9/1 Update

Patrick had a pretty good weekend.  They lowered his IV morphine each day and finally took him off the IV and switched to oral morphine to complete the weaning and, so far, he's been doing great.  They were also able to get him up to full volume feeds, so the next task will be compressing them over shorter periods of time. His weight this morning was 8.19kg, which is great considering how long he was without food this past week. He's been happier each day, with today being the best he's looked in a long time, filled with lots of giggles and smiles.

Chop, chomp, chomp! (pic)

The biggest problem is that he keeps spiking fevers--at least once a day, although today was twice. Tylenol and Motrin manage to knock them down, but once the nurses stop giving it to him, his temp goes back up. They have run tons of cultures and took more blood cultures today, but so far everything has come back negative--which is good--but it doesn't answer the question of what is causing the fever. We are hoping it's just more teething, as his new favorite friend is a cold, wet washcloth. Seeing as one of his top teeth finally popped through today and the other is very close to coming out, I am hopeful that we will receive confirmation of their theory and the fevers will stop soon.

I love pina coladas and gettin' caught in the rain, both of which happened today! (pic)

We've gotten better at self-care over the last few days. I remembered that I wasn't pumping anymore, which meant I could indulge in an adult beverage! Ah, pina coladas, how I have missed thee!  

My sister came to visit one day, and we went to the zoo after visiting Patrick. The next day, Patrick's godparents showed up and spent time with him before taking me out to dinner and then whisking me back home. Good thing too--I managed to catch some type of bacterial infection, but managed to get into an urgent care earlier today to get antibiotics. As fast as it came, the antibiotics began working just as quickly and I already feel MUCH better.  

It's all the rage where I hang out.. (pic)

I headed back to Detroit with one of our dear friends, who is also one of Patrick's overnight caregivers when he's at home.  He was so happy to see her, and she was glad to get Patrick snuggles. I was glad to be back to keep an eye on him, but I wore a mask to visit with him this evening to keep from sharing. Not sure what the plan is, so I'm hoping to make rounds in the morning to hear what the docs have planned. I am guessing it will involve compressing feeds and attempting to wean him off of some of the oxygen, nitric, and milrinone, but we'll see.

In fun news, people have started leaving messages on Patrick's motivational boards--here's what it looked like this evening:

Rest, Recover, Cuddle, Grow, Patrick, Grow (pic)

Sadly, it was another rough night in the PICU for staff and other families. Patrick had a new neighbor to one side, which makes me sad because the person who had been next door had been the subject of "extra care." The new neighbor was seizing a lot, and her family was very sad, shaken, and scared. And, there was a room across the hall that was filled with lots of staff and nurses moving quickly.  The room was still full of people when we left.  If you are of the praying variety please pray for all of these families.  

We are forever grateful for your continued spiritual, emotional, personal, and financial support.  We would have drowned long before now without you, so thank you!  Each and every one of you is a bright light and a blessing.