TRIP TO CHILDREN'S

Today Max had appointments with the Craniofacial team at Children's. They had not seen Max since his discharge and were very excited with how great he looks!

This was the initial team that followed Max upon his first graduation from the NICU when he was two months old. That was a very scary time for us. While we were excited that he was doing better, he was right on the borderline on where he should be (ICU versus the floor)...and then came the issue of the trach. Max was having severe "failure to thrive" and the conditions of "congestive heart failure" and "chronic lung disease" were daily discussions. Yuck. Always hated those terms but that was our reality for the mighty lil' man.

Additionally this was the period of time when Max was having his major "twit spells" when he would cry for hours upon hours upon hours...and literally NOTHING would calm him down. Each time he nearly ended up in the ICU because his weak fragile body couldn't handle that stress...his heart and respiratory rate would skyrocket and everyone would be completely freaked. Just writing this brings back some very painful memories...it was so horribly sad to watch him in so much discomfort. (Later these episodes were diagnosed as "twit spells," which are common with babies with major pulmonary issues and Ativan became Max's new best friend.)

Anyway that team helped us through many, many difficult days/weeks/months...whether they were treating Maxwell with extra TLC or taking the time to discuss the big and small issues in detail with his very worried mommy (who was dealing with absolutely no sleep but still trying to make major decisions). And when I was angry/upset occasionally on some difficult and confusing matters, they were always quick to respond. (I think I often won the record for the most questions asked during morning rounds! Oh well!)

We were at clinic to check up on some of his craniofacial issues...primarily his facial palsy, recessed jaw and choanal atresia. I am particularly worried about the jaw and wanted to know how soon we would know if he will require surgery. The answer for now is "wait and see." So that's that for now.

The clinics were apparently very backed up today so we had quite a long wait...but as you can see from the photos, Max and I like to have fun no matter where we are! And of course we had to fit in some tummy time for his therapy...he was not happy with that activity choice! But Max did really enjoy reaching for the doctor's instruments. Every time I would look away he seemed to sense that and would grab and chew on them. I was trying to discourage this but he was very determined!

*On a side note, I have been getting up and down every two seconds while I write this post because Max's monitor is beeping like crazy. He is having constant bradycardia tonight...I think it is because he is so exhausted from his big adventure today! Fortunately his heart rate has self resolved thus far with no intervention.*

So no big news from our appointments today. Hopefully his labs come back ok...it's been a few weeks since the last draw and we want to ensure everything is stable despite his medication changes and recent illness.

It was fun to run into several more doctors and nurses today and learn that they too are reading the blog. (Not sure how they even heard about it!) But how nice is that? Even after his discharge, they are still concerned about sweet lil' Maxwell. Many of them review his updated computer records too just to keep track of his progress. I love how much they all adore him!

I am tempted to go wake up Max because of this heart issue, but he is so peaceful right now. Well looks like I will stay right by his side until the nurse gets here!