think Max is on board to get out of the hospital soon.

The actual date seems to be up for debate though because everyone on the transplant team has a different time in mind. One of them says as early as Tuesday, another says the first week of March. Either way, they're all planning on sometime in the next two weeks which is amazing. Of course, once he's discharged we're still going to pretty much live at PCH because of all of his clinic visits and appointments but at least we'll get to have him at home with us.

This will be our house every night.

 The doctors and nurses have started training us on all his medications and they're starting discharge procedures. Under nurse supervision, we're able to give him his meds, change his diapers, bathe him, and overall be much more involved in his care which is great. Tomorrow we're going to learn how to insert his nasal tube for his meds and we've also meeting with various specialists such as a physical therapist, nutritionist, and speech therapist (for breast feeding, not for speaking).


Before we're released into the wild with him, we'll also do 24-48 hours of what's called "nesting" where we'll stay at the hospital and do everything like we would at home with Max. The nurses and doctors will be there as a backup, but they want to make sure we have a handle on the care he'll need once he's home.

In the meantime, he's looking great! His stats are good and he needs less and less respiratory support (he's nearly weaned off his oxygen tube). The nurse brought in a bouncy seat today so it looks like we'll try that out later and see how he likes it. I'm sure there's some kind of medical reason behind it like the car seat test (Max will sit in his car seat for 90 minutes while being monitored to see how he does before we take him home) but hopefully Max will have some fun, too.

Wednesday, February 19, 2014

A Sleepy, Happy Boy

Today was a wonderful change from the chaos and worry of yesterday. Max has had a really wonderful day today that was mostly filled with snoozes.

Falling asleep listening to some music on Dad's iPad.
Today he got the chest tube out that had been put in to fix his lung and his PICC line was removed as well. A PICC line is a peripherally inserted central catheter which is essentially a central line that was inserted into his foot and went all the way up by his heart. He's had that in since the day he was born but it was great to get it out. It's also good because that means that the nurses are administering more and more of his medication through his nose tube which is how we'll give it to him when we take him home. He's starting to have fewer and fewer tubes and wires in him which means we can see more of his cute belly which is, of course, fun for us.

Max's main doctor and the hematologist checked out the ultrasound from last night to review the blood clot in his neck. The swelling has completely gone away and after reviewing the ultrasound, the clot appears to be located in one of three veins in his neck. The clot is not completely blocking the vein so it's letting a little blood flow around it and since it's one of three veins, Max's body has already started to reroute the blood through the other two. Any clot is bad but on the relativity scale of blood clots, this one isn't too bad. The doctors have stopped the blood thinners and have moved over to using baby asprin as a blood thinner for a few days and then they're going to do another ultrasound and reassess the clot and the course of action. If the clot seems to be breaking up/going away, they'll continue with the baby asprin until it's gone. If it doesn't, they'll get more aggressive with blood thinners so it doesn't become a bigger issue. The doctor also said that sometimes a situation like this just needs a little bit of time and Max's body might just work itself out.

During evening rounds, we found out that while we were at lunch, Max had a brief run of ectopic atrial tachycardia (EAT) that caused his heart rate to jump up to 185 bpm and it lasted for about 45 seconds. EAT is very similar to SVT which Max had during the terrible, horrible, no good, very bad day. This time, however, his heart rate didn't get nearly as high as it did before and it worked itself out. The rest of his stats also stayed good during this brief run. He's on a medication to help control this and it was just about time for his next dose when the EAT happened and it hasn't happened since. We weren't super happy to hear about it for the first time nine hours after it happened during evening rounds so we're not really pleased with the nurse we had today.

Overall, it's been a great day for Max. Aside from the minor run of EAT, he's done extremely well today and we're thrilled that everything looks good. When he woke up this evening, Jon and I got to help out with his bath again and he was very alert and interactive. He doesn't need to be sedated as much anymore so we got to play with him for a bit which was super fun.

This is the cutest baby ever.
He's never going to do anything wrong.

