First of all, we are totally & completely overwhelmed by the response we received this week after the news about Griffin. I wish we were able to respond to every message, text and post of encouragement you all have sent, but our time is better spent loving on our sweet boys so please know that we have read each one and are so very touched. If you have asked a question, I promise we will do our best to respond.
We had a 'care conference' with Logan's doctors yesterday to evaluate where we stand now that we are on day 30 of this hospital stay, and to develop a game plan to get where we want to be. It feels good to know everyone is on the same page and is working toward a common goal. We are so thankful for our team of doctors taking time to sit down with us and talk through every detail.
The surgeon feels like his g-tube site is looking much better, so they began feeding him through it yesterday evening. They started with a very small amount, and he has tolerated it well so they increased the rate this morning.
Neurologically, they feel he is stable enough on his seizure medications to attempt to wean him off of sedation. They are planning to do this slowly over several days and are giving him Methodone and Adivan to curb any withdrawal he may have. He does still have persistent twitching in his face as well as his left neck and shoulder at times, but complete seizure control is not the goal at this point. We want them controlled enough so they don't spiral out of control, but don't want to have to continue to rely on operating room drugs to do it.
From a respiratory standpoint, the goal is to get him off of the ventilator. Once he is on lower doses of sedatives, we should be able to see what his true respiratory status is. They are lowering the vent settings slowly as they lower the sedation, and the idea is that he will need less support as his body wakes up more. If all goes well, he could be ready for extubation as soon as early next week. They have a plan in place to go immediately to a bi-pap machine as soon as they extubate to give him the support he needs.
Specifically, our prayers are these:
- He will tolerate weaning off the sedation meds with little to no side effects and no increase in seizure activity.
- His digestive system will kick in and move his formula through just like it should.
- His lungs will be strong, his airway will be open and he will be able to take deep, consistent breaths without the help of the ventilator.
- Most of all, we pray that our baby will be peaceful, comfortable and pain free.
Bless you all for praying with us!