Monday, May 26, 2014

Neurology Follow Up and the World's Cutest Alarm Clock

We only had to go the hospital once this week but it was kind of a long day. On Wednesday, we had a physical therapy appointment scheduled in the morning but when we arrived at the hospital, I realized that I'd forgotten to bring his most important anti-rejection/immune suppressor medication with us.

I'm lucky if I can remember who my husband is.

Luckily we live near the hospital so we quickly loaded back up in the car and drove home to get it while I called to reschedule our appointment. After getting to deal with the PCH phone tree, I was able to leave a message with the therapy desk and reschedule the appointment for that afternoon. We got Max his medication and headed back to the hospital for a blood draw (Max's favorite!) Luckily they only had to draw one small vial of blood to check his magnesium level as opposed to the four or five vials they need when testing his anti-rejection med levels, blood counts, and God only knows what else.

We were prepared to wait for the IV team but once again, they showed up in a matter of minutes after we arrived. Someone had clearly received a talking to about our routinely long wait times because this is the second time in a row when the IV team has shown up almost immediately. It actually took longer for the lab draw station to get the order from the heart center than it did for the IV team to show up. This, of course, seemed ridiculous because the draw station and the heart center are on the same floor. The orders need to be faxed in but it'd be so much faster to just walk over and pick them up.


The draw went well and we were able to head home for a couple hours before returning for Max's physical therapy appointment.

Physical therapy also went really well. Max's left shoulder is still good and none of the stiffness has returned. Now we're all focused on Max's head--he does really well with lifting it up when he's leaning his head back but he needs to work on lifting it forward. He'll get there and no one seems particularly concerned yet, especially because Max has a big head.

Our baby is a bobble head.

We found out this week that it's in the 75th percentile . . . which isn't really surprising considering that Jon and I both have big heads.

It's facts like this that make me glad I had a C-section.

Sorry for the visual.
Here's a puppy.

The big appointment for the day was the neurology appointment which was a follow up to the head ultrasounds Max received while he was in the hospital. He had a small cyst on his brain and initially, we heard about this not from the neurologists but instead from a random resident during rounds who, while presenting Max's case, mentioned casually that he had a cyst.

"He has a WHAT?!"

We've been really anxious about this appointment because with everything else Max has been through, we really needed for his brain to be okay.

As it turns out, we didn't need to worry. The neurologist said he looks fantastic and the kind of cyst he had was very small and was in his spinal fluid which the body apparently cycles out and replenishes. Max's first head ultrasound took place the day after he was born in order to get him approved for the transplant list and the cyst was present but small. He had two more ultrasounds after that, the last one on February 18th, and it had already shrunk down to only about 1-2mm in size. The neurologist we saw was so unconcerned with it that she didn't bother to order a head ultrasound during our appointment. When she examined Max, she said that neurologically he looked perfect and we'd just keep an eye on his development.

We might do a head ultrasound when Max goes in for his six month biopsy and heart catheter in August but otherwise, the doctor thinks Max is fine. She said that these kinds of cysts are super common and often just go away on their own. As with Max's baby anemia, the cysts are not unusual but they're not often noticed because most babies don't need a head ultrasound right after they're born for transplant list approval.

Some of this "normal" shit starts out being as scary as entering symptoms into WebMD.
"Let's see . . . runny nose, coughing . . . yep, it's cancer."

Everything looks great on Max at the moment which means that we don't have ANY appointments this week! I mean, I still have to go to the hospital pharmacy to pick up prescription refills but still. It's kind of a big deal that we don't have any appointments because this is the first week since Max was discharged from the hospital that he hasn't had to see any doctors.

"But, Emily," you might say, "if you haven't had to go to the hospital then why are you updating the blog almost a week later?"

I'm so freaking tired I feel like my eyes are bleeding.

Max and I had some issues with establishing breastfeeding and for a while, I thought that it was never going to happen. If I wanted him to have breast milk, I was going to have to pump and give it to him through a bottle. However, almost two weeks ago Max all of a sudden decided that he was super on board with nursing and that was what he wanted to do. Which was amazing!

Until I realized I couldn't pawn any of the middle of the night feedings off on Jon.

But it's a sacrifice I'm willing to make. I'm exhausted and can't see straight (the fact that I'm using a computer is incredible) but I know that these middle of the night feedings are temporary. I don't know how long they'll last but I'm assuming they'll stop before he goes to college.

In the meantime . . .

Even when I'm feeling too exhausted to move, I just look at this face and it makes me forget that I'm running on 20 minutes of sleep in the last 48 hours:

Wednesday, May 14, 2014

The Mighty Saga Continues

Max had his bi-monthly clinic visit on Monday where he had his usual set of labs, an echocardiogram, and a visit with his favorite transplant coordinator. Once again, we had to wait for hours for the IV team to draw Max's labs, but our doctors have had enough of this nonsense and are trying to find a solution to this problem, especially since the draw itself takes all of two minutes. Other than the inconvenience of waiting--and one would think at this point that we would be accustomed to this consistent proverbial hold, but alas it is continually draining--everything looked great! Max's heart is strongly pumping away, he is gaining weight (OVER 10 POUNDS!), and the biggest news of all, we have been upgraded to a monthly clinic visit.

