We were finally released last night. We had a visit with a home health nurse and she trained us on the feeding tube and putting heparin in his central lines. Wow!
Zachary is doing well and Jason and I are in the process of decluttering the house and organizing his stuff. Gotta take the Christmas tree down still!
Unfortunately, none of us were a match for Z. His WBC are up again from 10k to 17k. He got a blood transfusion on Wednesday before leaving because the chemo caused his red cells and iron to go down a bit. He was up to 8lbs and 5oz when we left!
We go see the hematologist tomorrow. He will do another WBC. We are waiting on a call from Children's hospital about the bone marrow transplant.
I want to thank everyone for their prayers. I also want to thank everyone that brought us food, visited us, called and emailed. You all are such a wonderful support system for us and I have no idea how we'd manage without you all so thank you!!!! I know there are many emails and calls that I haven't returned and I do apologize. We are just trying to settle in w/all this new stuff we have to do and keep Jonathan on his normal routine. I need to thank my friend Julie for sending Zachary a hat for his birth! Julie we love it! I will post pictures of him in it soon. You are so sweet. Our friend Kristin made the hat too. I'll have to post her website cus she does great work!
Jason's parents arrive on Friday and I am so thankful. He is returning to work on Monday and I have to admit, he has been handling a lot of the tube stuff b/c I am too nervous. I guess I have to step up to the plate and do my part. I nearly fainted at the hospital when they showed us how to insert the feeding tube. I can't even watch them change the dressing on his central line!
Anyway, I know I am forgetting stuff so please forgive me. We are closing to believing it is the JMML and not just a fluke. He has lots of the characteristics of it. He may need more chemo soon. He is such a strong little man. Jonathan and I still pray to Jesus and Grandma that they make him better soon and watch over him. I also know that in addition to his special guardian angel Grandma Keeven, he also has 2 very special little angels up there pulling for him.
Gotta run and check on Z and declutter my bedroom. Love to you all!
10 comments:
I'm so glad Z is home, Jennifer!! (((hugs))) And I hope a match is found quickly. I am on the bone marrow registry and I'd be there tomorrow if I were matched!
Welcome home, Zachary the SuperBaby! We are praying for a match on the national registry.
Love,
Judith and Darin
Jen,
I'm so glad that he is home and I hope they find a match quickly. Many ((hugs)) to you and Jason. Sending strength vibes your way! More ((hugs)) to Zachary
I'm am so glad to hear that all of you are home. I hope they find a match for Z soon. Our thoughts and prayers are with all of you every minute of the day.
Sandy & Eddie
Hey guys. Talked to sandy. Talk to your doc on how I can get tested for Z. Always in my prayers. Later, Eddie
I'm so glad you are all home! I love the pics from your last post. He's just so adorable!
Sorry to hear about the marrow test on you and DH not being a match. Hopefully you'll be able to find one on the national registry.
If there's anything I can do, let me know!!
Jen, I'm so glad you guys are home now! I am thinking and praying for Zachary all the time. I'm also praying for a match as soon as possible. It's obvious Zachary is a fighter - just like his Mommy!
So many hugs! Please let me know if there's anything I can do.
Stephanie
Jelly sending tons more P&PT your way and Im soooo sorry you were not a match to little Z :( I am on the registery for bone marrow donation....If you need me to do anything like get blood work done just send me an email and Im there for your sweetie.....Im thinking of you tons and sending much love your way. (((((HUGS)))) to you all and kisses for the boys from us
I'm so glad your little man is home and has bulked up so much! But, I'm so sorry that you guys weren't a BM match. =(
Lots of love to you all. (((HUGS)))
I am so glad you are all home. Hang in there hun!! I am praying for you and your little guy. I hope they find a match soon. Just know you are in my prayers!!
((HUGS))
Elle
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