I'm back!
--Aerosmith, "Back in the Saddle"
So after abandoning Jay and Jen for a couple days while I recuperated at the Sheraton, I'm back and feeling better. Not 100% yet, but much better than a few days ago. Sorry for the lack of updates, but I had no computer access and Jen was just too busy.
One good thing about me being gone for a couple days is that I can tell how much Jay has changed in those few days. When we're here with him all the time, it is hard to see how different he is each day. The changes are just so small and incremental--kinda like watching your kids grow up.
So what's different? His voice is getting stronger (still a hoarse whisper, but now a louder one), and he is using more sentences. He would still prefer to grunt and point, but if we ask him what he wants, now he is more willing to us. His hand-eye coordination is improving as is his upper body strength. The shakiness that he had over the weekend is also gone, but it may come back as they further decrease his morphine and Valium. The occupational therapist placed toys around on the floor and made him lean from a sitting position to get them, and he was able to do it without falling over, so his balance is getting better too.
One the digestive front, he still has a big, gassy belly. They are now going to turn off his NG tube feedings during the day to let him eat on his own. Today we had bacon, tater tots, strawberries, peaches, yogurt, and applesauce for breakfast. Gotta love a cardiologist that lets you have bacon and tater tots! Unfortunately, the bacon was a bit too much to chew, but the rest went really well. So, he's off pureed foods and now on to soft foods. Pasta and mac and cheese here we come! Liquids were still challenging, so he is going to get thickened water and juice to drink for a few more days.
On the cardiology side, he is continuing to improve as well. He did have a brief period of arrhythmia on Monday night, but hasn't had any since. So after a brief pause, they are continuing to decrease his amioderone. They're still working on the appropriate coumadin dose, so for now he is still getting an infusion of heparin, which means he's keeping his PICC line. The biggest change today has been that he is now off oxygen, and so far so good.
Overall, slow steady progress, but no discharge date on the horizon yet. It is both hard to believe we have been here 3 weeks already, but also it seems like we've been here forever. Hopefully we'll back in Raleigh before too much longer, and can get back to some semblance of normal. Thank you for all your thoughts and prayers for Jay (and me).
11 comments:
Great to have you back in the (blazing) saddle again, Derek. Your observation about incremental change is spot on - you don't see what is in front of your eyes when you are staring constantly at the miracle that is Jay's progress. I know there are people who will be so glad at the update, and not a single one who doesn't understand why posting becomes secondary!
With continuing gratitude for you and the love and strength you bring to this family -
Gabby
Thanks fo the update, Derek. Glad you're better and glad Jay is making progress. You all take care of each other. You all and your extended family remain in my thoughts and prayers.
Love you,
Annie
Derek, so glad you are feeling better and huge praise for all of Jay's good news! Continuing to be so thankful for all of that and prayerful that it continues!
Love to all,
Blair
Derek,
We are so glad you are feeling better. Every time Bob goes on a business trip he is amazed by how much the children have changed when he gets back. So we can only imagine how amazing it is under these circumstances. We pray that everything smoothly from now on. You are due smooth.
Dee
Glad you are feeling better, Derek. So happy to hear of Jay's progress and I hope he gets relief from his gaseous little belly soon. Hope they can regulate the coags soon, too. How wonderful that he is off the O2. He is doing good. We are continuing to pray for him and you all.
Love,
Aunt Ali
So glad to hear from you -- and glad you, Derek, are feeling better.
Love to read that good news about Jay's progress and look forward to your homecoming, whenever that might be.
Lynn
Yay! Glad you are doing better and nice to hear about Jay's progress. Now go hug on that baby for me... both of them!
Love,
JBx2
It's amazing what a few days away from the hospital will do for your clarity!! So happy our little buddy is making small improvements every day and it sounds like you have made big ones!! Both of you boys keep up the good work!! Love, AJ
So glad to hear that Jay is progressing and you are feeling better too. Nothing like your body forcing you to rest! To be in step-down must be like a breath of fresh air after all you have been through. Prayers are always heading your way.
Kimberly T.
That report was so worth the wait!
We are all pulling for Jay and the entire Foster family.
xoxox
NCSU Child Care Team
We miss you all so much, and can't wait to have Luke and Jay back with us!! See you soon, and we love you guys!1
Your Bright Horizons Family @ NCSU
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