This is huge news, but since he is over three months post-transplant and doing wonderfully, this is to be expected. We will still go in for weekly labs along with therapy appointments, pediatrician visits, and a follow-up next week with neurology regarding some concerns they had while Max was inpatient. Max's blood counts are continually low, albeit consistent. Since there have been relatively few changes to these levels throughout the last three weeks, it seems that his natural infant physiology coupled with immunosuppression are the culprits here rather than some acute attack or the side-effect of one of his other medications. Hopefully, over the next few months, those levels will begin to slowly rise and give us a little peace of mind. Until then, we remain vigilant and on pseudo house arrest for the foreseeable future.

Pictured: Reality. 

Since Max is doing so well and his last biopsy yielded incredible results, we are able to skip over the tentative three-month biopsy and go straight to the six-month. For many transplant patients, the team likes to go in every three months to check for early signs of rejection and to get an up close look at heart function. However, since Max's case is a bit different than others, we are able to change things up a bit. This means that hopefully Max will not have to have another surgical procedure until early August when he goes in for his next heart catheter. This is such a huge relief and will give the little man a lot of time before he has to have another inpatient procedure. If everything looks good in August, he likely will not have another biopsy until he is around a year old. Awesome.

Max continues to make huge gains and advances each week. Despite everything his has gone through, he is ahead of the curve for the majority of his physical milestones and you can almost watch him grow and age with each day. His progress in mind-blowing and we literally could not have hoped for better circumstances with all things considered. He is such an impressive human being and the fact that he has remained such a happy and easy-going baby speaks wonders to his strength and spirit. Honestly, we couldn't be luckier.

Max's new favorite toy is the wrapper that encases his medicinal oral swabs. It is a nice crinkly plastic, so it does make some pretty great noises. Move over expensive toys and hello, plastic wrap!

In other news, a few people have asked us exactly how much Max's stint in the hospital actually cost. Even though this is a question that is somewhat personal in nature, we don't mind giving a bit of insight into a situation that most have no experience with. We generally just gave a ballpark figure because there was really no way to justifiably answer this million-dollar question, but we can give a hint in the form of an insurance statement/bill. The image below is what 24 days in the CVICU will cost in terms of rent (this is just for his stay in the hospital, and nothing more):

To be fair, everyone warned us that kids were expensive...

Like we said, this was only for his stay post-transplant through discharge. Apparently, it is pretty pricey to be a miracle baby.

Until next time.

Saturday, May 10, 2014

Three Months Post-Transplant!

The theme for the first part of our week was "waiting." On Monday morning, we went in to have Max's blood drawn so his doctors could check the levels of his anti-rejection/immune suppressor meds, his blood counts, his magnesium levels, and a few other things. We arrived in the morning as instructed and then we waited . . . and waited . . . and waited . . .

Max aged a bit while waiting.

We have to wait for the IV team since Max's best vein for blood draws is on his scalp and we're not sure what happened. We think that maybe there was an emergency in house but after three hours of waiting, I walked over to the heart clinic to talk to our transplant coordinator. She told us that it was now too late to get the medication level and we'd have to try again the next day. She was definitely NOT happy that the IV team kept us waiting for so long with no word--they even stopped taking calls because we had the lab draw station and the heart clinic both page them to try and get an ETA.

On the plus side, since we had to wait for so long, we ended up seeing almost all of Max's transplant team as they passed by. We were particularly glad to see Max's surgeon since we hadn't seen him in about a month. It was great to see him and he couldn't believe how big Max is getting and how good he looks.

We went back to the hospital and Tuesday and started to wait for the IV team again. We figured it would be at least an hour before we saw anyone but we were in and out of the hospital in 20 minutes. I have a feeling that someone gave the IV team a talking to . . . or we just got lucky and got them during a slow time.

It was probably the other one.
Wednesday was a day off from the hospital and then we were back in on Thursday for a physical therapy appointment. Max is doing so well--and his left shoulder isn't tight anymore! He and I have been working a lot to try and loosen it so Jon and I were thrilled when the therapist told us that she couldn't feel a difference between the left and the right shoulders. Max continued to impress the therapist with his head-holding-up skills and overall she said he looks fantastic.

Just before our PT appointment, we ran into some familiar faces. If you've been following the blog for a bit, some of you might remember back in February when Max had his scary run of SVT. The baby a couple doors down was also having a rough day and we asked everyone to keep that baby, Rylee, and her family in your thoughts. We ran into them today and she is doing great! She looks wonderful and it was really nice to see her and her mom.

There's a kind of solidarity among families in the CV ICU or the NICU. It's a club you never wanted to join but the support you can receive from each other is really helpful. Especially when they can help you to have a sense of humor about everything that's going on by sharing this on Facebook:

Oh my god, my life.
Especially the last panel.

