Well, we were successful in our quest to have a weekend focusing on Makayla and Gunner! We went to the Zoo on Saturday. It was hot, but fun! Sunday we wanted to go swimming but it rained, so we bought fireworks instead, set off a few that night and the rest on Monday. Monday afternoon we went fishing and caught lots of fish, then got the kiddie pool out for the kids to play in. We of course saw Max each day, but the weekend wasn't focused on him for a change.
Max is continuing to do better. When I visited him this afternoon he was squirmy and smiley! He was getting back to his normal personality, and it was such a relief to see. He was pulling at his breathing tube, getting angry when they changed his diaper, and following me with his eyes.
The neurologist came by to discuss his plan for the seizure meds. They took him off of the phosphinatoin this weekend, with no signs of seizures. They are going to do a three day wean of the phenobarbitol this week. They will leave him on the Keppra for a month or so, and as long as there is no seizure activity they will wean him off of that.
The immunologist came by as well, they are going to do an immune work-up, however based on previous testing, they don't expect to see an issue.
The nurse practitioner also came by after having talked to neurosurgery. They have been doing head ultrasounds twice a week. The latest one, they believe, shows that the ventricles are getting bigger. They think this will require a shunt, but haven't confirmed this. I, once again, told them that they will need to show me definitive proof that a shunt is the best option. We will, of course, do whatever it takes to get Max healthy, however I'm not inclined to let them put something in his brain on a whim. I'm no neurosurgeon, but his head size has not increased drastically, and his fontanelle is less full than it was three days ago, so I find it hard to believe he has hydrosephaly. We'll see.
The next two weekends will be busy. This coming weekend we will be in Salisbury for Doug's friend's wedding. I can't even think of going a day without seeing Max, so it will be a juggling act, but worth it. Then the following weekend we will be back in Salisbury for the Benefit luncheon Doug's family is throwing for Max. We were originally hoping to bring Max to his benefit, but it wasn't meant to be. As usual, we are keeping strong in our faith and continue to pray for the healing power of God. Thank you all for your support
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