We're so glad that he was able to sleep so much today to help him heal but we love that we got to have some fun with him, too. It's so easy to get bogged down in all the medical stuff because it's obviously a big part of our lives, but it's really amazing to have those moments when we just get to be parents and have fun with our baby boy.


Tuesday, February 18, 2014

Smooth Seas Do Not Make Skillful Sailors

After two fairly good days with Mister Max, we had a few more scary moments today that left us feeling utterly exhausted and increasingly scared. We knew it was going to be a difficult ride, but I don't know if anything can quite prepare one for such an uncertain and turbulent future.

This is our theme from here on out. 

Upon arriving at the hospital this morning, we found that Max's final chest tube was removed, which is great seeing as how they generally are not kept in longer than a week for fear of infection (this is the ninth day of that particular tube). Unfortunately, the nurses told us that he had been nearly inconsolable since the removal of the tube despite light sedation. He seemed really uncomfortable and didn't quite look himself. He was getting an echocardiogram, something he usually sits for very well, but his numbers weren't great and he seemed like he needed a break. After trying a few things to comfort him, his oxygen numbers began to quickly de-stat and Max started to lose color in his face, and his eyes began to glaze over. I grabbed our nurse from the adjacent room--she had two patients today--and told her what was going on. She quickly came in and started turning up the oxygen on Max's breathing machine. After the O2 saturation was pumping out 100% and Max's numbers were still dropping, our nurse grabbed nearby doctors who were fortunately making it towards the room for the morning rounds.

Once again, right place right time.

Almost instantly, we had 12 physicians and nurses in the room trying to figure out what was going on. They rushed an x-ray machine in to get a look at Max's chest to see why he couldn't breathe. The RT on duty today rushed to go grab a scuba mask again; even though Max was having difficulty breathing, we knew this was a bad idea and would only set him back further. I voiced my opinion on the matter, but they tried to use the horrible mask, again. Luckily, with my protest and the insist of the attending doctor on duty pointing out how distressed Max was getting while simply trying to put the mask on him, the mask was put aside in favor of a manual bag valve.

We all hate these. I threw them away after this morning. 

Once the x-ray was completed, the doctors immediately noticed that his right lung--the good one--was collapsing like a balloon. When the large chest tube was removed, a decent amount of air entered Max's chest cavity and was putting pressure on he lungs from the outside, a condition known as Pneumothorax, which is simply a collection of air or gas in the space between the lung and the chest wall. Basically, Max had a lot of air where air is never suppose to be.

Obviously, this is not a good situation to find oneself in.

The doctors explained that in order to get this pressure and air out of Max's body, he had to have an emergency procedure to put a chest tube back in near the problem lung. Luckily, this tube is about 1/10th of the diameter of the last one and therefore wouldn't be nearly as uncomfortable for the little man. The room was getting a bit overwhelming and it needed to be sterile, so we decided to try and go for a walk while they preformed the quick procedure. It wasn't doing either of us any good just standing there feeling utterly helpless while they tried to keep oxygen pumping through Max's system.

About 15 minutes later, we returned to the room just after everything was being finished and a post x-ray was being taken to see if the tube was placed properly and if the lung was looking better. Fortunately, Max started to respond immediately and his O2 stats started to climb again. We were able to let out a small breath of relief and hope that we got the stressful situation out of the way for the day.

Our wonderful nurse did a great job at putting off some of Max's tests and labs so that he could have a few hours to just rest and take things easy after such a stressful morning. A surgeon came by shortly after the tube was placed to check it out and to put a couple stitches where the other tube was removed earlier. This was an extra precaution to keep any air from entering the chest cavity in the future and will hopefully keep those wounds a bit more protected.

Other than a couple other minor tests and medical changes and briefly getting out of the hospital for a real person meal, the rest of the day went really well after such a rocky start. We had some good friends from Flagstaff come visit us as well as Max's godparents. We were glad the morning calmed down enough so we could all have a nice moment together.

