Benzen had an eventful couple of days. His white blood count has been up and down. Never high enough to start the meds again. His count was so low today that they decided to take his picc line out again because they did not want any infection to be able to seep in where the picc line was. The doctor on tonight told Amy that they are trying to decide whether or not to give Benzen the rest of the doses at all. There is some confusion on what they should do. 1. They could not start the meds again, and we go home when Benzen's white blood count comes back up. 2. If his white blood (when I say white blood count I mean "Neutrophil") count can come up to 750 on its own, they can start the meds again. If at that point they fall again below 750 they wait for them to come back up and start him at a half dose. If after the half dose it falls again they will stop the meds. 3. They may have to give him a medicine to stimulate his bone marrow to make more Neutrophil. Then revisit how they start his meds again. This is good news because he might get to come home early. The bad news is he might not get all the doses of the medicine that can fight off the infection and decrease the chance of hearing and vision loss. As much as I want him home, I think he needs the medicine. With his picc line out, Amy was able to put an outfit on him tonight. She has been dying to do that.
So, please don't be mad at us. We have been in the NICU since May 2nd. We see all the other people in the NICU without a great support system like all of you. We truly truly truly appreciate all the food, but we can't eat all of it. So, we made an R Angel basket out of some of the food and snacks that were given to us. Amy and I put this basket in the family waiting room. Not only was there a line up before we were done setting it up, but I checked on it and hour later and it was half gone (pics above)! As much as it meant to Amy and I, it also meant a tremendous amount to the other people in similar situations as Amy and I.
Please keep the prayers up for Benz. I don't know what is in store for him. I worry about him every second of everyday. I pray for him to be as high functioning as he can be. I pray for strength. I pray for him not to get picked on. I pray that he will not need any surgeries. I pray he will not lose his hearing or vision. I pray that, as his dad, I can be what my dad is for me. I pray for much more but try to live as close to one day at a time as possible. God doesn't give you what you can't handle, so I know I can handle this. He must think I can handle a lot, and I can. I would not trade this life or any part of it for anything.
Ben
Good Morning Little Remer Family! Ben, the end of your post is how I feel right now too. My brother, sister, and I cleaned out my father's house yesterday. While my situation is not even close to what you folks are going through, it's still sad, hard, and stressful. So I prayed for strength, I prayed for the sadness not be overwhelming, I prayed for it to just be done. I think it's ok to feel the way we do. I'm thankful that I know I have a God to talk to. I'm thankful that I have a family that loves me no matter what my faults are. And I'm thankful that I've had the people I've lost in my life, they have made it richer. I'm going to be a little weepy this morning ( my 24 hours) and move on. Thanks for sharing you life, it helps us live ours.
ReplyDeletePrayers and Love,
Josie
The least we can do is listen...and pray.
ReplyDeleteI've been wanting to comment on your blog but have been struggling with what to say. While I can't imagine what you are going thru, I can definitely understand all the emotions that come along with being a parent. And as Josie and others have said, thank you for sharing. You all have been on my mind most mintues of the day, and I appreciate being able to follow Benzen's story. I pray that this chapter ends soon and that Benzen will thrive and have many more pages to fill.
I know that God couldn't have picked a better family for Benzen! Honestly, the Remer Clan has always been one of those families that I've looked up to... the love, support...humor and all... is absolutely amazing and evident! You all will give Benzen the best life possible, without any doubt!
Thinking of you all constantly!
Abby