Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Wednesday, August 20, 2008

Are You Kidding Me

Okay so to continue on the nursing coverage issue:
The nursing company was starting to get their act together and had hired an RN. Totally different between an RN and LPN in home care as RNs are the only ones who are allowed to touch IVs. Due to the fact that we have never had an RN, as promised by the nursing company, I had to administer all of Caleb's IV therapies which is a daily task. He also requires different monthly infusions which require constant vitals and monitoring and once again no RN was ever provided for those. Nevertheless, it seemed like we were going to get some days of 16 hours of nursing coverage but not all just yet. It is a shame it took the nursing company 7 months to get at least a couple days of 16 hours of nursing care that he qualifies for. BUT, a big surprise happened two weeks ago. I got a letter in the mail indicating that the insurance company was going to pull Caleb's nursing care all together based upon their review of his nursing hours that were being provided and one doctor's comments who hasn't physically laid eyes on Caleb since he was about 4 months old and who knows nothing about him. Fortunately, Caleb's doctors in Pittsburgh received the same letter and called the insurance company and said they couldn't pull his nursing care because of his condition. After Caleb's docs submitted plenty of paperwork the insurance company did approve nursing care, BUT GET THIS, only for 8 hours 6 days a week. Caleb's doctors did try to get him the 16 hours that they believe he deserves but the wonderful insurance company believes that since we have been 'getting by' on the 8 hours that the nursing company has provided and because I can take care of the IV that Caleb only qualifies for 8 hours of nursing care 6 days a week. So I guess, first off who cares about that 7th day if I get sick the IV will take care of itself. Also, I am penalized for learning how to take care of Caleb's IV because the nursing company never staffed his case with an RN. Also, I guess they would rather me not go back to work, go broke, lose my house, and then when we have nothing MAYBE they will help. AMAZING!! ABSOLUTELY AMAZING!!

God Bless Caleb!!

Sunday, August 10, 2008


First, I want to thank everyone for the emails and comments regarding our nursing issues. The drama continues with that situation, how ridiculous.

Anyway, I couldn't post any sooner about the labs because SUPRISE been without a nurse since Monday. But the labs didn't look too bad on Thursday. So Caleb was scheduled for another increase in feeds and a decrease in his TPN on Saturday. We went ahead with that wean and stools so far don't look too bad (knock on wood). I am interested to see what his labs look like tomorrow. I should draw them around 11:00 and hopefully get some results tomorrow afternoon.

Speaking of tomorrow ...HAPPY BIRTHDAY BRIAN. We love you. Caleb and I are so blessed to have Brian in our lives. He is a wonderful father, husband, and friend.

I will try to post tomorrow about Caleb's labs but I am going to try to make Bri some dinner, and for those of you who know how well I cook . . .it may take a couple attempts. HAHA

Again, thank you all for checking in on us.

God Bless you all!!

God Bless Caleb!!

Wednesday, August 06, 2008

More, More, More

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!!

Friday, August 01, 2008

Couple More Updates

Hello all. . .

Well here are some more updates on the little man:

We have continued to wean his immunosuppression drug and we will continue to do so as long as his skin and gut handle the decrease okay.

We have started the communication with early intervention (therapists) so hopefully we can start working with Caleb on feeding, speech, PT, OT, etc.

We are continuing to increase his g-tube feeds and decrease his IV nutrition. He is now up to 40 mls and hour on feeds! So exciting a little over an ounce.

He did get his tetanus shot so hopefully Dr. Markert will be contacting us soon to request his first functional blood work to be drawn. We are anxiously awaiting for that call.

Caleb is amazing me every day. His new thing is he loves yelling our dog Saba's name. I don't think Saba likes it as much though, poor thing. He also loves books. So amazing he will sit and act like he is reading for hours, really hours. He studies the books so closely. Yes he's a genius-okay I'm partial. HA HA

Okay, so I'm a little puzzled by the video camera. I am still trying to get videos from his second birthday. I am sure it is easy to do . . .I am working on it guys!! I did get another part for the camera, so we should be able to take tons of pictures of Mr. Photogenic. He will love that. I do have some older pics from May and June, so I included those below. There are a lot of close up shots in this group. We were trying to get a bunch of pictures at that time in regards to his cleft lip and nose repair healing status for his baby book. I will be adding more pictures once we get some new ones taken.

Well I continue to look for a job, if I had a nursing degree I could get paid for the care I am providing Caleb. Although I feel like I have a degree. Our nurse Amy, has said she is willing to work longer hours so I can go back to work. She is great - we will really have to work together to make a schedule work as she is still our only nurse. It is not like I really want to go back to work, as I am afraid how it will effect Caleb's development as we do a lot of therapy together every day and I do not want him to regress. I do not feel like it would be such a determent to his development in another six months or so, but we have a lot of bills to pay and the economy is not really helping Brian right now as he is a loan officer. I have looked at options of working from home, but they all seem like scams. I did find out today though if I get my first aid and CPR recertified I can get paid some money for the care that I provide Caleb that we are not getting through the nursing co. We are going to be looking into that - anything helps right?!?!?

Well all I am and so is Caleb very tired as we have a couple long weeks in a row. Take care everyone. Thanks for checking in. God bless you all!!

God Bless Caleb!!