So we are still trying to get settled in here at home. We finally had Christmas this past weekend. It was so nice. Caleb got more toys-imagine that. His grandparents and all his aunts and uncles love to spoil him. Thanks everyone.
I wish I could send thank you cards out to all of you for your generous gifts, cards, emails, etc. I am just so very busy and that is no excuse. Thank you also to all of our friends at Xerox (where Aunt Jen works). They sent Caleb so many wonderful gifts: clothes, diapers, stuff for his crib, etc. That we really needed! Thank you all. It amazes me how many wonderful people we have been blessed by that have come into our lives in the past 18 months. Thank you all.
Caleb did not have a UTI, but is having some abnormal labs. Some of his levels are not within the norm and hopefully we can get some of them stabilized with his new TPN. We will have to wait and see. We have clinic appointments next week so maybe we will learn more then. They are also planning on doing his next set of lab work for Duke while we are there so PRAY HARD FOR TCELLS.
On to nursing care. I think we were spoiled by the wonderful nurses at Duke and Childrens. We do have 1 nurse, who comes 8 hours a day monday through friday, and she is very good. However, I hang his IV medicines at night, do his dressing changes, change his cap on his IV etc. It has been very hectic. The company who does his IV meds is pretty much worthless, they keep messing up his drugs and if it wasn't for Brian and I double checking what they send we could have had some big issues. We do qualify for 16 hours a day of nursing care, but at this time we are only getting 8 hours a day Monday through Friday. So needless to say, I have not been really impressed with that so far either. But Brian and I have gotten in to a routine and have been working hard to get a routine down together. It is a shame what we were lead to believe didn't happen. But what can you do-
Well Caleb is only down for a nap for a short time and I have to get his IV meds out of the frig, get some laundry done, and do some chores around the house.
Special prayers:
Friends of the family lost their baby girl Victoria this past weekend. Please keep the parents, the brothers, and the extended family in your prayers.
Another friend of the family's son was in a car accident a couple months ago and was paralyzed. He is slowly regaining some movement in his limbs. Please pray for his family that he will continue to make progress in his rehabilitation.
We love you all and thank you for continuing to check on our little man.
God Bless you all!!
God Bless Caleb!!
7 comments:
Even though it sounds like things are hectic...I'm so glad that you are all at home together!!! I wish that the nursing company would get you everything you need and that you certainly deserve!!! It must feel good though to at least be in your own home, your own bed, your own shower...and have your family there with you. How wonderful!
I will continue of course to keep you all in my prayers...I love you more than I can ever say or show...
Take care of Caleb, and take care of YOU too!!
Sarah,
Unfortunately, your story is a very common one in terms of the nursing. What Caleb should be getting and is getting are two completely different things. There is a shortage of good nurses, not to mention money to pay them. Don't let them tell you Caleb is not sick enough to qualify for more nursing (DDD used to tell me that all the time about Evan)!
Hugs,
Sarah, Jeremy, and Evan
Sounds like you're getting into some sort of routine - not an easy one, I'm sure, but a routine none the less. You have such a strong, loving team that brings joy and strength to the rest of us...
Much love to each and every one of you!!
Chris XOXO
GO Mommy and Daddy, GO!! you guys are so AMAZING!! God Bless you all!! We miss you so much! Kisses to you all, but extra big ones for Caleb!! We are praying hard for those t-cells!!!
God Bless and lots of love!!!
Aunt Jen, Uncle Andy, and Haleigh
Sarah, PLEASE don't give up on the fight for the 16 hours of nursing. Remember, this is a marathon, not a sprint, and you need the support. His care is intense and you need a break! Is it a matter of no nurses with the agency? Is there another agency available? Have they looked into hiring a new nurse?
Please email me and let me know how I can help...my stepmom is a nurse at OV and may know people too. Seriously Sarah, take care of YOU so that you can be there fully for Caleb now and in the long term. Ok?
Thrilled that you are home...but just worried about you too!
Love, Amy and Max
I am so happy to hear you are still home and there is no UTI, Eva just got over one and it was horrible.
I agree with everyone else push for the nurseing, I never got any but I know you need it, there are IVs and all kind of things this little boy needs and what he really needs is a well rested mommy.
Hugs,
Crystal and Eva
SOOOO good to hear from you guys! Give the man a hug from me and tell him I said hello. Love and miss you all!
Bridgett
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