Okay . . . so I posted the other day that Caleb was signing more. BUT he actually signed it yesterday, probably around six times in a row, and knew what it meant as we were playing with his shape sorting game and I would hand him the pieces. When he wanted to play again he signed more. So touching!
Also, today Caleb sat up on his own around seven times in a row! So amazing.
Who knows how soon again he will sign more or sit up, but, we know he can do it. We are so proud of him. What an inspiration!
Well we increased Caleb's feeds up to 45 mls/hour and we may have to hold at that rate for awhile. Today Brian and I noticed that his stools were getting watery again. So far they are not frequent (if they get too frequent he may get dehydrated and labs may go really abnormal), but we don't want it to get to that point. I will be drawing blood in the morning to check how his body is tolerating the change too. We may have to decrease his feeds a little and go back up on the TPN. Not sure yet.
Okay, I don't want to be a drag but I have to post about this because it is my way to vent. Honestly, if I wasn't trying to go back to work to pay bills, I would get rid of our nursing care. Our nursing company has probably hired about eleven nurses. Seven out of the eleven didn't show up for their first day, and this continues to happen. The company calls me the SAME DAY the nurse is to come to the house to let me know she is coming and guess what - now show. One of the girls that didn't show up for four days in a row the company didn't even know that when I called, YET they wanted to try to send her back to the house a couple months later. One nurse that came in lied about her prerequisites and didn't even know how to take care of his feeding tube (pretty basic task for a nurse). Another nurses almost double dosed Caleb on one of his medicines on her first day if I wouldn't have caught her. Another nurse didn't show up for her second day and they couldn't find her and then they said 'yeah she is a little different'. As I have stated before Caleb qualifies for 16 hours of nursing care a day. We have never seen that! NEVER! We get about 8 hours now for about 4 days a week. So it is REALLY stressing me out lately. I do feel a little run down and very stressed because of this. Went to the doctor today for a bad sinus/ear infection and SURPRISE I have high blood pressure. I was one that always had below normal blood pressure. What gives?!?! Again, I don't mean to be a downer, but it's hard and such a continual disappointment that a service that is supposed to be there for your child and your family is still not being provided 8 months later. They guaranteed me when they took the case they could staff it. They can't get nurses to show up and the ones that do....they can't take care of him like they promised the company. I wish they could just pay me for the service they are not and have not been providing. I don't understand why it is this hard to get nurses to show up for work?!?! Do other families deal with this? I really really hope other families don't have to deal with the problems we have dealt with in regards to nursing. It is not fair and very disheartening.
Okay sorry for my ranting, but I needed to vent. I have been pretty upset today as I had another issue with nursing. I'm sorry, I am usually upbeat, but so disappointed with the nursing company and who they send into our home.
Okay got that out of my system. I will let you all know how his blood work looks either tomorrow night or Friday morning. OH YEAH new pictures are coming!!
Again, thank you all for checking in on Caleb. You are a wonderful support system for our family. God Bless you all!!
God Bless Caleb!!
4 comments:
Sadly, your nursing story is not unusual. I have read horrible stories on Ben's and Reuben's blog about unreliable nursing. I've read two more times than I should have about trached children who died when their trach came out--the parents, who did not have nursing, momentarily out of the room (one was just brushing her teeth).
We only had night nursing for a month right after Evan came home, and in retrospect I can't believe how incredibly lucky we were with the nurse our agency hired. She was the only one we had, and she was really consientious and caring.
I don't know why the state won't pay parents to provide nursing care. It would be cheaper, and the care would be way better. I've always thought it was crazy how if as a parent, you bailed on your kid, and they got put in foster care they would automatically qualify for coupons and the foster parents are given some money to cover costs. But if you are responsible and step up to care for your child, unless you make next to nothing you barely qualify for anything once they are out of the hospital.
Obviously, people making the rules do not have special needs kids at home. If they did, I can't help but think things would be different.
Keep up the awesome job Sarah!
Hugs,
Sarah, Jeremy, and Evan
wow they shouldnt have jobs if u dotn wanna work then dong go for the job is my view
Caleb! You're the cutest thing! He has gotten so big and his hair...! His lip repair looks great. I can't believe how grown up our little men are getting. It's so bittersweet isn't it?
I'm so sorry your having troubles in the nursing dept. I pray that they send you some keepers very soon.
Thanks for that montage, it was wonderful to see how grown up Caleb's getting. He's doing so great developmentally! Yeah Caleb!
Take care you guys...
Love,
Corrie
It is sad that these people got to school for nursing and then never show up for their jobs. I bet you and I could go and get a job with this company and do so much better job them most of them do. Eva never got nursing care our insurance would never pay for it. I hope that super nurse shows up soon and does everything she can for Caleb.
Hugs,
Crystal and Eva
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