Emily helping give Max a bath last night

Later in the day, one of Max's main physicians returned after a temporary absence over the last few days. He was briefed on the blood clot in Max's neck and was concerned because there is no logical reason for it to have formed where it did. Even though the swelling is down, an ultrasound showed that the clot is still there, but Max's body has adapted to it and started to reroute blood around it--pretty cool when you think about it. His Doc didn't like the blood thinners Max was placed on, so he changed things around a bit to hopefully get the clot moving, but he said that Max's body will likely have to do most of the grunt-work to get the obstruction removed. Luckily, it is in a vessel that isn't absolutely crucial for blood flow to the brain, so there is no immediate rush to try and surgically remove the clot. They are going to keep a close eye on Mighty Max to make sure that no other clotting issues arise, so hopefully this is a one-time occurrence as a result of the heart transplant or something related.

Also, as of tonight, the chest tube looks to have removed everything it could, so it could be removed as soon as tomorrow. Let's hope for no lung collapses this time...

Even though the start to today was horrible once again, we are still moving forward and Max is making small advances each day despite some major setbacks. Fingers crossed for a better day tomorrow and a continuation of improved health!

Let's also hope Max starts to gain a little weight, he is starting to look a bit like Benjamin Button.

Yeah, time to chunk up, Max!

Monday, February 17, 2014

The Arrival: The Birth Story I Forgot to Post and an Update on Mighty Max

Max is two weeks old today and I can't believe how much has happened in just fourteen days. My husband reminded me today that I never posted my viewpoint of the birth story like I wanted to and since Max is exactly two weeks old, it felt like a good time to do it.

I'll try not to do this.

On Monday, February 3rd, my husband and I arrived at the hospital early in the morning. I was pretty freaked out, not only at the fact that we were about to have a baby and the whole heart transplant process was really about to begin, but I was really nervous about having a C-section (more on that in a minute). We arrived at the hospital and I was checked into the OB triage where they prepped me for surgery. One of the doctors who came to see me turned out to be the confused doctor I talked about in a previous post in December. She examined me and went to leave but she quickly returned and asked if we were expecting to see the perinatologist we'd been seeing for my OB care. I said yes since we had scheduled my C-section specifically to be delivered by her. The doctor then informed me that the perinatologist was on vacation but she would be performing my C-section instead.

Luckily she had two other doctors working with her and the confused doctor turned out to be much more competent in the OR than at the office.

I also had a special bonding moment with my nurse, the anesthesiologist, and one of the other doctors who all turned out to be Broncos fans. As it was the morning after the Superbowl of which we do not speak, we all commiserated together while they got me set up with anesthesia.

I know, Peyton. Me, too.
Once I was set up on the table, they brought Jon into the OR in his bunny suit (and in case anyone is wondering, it took two caps to cover all of his dreads). We quickly discovered a few things about C-sections at this particular hospital:

1. We were under the impression that there would be a screen of some sort put up between my face and the surgery that was going to happen. While they did put one up, it was basically a splash guard that barely covered my face. There was no physical barrier protecting Jon's eyes.

2. There was a mirror on the ceiling that was positioned in a way that I could see EVERYTHING. I didn't want to look but there were a few moments that it was like a car accident: you don't want to look but your eyes are magnetically pulled towards the scene.

3. One of the things I've always valued about my relationship with Jon is the way that we truly understand each other and the way we can see into one another. I'd always thought that this would just be a metaphorical sentiment but like I said--the "screen" barely covered my face and offered no protection for Jon. He didn't want to look (and tried very hard not to) but it was kind of all laid out on the table. It's a new level of intimacy that you kinda hope you never reach with another person.

Once Max was born, we heard the tiniest little squawks and I immediately started crying. The NICU team who had been standing by cleaned him up a little and wrapped him in a blanket before bringing him by my head. The NICU doctor told me that he was okay but he needed some work so they had to take him right away to stabilize him. They brought him close to me so I could have my first physical contact with my son--a kiss on his forehead--before they rushed him to the NICU.

