Today was the last day of pheresis. It is my understanding that there will be no more rounds of this, so good-bye to our sweet pheresis team and their crazy Dr.Suess pheresis machine, thanks for the good times! Tomorrow Oakes will get a "chemo-like" drug (he has been getting this once a week since the rejection was diagnosed) followed by some lab work. Results of those tests should be back mid-week and will tell us if the aggressive chemo drugs, steroids, pheresisand meds have been effective in reversing the rejection. In the last few days Oakes has been switched from one pain medication back to morphine, his catheter has been removed, he is at full feeds and he has been blowing out multiple diapers a day - likely a side effect of all of themeds he is on. He is not nearly as puffy as he was about a week ago or even days - a sign that his kidneys are working better. His vent has been weaned some, but nothing significant. Some days he has kept up with the adjustments to the vent, but other days he struggles a bit and the vent gets turned back up. He is no longer laying flat, his nurses now have him up in his boppy, which looks like a comfortable change to me.
Isla still has a yucky nose, but hasn't had a fever in probably 3 days. I don't think I got her germs in hind-sight, my symptoms were very different and I think I was just showing symptoms of flaring allergies. Still, I am masked and gowned and keeping my distance.
Praying that this week will be another good week, with several Oakes sized steps in the right direction. Heartstings to all of you! Becky
Oakes sleeping on his 5 month birthday!
Hi Becky,
ReplyDeleteGlad that you guys are about done with the crud. Hopefully isla is doing well with the potty. Anyhow, I wish that I could come to the Oakes fundraiser. Hopefully there will be one in the future that I can come up to.
Anyhow, happy to hear Oakes is chugging along but I'm not surprised. He is just a miracle in pampers. ;)
Sending all kinds of good thoughts your way,
Chris s
Thank you Chris! We will have several other events coming up, so hopefully you can come to one of those! Love your line, "He is just a miracle in pampers".....I might borrow that at some point! XO, Becky
ReplyDeleteI love it!!! He really is a "miracle in Pampers!!!" We wish we were in St. Louis to come to your fundraiser. We can't wait to hear how successful it will be!! Your canvas for Isla is incredible. You are so incredibly talented! We are praying that this will be another positive, healing, boring week for the Mighty Oakes and Ortyl family. Please know that we are sending you hugs, prayers and lots of love from California. xoxo, Emily and Jennie
ReplyDeleteGlad you are feeling better. Best in your fund raising adventures. I think he definitely looks like he's made lots of steps in the right direction in the picture you posted yesterday. Nice work, Oakes, and family. Here's to another good week.
ReplyDeleteHAPPY 5 month BIRTHDAY to my favorite nephew! I Love you all,
ReplyDeleteAunt Sally