Friday was a very interesting day of tests and physical exams for Maxwell. Lots of success, good results and just a little confusion here and there! But overall, really great news! :)
We began with a thorough pulmonary review, and yes indeed, Max still has crappy lungs! However, there is potential for a good amount of change. The lung has the ability to "fix" itself because it grows until approximately age 8. So thankfully each year, Max's lungs will be stronger and more resilient. We had a chest xray performed (never fun for Max) but I did absolutely insist that this time he not be put in the torture device (the one for kiddos who can sit up). I don't like being so difficult with the technicians, but getting him to stay in one of those chairs is literally torture for both Max and me! And then half the time, he is crying and moving so much that the xrays are not able to be read.
The lungs look about the same as they did in December. One side was a little worse the other a little better. It's interesting how I am starting to learn how to "read" xrays (with lots of guidance!!!)...never thought that would be a skill I would be excited about! We were doing the xray to determine pneumonia or not, but I also always like to have the pulmonary doc review his lungs for overall health and changes.
I am pretty darn impressed with Max's pulmonary team. :) Along with several of his other prominent specialities, they have formed a great relationship with us and care so deeply about Maxwell.
When we were in the emergency room, his pulmonary doc came to check him out. And immediately upon listening to him, he knew there was a problem. He said "You are right to be concerned. This is not Maxwell. This is far from his baseline." He had not seen Max for a few months and yet he remembered every single thing about him right away. Wow, that kind of care and level of knowledge about my son brings me such peace and comfort. Thank you Children's Hospital!!!
REFLUX / NISSEN STATUS
So the next test was his Upper GI to test for reflux and the ability of his stomach to adequately release contents. They insert barium into the Gtube and then watch it on a monitor. According to this test, he is not showing reflux or stomach dumping issues. This was quite shocking news to all of us because the doctors and I had all assumed that the Nissen was failing. Earlier that morning, the team and I were already talking about when the surgery could be, complications, length of hospital stay, different options, etc. So needless to say, we were pleased but confused!
Then within a few hours of the test, he vomited twice. No gagging or coughing involved...he just started spitting up his formula through his nose and mouth. So strange! His doctor was perplexed too and thinks we will need to have some more tests next week once he is feeling better. There are two more intrusive and accurate tests that can be performed to determine reflux issues.
I was sooooooooooo thrilled to get the good news from the Upper GI. The thought of Max having a major surgery again is certainly quite scary. But at the same time, I just wanted some answers on WHY he is not tolerating his feeds.
So for now, I am instructed to keep him on constant drip feeds until he is 100% feeling well again. Then at that point, I will slowly increase his hourly volume and give him some time off the pump. If we see an increase in vomiting at that point, then we know there is something wrong the stomach or Nissen. So we'll see!
I have no idea how we are going to manage to keep him attached to this tube all the time. The boy is starting to move around like a crazy man! Can't complain, he is making great progress!!! :) He also LOVES his feet now and is constantly pulling off his oximeter probe. And the oxygen cannula? Forget about it! He always is pulling that out of his nose, chewing on it, or getting body parts stuck with it. Next time he wraps himself up in all three tubes, I'll definitely try and grab a photo! Today I have already untangled him at least ten times. Wild man! But you gotta love the new and improved activity level! :)
After a lot of begging and pleading, we were finally able to arrange for the ENT doctor to come and check on Max's nose...and guess what? Both nostrils are open! WOW!!! The one nostril is definitely smaller and more difficult to access. However, the doc's special "tools" enabled him to get a cathether through the previously closed area. We are to keep a close eye on it, but for now...NO SURGERY!!! I was soooooooooooooooooooooooooooooooo relieved and thrilled!!!! I was getting a little nervous he would be coming home with the infamous "straw" in his nose!
Our final test of the day was an echocardiogram to determine the remaining heart issues. We should receive results next week once the cardiology team reviews the test.
* That about sums up Max's day of tests. They said he was definitely still sick and it was up to me if I felt comfortable with his coming home in this condition. Of course, I said yes! He still is on the increased medications and inhalers and hopefully those will do the trick. Most importantly, he continues to be in a great spirits! Happy dances all around! :)