ANOTHER DAY, ANOTHER DOCTOR'S APPOINTMENT!

It seems like we have been living at the doctor's office these past few weeks. Literally we are there almost every other day! Yikes! Max has a bug and it causing some random complications, which is making him quite irritable and uncomfortable. Still having major painful gas, really constipated, congested and coughing terribly in the morning and now he has developed a rash over this entire back and chest due to the virus. Then two days ago, he started experiencing major bradycardic episodes for hours at a time. They would always self resolve but it always makes me wonder what is going on in that lil' body of his. Then when he wasn't having the heart issue, his O2 sats would drop fairly low...again they would self resolve, but he is requiring more oxygen than he has in the past month. So the doctor definitely thought it would be a good idea to see him...AGAIN. Additionally, with the two CHARGErs passing away this weekend, I (along with many other CHARGE moms) am quite paranoid about the health of my fragile baby.

What is the most frustrating to me is how uncomfortable Max is with this virus. He will wake up and just whimper terribly or right in the middle of playtime, he will suddenly get very sad and start crying. This is just not typical Maxwell behavior.

So the doctor didn't have any big answers, he basically just wanted to check him and out and we are going to give Max a few more days before we get too worried and I am supposed to keep a close eye on his heart and O2 sats.

The biggest disappointment of the visit is that Maxwell has LOST more weight. Not gained...not maintained...but lost!!! WHAT IS GOING ON MIGHTY MAX??? Last visit he had lost four ounces and this visit he lost another six. My heart seriously broke when we weighed him. I asked the nurse to do it again and again...I was certain that the scale was broken. They are definitely concerned with this because we actually just increased his feeds again to a pretty high number for a lil' guy like Maxwell. But apparently he burns through his calories! Maybe it's all the OT/PT work I make him do...or perhaps its the calorie burning "happy dance" he now does for me. :) I'll have to post about that sometime...it's absolutely adorable!!! So of course I do everything I can to encourage him to do the dance over and over and over again!!!

So we are not sure what is going on. The only answer the doctor has is that the virus is causing him to burn a lot of calories to heal his body. We are planning another weigh in early next week and hopefully there is progress.

The good news is that we got the EEG results back and as I predicted...NORMAL. The doctor said that doesn't necessarily rule out seizures, and we can do further tests. However, right now I feel comfortable with those results and Max has been doing less and less of the "twitching."

I am HOPING, HOPING, HOPING that tonight Max maintains his sats and heart rate and that he is fairly comfortable. (I have gotten up literally 30 times while writing this post to check on him because his monitor is going off like crazy...fortunately each time he is bringing the sats right back up.) Mommy needs some sleep BIG TIME! We are going on several nights with little sleep and it starts to wear on you after a while. I think I am done with trying to do this on my own. I am researching different ways to get help during the nights.

However, I am worried about the costs because Max's father is refusing to pay for any medical expenses unless ordered by the court. Our divorce hearing is on June 7th and we should have a lot more answers at that time. (Vic is even refusing to pay his share of the expense to get to/from Max's millions of doctor's appointments locally and in Seattle....which adds up to hundreds of dollars every month and it's coming entirely out of my pocket.) If the judge doesn't rule with me, I'm not sure I can afford to pay for help. But I also cannot afford to get sick (my doctor was amazed that I am still healthy after these past few weeks!) and not be able to take care of Maxwell!!! Yikes!

Hopefully Max fixes this situation himself and feels better soon! But even when he is feeling good, he still has some trouble maintaining his oxygen and he requires medications, constant feeds, position changes, and oximeter probe changes through the night.

So we'll see...tomorrow is another day! :) Even if tonight is difficult, hopefully I will get a Maxwell "happy dance" in the morning and that will make me smile!!! :)

*If Max continues to desat, I won't be going to bed anytime soon so I will post some new photos! He is as gorgeous as ever!!! :)