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.




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