Max's blood counts are the same so we're still hanging out at home. Between Max's adorable face and yoga, we're managing to stave off cabin fever.

But now I have new problems.

Tomorrow is Mother's Day and I'm so happy to be able to celebrate at home with Jon and Max. Yeah, we're under house arrest, but I'm so thankful that we have Max here and he's home with us.

Max is now three months post-transplant which is amazing! That was our next big milestone and because he's made it this far, he's now much more likely to make it to six months post-transplant. He's continuing to exceed expectations and I couldn't be prouder to be his mom.

Friday, May 2, 2014

No News is Good News...Well, Sort of

It has already been another week in the life and times of Mighty Max. 

The Medical Side:

Max had his bi-monthly clinic visit on Monday for his regular check-in, blood draw, EKG, and echocardiogram. He has become so familiar with the routine that even the blood draws don't upset him too much anymore. The IV nurses still have to draw from the major vein that runs across his head--because it has a really nice flow-- but Max seemingly couldn't care less. He doesn't like the initial poke, but he usually only cries for a bit, if at all. He hates being held down more than he hates being poked. His inherent toughness and lack of crying often makes the draws last longer because his calm demeanor means that his blood pumps a bit slower, but he seems to tolerate it nonetheless. 

After his blood tests this week, we found that his counts remain low and stagnant. His white count has been hovering around 2,300 cells per microliter (mcL) while the typical baby his age has a count anywhere between 4,500-10,000/mcL. While this number is much lower than desired, Max is asymptomatic and otherwise healthy. However, this means that we still have to take extra precautions and continue to get weekly blood draws to closely monitor the situation. Since his counts remain unchanged after stopping a few medicines that may have been contributing to the situation, we were able to rule some of them out and start them up again. One of them is a strong anti-viral, so that is a crucial piece to his preventative medication shield to get going again.

We remain hopeful that these levels are the combined result of everything he has gone through plus the natural infant physiology rather than something a little more serious. Baby anemia is actually pretty common around this age, it's just not often noticed or monitored as most kids aren't getting weekly blood draws. At this point, all we can do is continue to closely monitor Max, keep his exposure to an absolute minimum, and cross our fingers.

Hopefully, Max's cells don't fall for the hot chocolate trick. 

On the plus side. Max is almost 10 pounds, which means that he is almost four whole pounds up from his post-surgery weight; this is incredible despite everything else he has been forced to deal with. Additionally, his weight gain put him into the 5th percentile for infants his age--YAY! he is actually in a percentile now!--meaning that we could ease up on his three-hour feed schedule and let him call the shots a little more. For the first time since Max was born, we didn't have to wake him up at night for food or medicine, it was absolutely surreal (now he woke up himself like three times, but it was awesome). This tiny bit of freedom feels huge and allows us to do things a little more on our own schedule rather than simply following a strict feeding guideline. It gives Max a bit more autonomy and will help him develop some more normalized feeding habits, which he was already started to formulate since Monday. 

Later in the week, we had another appointment with the speech pathologist to follow up with Max's feeding abilities and habits. She wasn't surprised to hear how well Max is doing, but she was surprised at how much he is sometimes able to eat in one sitting. Like the rockstar he is, Max demonstrated his awesome skills on cue to show that he has had little to no delay when it comes to oral feeding; which given the statistics of heart kids and those started on NG tubes, this is almost unbelievable. We really like the speech therapist, but unless Max has any issues, this was our last appointment with her. 

Home Life:
Since Max's blood counts are still low, we remain on variable house arrest for the time being. The plus side is that we get to spend nearly every waking moment with the boy; and neither of us would exchange any of these little moments for the world. This is the best part of this situation and it has been incredible to watch him grow, learn, and play.

Unfortunately, we don't get to share those moments with anyone outside of digital communication and specific hospital staff. There are days where we really want to take Max out and show him off to the world, but that is continually on indefinite hiatus. It has been hard to be away from so many of our friends and family for what feels like so long, and it has only been four months since we moved down here. At the same time, time is flying and Max turns three months old tomorrow!

The Fun Stuff:
We can't believe that Max was born three months ago! After next week, he will officially be three months post-transplant as well, which represents the next major milestone on his road to surgical recovery. We are still trudging through those woods, but we are getting into thinner parts each day. Max has been very vocal this week and making all kinds of new noises including being on the verge of laughing for days. He has been experimenting with what to do when he is happy, which includes a lot of kicking, flapping, and shaking his hips. He has also been bringing his hands to his mouth a lot and beginning to self-soothe. This is a big jump in his development especially since his left shoulder has been stiff since surgery with limited upwards rotation. Plus, he was not permitted to self-soothe while in the hospital due to the physical constraints of his healing heart transplant.

Max has had a lot to say to us this week; after all, he has important business to convey.

Also, Max absolutely loves his activity mat. In the past, he wasn't always too keen about being on the floor but he suddenly really loves the mobile and its attached toys; it has been a really fun week with Mr. Max.