Jon went with Max while the doctors finished my surgery and it felt like it took forever and a day even though at most it was another 45 minutes. Once they had me stitched up, I was taken to a recovery room for two hours while the anesthesia wore off before I could go to the NICU to see Max. That time, coupled with the remainder of my surgery after Max was born, felt like the longest hours of my life, knowing that after carrying him for nine months, our baby was here but he wasn't with me. After making sure Max was settled in the NICU, Jon came and sat with me to keep my company while I waited and told me that Max was okay, he was beautiful, and he had big feet.

After my time in the recovery room ended, a nurse wheeled my bed into the NICU so I could finally see Max. I was completely overwhelmed with so many emotions when I saw him but most of all, I felt so thankful that he was stable and that he was okay.

Our first picture together.

I wasn't able to stay in the NICU for long and I was then taken into my room. Jon bounced back and forth between the NICU and my room and at one point, he told me that although Max was really stable and fine to stay where he was, they wanted to move him over to PCH in order to get him a room in the CV ICU (space was apparently getting limited) and, we later found out, to hurry up and work on getting him on the transplant list. Apparently one of our doctors at PCH texted one of the doctors at the delivery hospital somewhere in the neighborhood of fifteen times after Max was born. They had planned on taking Max at 5pm so at around 4pm, I had the nurses load me into a wheelchair and take me into the NICU so I could spend some time with Max before he was transported.

Luckily for me, the transport team was running behind and they ended up not moving him until nearly 8:30pm so I got to spend nearly four hours with him. About halfway through my time with him, it occurred to the nurses that I hadn't come back to my room so they hunted me down to give me pain meds through my IV. In retrospect, it might not have been the best idea to be anywhere but resting in my bed so soon after surgery but I knew this was my last chance to see Max for a couple days and there was no way I was going to miss out on that (I think that's also why the nurses let me stay where I was instead of insisting I get back into bed).

Nurses rock my socks.
When the transport team arrived, they let me stay next to Max while they prepped him for transport. He held my finger the whole time.

Saying goodbye to Max that night was incredibly painful but I knew I had to focus on healing myself in order to be able to be there for him with everything he was facing.

When I found out I was having a C-section, I had read books and gone online to try and research C-sections to try and mentally prep myself and try to figure out what to expect. What I found instead was a lot of C-section shaming where the general sentiment was, "If you have a section, you're basically a failure for not going through labor pains like the rest of us and you're just a victim of the medical industrial complex."

Yeah, I'm looking at you, Ina May.

Max's need for a heart transplant and the fact that he was breech (he was lying sideways and facedown in my belly. I don't know what he thought he was doing) necessitated a C-section but honestly, I think everyone has the right to choose to give birth in whatever way they feel is right for them. And anyone who says that C-sections are easier can suck it. Seriously, that shit is awful. While it's true I couldn't feel anything below my chest during delivery . . .

. . . the aftermath was terrible. I had a not so fun reaction to anesthesia (read: vomit) and everything was super painful (until the sweet, sweet relief of hard drugs kicked in) and even now I'm not supposed to lift anything heavier than 10 lbs for another month.

Jon has to carry all my things.
I was released from the hospital two days after delivery for a couple reasons: 1) I was actually doing really well and 2) I think the doctors and nurses felt sorry for me that I was away from Max. But I trust that they wouldn't have released me if I wasn't doing well enough and I've been doing really well with recovery thus far (the pain meds helped).

The Max Update

The last couple days have gone pretty smoothly for Max. Yesterday he seemed like he felt fine but his heart rate was still up in the 180s. He had a big morning of echos, EKGs, and breathing treatments (plus he was regular baby fussy starting at about 4am) and then he was finally able to fall asleep and rest during the afternoon.

Today was another really good day. His usual Monday morning labs (echo, EKG, x-ray, etc.) showed that his lungs are slowly improving and we're thrilled that he's moving in the right direction. We also met with a physical therapist who showed us some exercises we can do with Max to get stronger mobility in his limbs since post-surgical babies have to be splayed out for a few days and it makes their joints stiff. He responded really well to the exercises which is a good sign that it shouldn't take too much to get him back up to speed.

