Thursday, December 23, 2010

I should know better!

I should know better than to write about how good Max is doing...because after I finished my last post, things went from looking up to going downhill fast.

The Keppra increase made him very jerky and twitchy, which it can, but something we hadn't seen before was this labored breathing and very high heart rate along with it. He was dripping sweat, and would get fevers. By evening, we were giving him his maximum dose of Ativan to just knock him out and try to stop the jerking around.

It worked immediately, but the respirations and heart rate stayed elevated. And while we started feeding him little bits, he continued through the night with high respirations.

It was Steve's night to stay home with Abbey, so I was gearing up to stay up all night watching Max since he was acting so differently with the breathing. When in walked one of our favorite nurses. Not only is she a great nurse, but I felt a special connection the other day when she came by. She was also one of sweet Samantha's nurses, and I knew how well she took care of her also. So, when she came in and remembered Max right away, I got this feeling that Samantha is still around here, looking out for her buddies, making sure they get all the best care she got. And it made me feel so much at ease.

And she did take great care of Max and us. When his lab results came back with elevated infection markers, they started him on 2 antibiotics, but as the night and day progressed, he became more labored with breathing, and just looked more sick.

Pretty soon, we had a plan to stop his feedings, and to start running cultures and more tests, as well as continuing on with the antibiotics. By afternoon, we were back down for a CT scan to see if there was another blockage, or abscess where he had surgery. And, by evening we had met with infectious disease who had added on two more antibiotics, and an antifungal to cover everything that might be going on.

We got the diagnosis of peritonitis, which is an inflammation (irritation) of the peritoneum, the tissue that lines the wall of the abdomen and covers the abdominal organs. It can't be spcifically diagnosed from the CT scan, but there was enough evidence from the images that they were able to call it that. So, by last night, he was on 5 medicines through his IV, and resting well.

His respirations and heart rate have come down dramatically, and he slept through the night. All of his cultures are still negative, and he'll continue on the medicines for at least another day. Then the tricky job of deciding which ones to keep him on...for the next few weeks!!!! IV antibiotics for about 3 weeks. I just blinked and looked a little dumbfounded when the doctor told us that this morning! But, there are a lot of nasty things in the gut, and they are treating as if his gut has perforated to make sure he doesn't get the bacteria in his system.

We'll start feeding him tomorrow, on continuous feedings to give his gut and intestines time to process it. And we will definitely be seeing Santa at the Children's Hospital this year. Abbey's a little bummed about that, but she's just happy to be here with all of us. She and I are going to go to a movie this afternoon, which will be a nice break.

Now for a couple of videos. The first one is of how hard he was breathing yesterday. His saturation levels were always in the 90% range for oxygen, he was just having more pressure on his diaphragm and lungs with the inflammation that it was making it hard for him to breathe.

This one is today, just 24 hours after the antibiotics. He's waking about every hour and smiling and talking to us. He's still very tired, but he is just one week post-op, and been fighting a pretty wicked infection. But, I melt a thousand times over every time this boy laughs. Especially after these past 11 days.


Junior said...

oh Max I am so sorry you had a tough time but glad you are feeling better today. Love your big smile.
Lots of Christmas hugs and prayers for a speedy recovery.

Susan said...

Just look at that wonderful smile!

Elizabeth said...

He is precious--the first video just tugged at my heart--I felt so bad for Max. The second one makes me smile. I'm glad that they have found the cause of his problems. Continue to pray for y'all. hugs,