NOT A GOOD WEEKEND

What a weekend. It has certainly been a roller coaster. Max was successfully "somewhat" extabated on Friday afternoon. At first, he didn't want to breathe, which of course was not fun to watch, but he snapped to it soon enough. Soon after extabation, he was not doing very well. He was working very hard to breathe and his blood gases were not looking good. His heart rate and blood pressure were rising (good indication of pain after surgery) so they increased his pain medication.

However, then his heart rate dropped significantly and he was having major bradychardia (low heart rate) and the nurse literally was flicking his head and shaking him to snap him out of it. Again, that wasn't fun to watch either. He remained very out of it until the next day (Saturday). He was off and on mild sedation throughout the day but that night he began to show signs of signifant pain again. Some pain meds seemed to do the trick and in the middle of the night, they transferred him to the floor because he seemed to be more stable...and another child needed the bed in the ICU. We were thinking this was a good sign.

However, today Max took a turn for the worse and they quickly moved him back to the ICU. I had gone home late last night because the hospital was out of sleeping rooms for the parents and I had too much breast milk in the fridge. I was planning to head back to the hospital late morning, but then I get a call from the doctors basically saying, "you should get here soon. Max isn't doing well."

His heart rate, temperature, blood pressure, respiratory rate and blood gases were all going crazy....and everyone was very concerned what was going on. They were thinking they would need to reintubate him, but just in time...he seemed to chill out just enough. By the time I arrived back from Bellingham (we live about 1 1/2 hours away from Seattle), Max was already doing much better than just a few hours before. Then for the next two hours he sucked on his binky like a sucking champ. But he definitely was still not himself...moaning and moving around in pain and exhaustion and very warm with his fever (a solid 105 for too long...but finally went down after 5 hours), yet sucking away like everything was fine. Everyone is very confused and quite concerned. They said he looked absolutely awful this morning.

Tonight he is still acting like he is pain, and they think there is a possible infection. On top of everything else, I imagine he is quite hungry. He has been off of his feeds now for four days. We are hoping we get the green light for feeds tomorrow.

I have no idea what tonight or the next few days hold for Maxwell. Please continue to keep him in your thoughts and prayers.

Speaking of prayers, we did have quite an incredibly intense experience yesterday. I was pretty distraught, as you can imagine, and sitting in Max's room very worried. The mom of Max's next door hospital neighbor, a 6 year old with terminal cancer (we are all praying for a miracle for little Timmy), asked if it was ok if a group of people, who were visiting Timmy, came in to pray for Max. Wow, what an experience....can't even begin to describe. There were four young men and women (late teens, early twenties) and they were not your "stereotypical" church going group...which made it all the more amazing. Quite honestly, they looked like they should have been on a video on BET or MTV...not in the hospital quoting scripture and praying for Maxwell. They were INCREDIBLE. They were there for at least 30 or 45 minutes...each of them passionately (and I mean PASSIONATELY) praying for Max and praising his spirit and our love and faith in the Lord. I extend my deepest thanks to Leah for making that happen. One of the men said they just felt drawn to pray for Max...and I am so glad they did. Their enormous faith gave me strength and renewed hope.

Again, please keep Max in your prayers and I hope to offer you a positive post tomorrow. Off to love on my lil' guy a little more...