The best news of all, however, was that at about 3am this morning his heart rate dropped back down into the normal range in the 130s-140s which was a HUGE relief. Max also got one of his chest tubes removed today and he seems much more comfortable. The tube was scheduled to be removed anyway but Max got the process started when he got his foot caught in the tube and partially kicked it out. Our nurse quickly got one of the doctors and they finished taking it out right then and there.

"I make my own medical decisions."

In other exciting news, Jon got to hold him for the first time today!

I also got a chance to hold him again this evening.

I also got to help give him a bath tonight. He seemed a little unsure at times but overall I think he enjoyed it.

"Don't know if like . . ."

Saturday, February 15, 2014

Max and the Terrible, Horrible, No Good, Very Bad Day


When we arrived at the hospital early this morning, Max was wearing his scuba mask to get a breathing treatment to try and push his lungs open. Apparently he had had an x-ray that morning and his lungs had looked worse than before, meaning there was a lot of fluid build up and they weren't very strong, especially the left one which is the one that collapsed the other day. Unfortunately, with the way the scuba mask works, it shoves a lot of air into his belly and it makes him vomit. A lot. At one point, he threw up and I had to quickly turn his head to the side to keep him from aspirating his own vomit while Jon found a nurse to help clean out his mask (more on why we couldn't find one in a minute). When we were finally able to see a respiratory therapist, he worked for an hour trying to figure out alternate ways to give Max breathing treatments and he finally found one that seems like it'll help. Everyone would really like to avoid Max having to be re-intubated and his chest x-ray this afternoon showed an improvement in his lungs which is promising.

Getting to the point where his lung seems to be improving was kind of a chore today. Nothing seemed to be working between all the vomiting and the difficulty finding a nurse (again, more on that in a minute) until we finally put Max on his stomach. The doctor told us that that can help because gravity will move the heart forward a little and alleviate some pressure on the lungs and literally give him some breathing room. Initially this worked out well but then Max realized that his face was turned to one side and if he rubbed his face along his blanket, he could pull the ram cannula (his oxygen tube) out of his nose. I don't blame him for wanting to get the tube out of his nose but it was really important for him to leave it in. Plus, he kept trying to lie face down on his blanket which, naturally, scared the bejeezus out of me. We finally got him to settle though and he was able to sleep like that for about an hour before it was time for his next x-ray.

Now to explain the nurse shortage. We always have a nurse assigned to Max but sometimes they have two patients they're watching, particularly on days like today when there were only a few staff members on duty. Max's nurse today had a second patient and her other patient, who was two doors down from us, went into cardiac arrest. They had to call in one of the surgeons who showed up in the CV ICU in his running shorts and pretty much leaped into scrubs at the nurses' station across from our room before doing emergency surgery in the patient's room.

Normally this wouldn't be a big deal for us because obviously, the patient that's coding takes priority. However, Max kept vomiting in his scuba mask and his heart rate was about 20-40 points higher than it normally is and the CV ICU was kind of understaffed today. Our nurse needed to pass Max off to another nurse because she had to focus her efforts on her other patient that went into cardiac arrest but luckily for us, this turned out to be a blessing considering what happened next.

Our new nurse came to fill in for a few hours and we're so thankful that she came when she did. Shortly after she arrived, she was doing her normal checks on Max (temperature, diaper, etc.) and the last thing she was going to do was pull out some excess air from his belly through a tube in his nose. Between the scuba mask and the other breathing treatments, poor Max had a ton of extra air in his stomach which was causing him a lot of discomfort. When she went to pull out the air with a syringe, something that has happened to him many times before without incident, it was like a switch flipped and Max's heart rate shot up from 180 beats per minute (bpm) to 215 bpm. At first we all thought Max's monitor was malfunctioning but we quickly realized it wasn't. Our nurse stayed very calm and collected and grabbed the attending on duty, the respiratory therapist, and a few other people to get in Max's room to help him.

I think this is the most scared Jon and I have been since Max's transplant surgery. After the CV ICU already had one cardiac arrest, we were terrified Max would be next. I felt so helpless as he lay in his bed, crying and gripping on to my finger with a look of pain and fear in his eyes and I couldn't do anything but stand there and hold his tiny hand.

