TOUGH WEEK FOR LIL' MAX

The past few days have been quite tough on lil' Max. On Monday, he started to spike a fever, breathing much faster and became very congested with major coughing episodes. The fever subsided after Tuesday, but the other symptoms worsened. He was tested for RSV on Friday, and thankfully, it was negative.

Fortunately he has the strength for a good and effective cough, but his narrowed airways and lung issues cannot withstand much congestion. He has been so congested that often he will vomit after a major coughing spell. Not a problem for a healthy kiddo, but we are not sure yet of Max's swallowing capability. (Remember, he is fed only through his Gtube directly into his stomach.) Most CHARGErs have swallowing issues...and that is worsened when you breathe as fast as Maxwell does. So when he vomits or expels anything, you have to act fast and remove everything from this mouth before he attempts to swallow and aspirates into his lungs.

What is funny though about the spit up is how excited I was when he did it the first time. I was cleaning him up and then changing my shirt when I realized, wow, that's a first! That might sound odd to a parent of a healthy child, but see with Max having the Nissen (surgery to prevent reflux - part of stomach is wrapped around the esophagus), vomiting is not a natural occurence. So I had never had Max spit up on my shoulder before...I was pretty emotional about it! :) I know other CHARGE parents know exactly what I am talking about!!!

Unfortunately, his congestion has caused his oxygen needs to triple this week, which is not great...but he hasn't surpassed the "danger" limit. He is needing to be suctioned quite frequently, which both of us absolutely despise, but his nose is so small that it has to remain as open as possible.

So despite all of this, Mighty Max is still holding his own. Quite a trooper he is! This week I have been talking with the doctors nearly every day to provide updates and change any medications and so far, once again Max has avoided another stay in the hospital! We are hoping the addition of a steroid treatment will help his lungs recover more quickly.

We have a follow up with his PCP tomorrow, and then on Tuesday we head to Children's for an appointment with surgery regarding his Gtube. Max is finally ready for the big boy version, which is great. Supposedly they are easier to maintain and deal with...I know the current one is about to be pulled out any day by our mighty man. He keeps tugging at it!

Tonight should be interesting and hopefully fairly calm. We don't have a nurse, so I will be keeping busy to stay awake. Good time to catch up on my blog entries, laundry, scrapbooking, etc. We have a nurse almost every night, so it's not too bad to have the occasional all nighter. Can't complain! The nurses have been a big help...and I am keeping my fingers crossed that insurance doesn't cancel that any time soon!

That's all for now...time to post some photos!