An emergency EKG determined that the cause of the sudden leap in heart rate to be the result of a supraventricular tachycardia, or SVT. An SVT is essentially an electrical impulse that's sent to the heart but rather than the impulse going down the whole side of the heart, it gets stuck in one chamber and essentially keeps cycling around and around the one chamber. Max has pacing wires hooked up to his heart from his transplant surgery and the doctors got a machine that they hooked up to Max's heart and gave him a mini-jolt, basically doing a hard reset of his heart. His heart rate went up to 250 bpm before dropping back to the 180 bpm it had been sitting at for most of the day.

Max was fine, crisis thankfully averted.

The doctor told us that this can happen and this particular organ has a little bit of history with SVT. We knew that right before the surgeon took it out of the donor, the heart had had a 6 beat run of SVT before stopping on its own and it did it again for about 8 beats when they restarted the heart after transplanting it into Max. The doctor also said that this isn't something we need to worry about. Yes, it's scary to watch his heart rate skyrocket in an instant, but if it happens again it's something that can easily be fixed with medication. There's also going to be an adjustment period as Max's body gets used to the new heart and the new heart gets used to Max.

At this point, the doctors are all more concerned with Max's lungs than his heart's terrifying 25-minute run of SVT because he responded immediately to treatment. They all really want to avoid having to re-intubate him and luckily his x-ray this afternoon showed an improvement in his lungs. We're hoping that with his breathing treatments, he'll hopefully continue to improve. He is already getting more vocal and he's coughing more on his own, both of which are great signs that his lungs are getting stronger.

Another positive improvement is with his neck. As Jon mentioned in the last post, the left side of Max's neck was swollen due to a blood clot but thanks to the blood thinners, the swelling has already drastically reduced.

I put out a request for prayers and good thoughts on Facebook earlier and I really want to thank everyone who took a minute to think of Max. Today was really scary for us and it helped to know that we had so many people out there rooting for him.

I know I've been asking for a lot today but if you could, I wanted to ask for prayers for the other patient in the CV ICU that went into cardiac arrest and needed emergency surgery. It was a baby like Max and the family looked exhausted and terrified. Considering how scared we were with Max's situation, I can only imagine the hell that other family went through today.

Thanks for bearing with us on this long update. All three of us are pretty worn out and we're all going to try and get some rest tonight. Thank you again for all the prayers and nice thoughts, they're very encouraging on days like today.

Friday, February 14, 2014

Never a Dull Moment

Things are always exciting with the Bannon family. Today was an especially busy day not only because of the speeches, interviews, and television crews, but Max had quite a lot going on as well, which frankly is our new normal.

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.

MUCH better.

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.

Thursday, February 13, 2014

Post-Breathing Tube and Public Speaking

Max had a little bit of a rough night but he's been doing well today. As a result of having the breathing tube, his lungs have been secreting a lot of fluid which is not uncommon. However, his lungs aren't very strong (he's never had to use them since he was intubated at birth) so he's unable to really cough and get the gunk out on his own yet. The stress of all that made his blood pressure skyrocket last night which was scary for us but they got everything under control with a breathing treatment and suction and he didn't have to be re-intubated last night.

They've cleared his lungs a couple times and his airways alternate between having good flow and not so good flow. But he's being monitored closely and the respiratory therapists are continually checking in on him. It's going to be a gradual process to get his lungs where we want them to be because they're set so far back as a result of being intubated from birth.

[EDIT]: It turns out that Max's lung issues last night were, according to the x-ray tech, that he had so much gunk in his left lung that it nearly collapsed. We were really fortunate that the doctors and respiratory techs caught it in time and were able to clear it out. He just had another breathing treatment and his x-ray today showed that his lung looks exponentially better.

This is another one of those blessings in a bad situation. Max was diagnosed mid-pregnancy with HLHS but we had enough time to move down here and get him set up for transplant. Last night was terrifying because Max was having a hard time breathing with really high blood pressure but they caught it in time before his lung collapsed. Very scary, but we're feeling very thankful, especially because his lung function is improving so much. 

They also just removed the bandage from his chest closure and the incision is a little redder than we would all like. The attending on duty is just got ahold of the surgeons because Max's antibiotics were stopped this morning. He came in and said he didn't know why the antibiotics were stopped and to definitely start them again. Now we're all just keeping our fingers crossed that the antibiotics help with the redness and he doesn't get an infection.

On the plus side, today they were able to start feeding him through a tube that goes in his nose and down to his stomach. which is great.

Sometimes, it's the small victories that get you through the day.

Tomorrow there's some sort of Valentine's Day party for the heart patients and their families. We'd heard about it a couple days ago when someone from the hospital stopped by to get our permission to have our surgeon talk about him at the event and to get permission to contact the Arizona Republic about Max's story since he is the youngest heart transplant patient at Phoenix Children's Hospital (the youngest patient previous to Max was seven months old). Then when we saw one of our transplant team coordinators this morning, she informed us that apparently we're speaking tomorrow.

She just wants us to talk a little bit about our journey with Max from when we found out his diagnosis to getting to where we are now. It shouldn't be too bad, it's a story I've certainly told a lot so I should be fine. I mean, come on, if Max can make it through a heart transplant then I should be able to suck it up and do some public speaking for him.

Maybe public speaking isn't that bad.

Sometimes, All You Can Do is Laugh

So as many of you know, Max has been through a lot over the last 10 days. He has had over 100 "procedures" to be exact. He was born, immediately intubated, taken from his mother, poked, prodded, suctioned through his nose, transferred between hospitals, cut open, had enough blood drawn to nearly require a transfusion, scanned a multitude of times, nearly had his kidneys fail, had multiple catheters placed all throughout his body, had his core temperature lowered to 16 degrees, and had his heart removed in favor of a better model. But throughout all of this, Max has been strong; proving beyond a doubt that he deserves his "Mighty" title.

Pictured: Max's new heart. He may have grown a bit since you last saw him.

However, there is one thing on this earth that Max completely despises. Something so foul that the mere sight of it has the power to wake him a morphine-induced coma with the strength of a thousand babies allowing him to immediately free his hand and push off his weighted blanket.

The resemblance is uncanny.

At this point, you may be asking yourself: "what in the world could be happening to this poor child that is more traumatizing than a heart transplant? Why would his loving parents let anything so horrible happen to him?"

Well, the answer to those questions is relatively simple: Q-tips.

Yes. Those Q-tips.

One would think that the sight of a yellow procedural mask or a suctioning tube would elicit such a response, but no, Max is perfectly fine with almost all of those things. In fact, he is generally so cooperative for everything that when the majority of the nurses and physicians think he is still sedated, he generally isn't. That is until the Q-tips come out. As these tools of destruction come near, Max's sixth sense kicks in, the adrenaline starts pumping, and he is on full alert.

Q-tip inbound, 12 0'clock. Battle Stations ready. 

We knew he was a fighter, but I don't know if anyone was quite prepared the Hulk lurking within. He likes to distract the Q-tip-wielding nurses by locking eyes, piercing into their souls, and then trying to punch them with his battering ram of an arm.

We feel bad for the little guy that such a benign thing is so absolutely terrifying for him, but it is slightly humorous that of all the things to be truly terrified of, we never would have expected the Q-tip to top the list. We joke with the nurses that in in distant future Max will go to use a Q-tip and have some sort of Vietnam-esque flashback causing an overwhelming outburst of hatred for the tiny cotton tools.

This is a pretty accurate interpretation of an angry Might Max.

 If you can't find times to laugh within the situation, it gets much too depressing to handle. Even though it is heartbreaking to see him awaken at the mere mention of swabbing his nose, it is nice to see that he is fighting so well and that his survival instincts are very strong. We have had a few bumps over the last 24 hours and unexpected hiccups--sometimes literally--but Max is being watched closely and alterations in his care are constantly being made.

Throughout everything so far, he is doing better than expected overall, so that is a definite plus and what we choose to focus on.

His mercy is the only thing keeping him from breaking my finger.