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!!

Labs

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!!

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!!

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!!

Make an on-line slideshow at www.OneTrueMedia.com

Updates, Updates, and more Updates

First off, CONGRATULATIONS DR. MARKERT AND HER TEAM! The piece that was done on Good Morning America and on Nightline on Dr. Markert and her team was amazing. I am so glad that she and her group are getting the attention that they so deserve! You all are amazing and God Bless you all!! To read the story if you didn't see it , please visit http://abcnews.go.com/Health/story?id=5379863&page=1. What a wonderful piece, congrats again! I really hope soon that our government realizes that if immune testing was done at birth it would save a lot of lives. Yes these tests will be expensive, but if the tests are not done at birth most of these kids aren't diagnosed with DiGeorge until 6 months old or later. By that time insurance companies are paying for multiple medicines to try to keep these kids healthy while they are waiting for the transplant (i.e. our hospital bills for Duke Hospital alone, not Children's, are over a million dollars). So, it seems obvious enough that the cost of testing at birth is worth it. This transplant still is not approved by the FDA either, so I will definitely be and advocate in any way I can for Dr. Markert and her team to help get the immune tests done at birth and to help get this transplant approve by the FDA.

Well I wanted to share a couple needed up dates on our little man, or should I say big now (34lbs.-no failure to thrive now).

We finally got our hands on the tetanus shot and our nurse will probably give it to Caleb on Sunday. Then hopefully we will get our first functional immune test within a month. NERVEWRACKING!!

We took Caleb to see Dr. Frangiskakis (our PCP for now who is in Children's Hospital in Pittsburgh). We have to see her instead of our PCP here in Wheeling that we picked when Caleb was first born as he has many doctors who are involved in his care (neurosurgery, neurology, craniofacial, allergy & immunology, endocrine, urology, ENT, orthopedics,the doctors at Duke, etc.) and doctor Frangiskakis acts as our quarterback in regards to all of his care. She is awesome!! We had to see her because 1. Caleb is gaining weight too quickly and 2. we are going to TRY to start increasing his feeds and decreasing his TPN (IV nutrition). She decided to adjust his lipids (his fat content in his TPN) so he isn't getting so much fat in his IV nutrition and hopefully his weight gain steadies out. We have also began the scary task of decreasing TPN and increasing his g-tube feeds. This is scary as last time we tried this he was life-flighted back to Children's due to several electrolyte imbalances. But we need to see if his immune system is kicking in enough to allow his gut to handle feeds. WE have increased his feeds to 5mls an hour so he is now up to 20 mls/hr (almost an ounce). We will try to increase his feeds by 5mls twice a week. This will involve constant labs (I drew more blood today and Brian took it to the hospital) so we can keep an eye on his labs and we also have to keep an eye on his physical state. So keep your fingers crossed and say prayers that the transition goes smoothly.

Today is also Caleb's monthly IVIG (supplemental immune system) infusion. I started it around 2:00 and it takes about four hours to infuse. This infusion consists of frequent vitals (blood pressure, temperature, oxygen saturations, respirations, etc.) So he gets annoyed with this infusion quickly as I am always bothering him for vitals. He's a trooper.

Caleb continues to roll on his tummy more and more and yes he is up on his knees. Amazing.

We have begun to do more work on sign language with Caleb as he signed 'more' for the first time last week. So we got flash cards and we work on a couple a day. It took awhile to get to 'more' as you have to bring both hands together to sign it and Caleb has texture aversions, which means he does not like touching things (his own hands, you touching his hands, etc.) So it was so exciting when he signed 'more' last week and clapped his hands more frequent. Some days his texture aversions are worse than others. He may not want to touch anything and other days it doesn't bother him so much, but it really never seems to be a non-existent issue. This is more a part of his CHARGE syndrome than his DiGeorge Syndrome.

He is still not eating, but we are working on it. I have decided to let Caleb explore foods on his own. Therefore, we put some different foods in front of him and let him explore. This will suffice for now, however, Brian and I believe we need to bring a therapist in for speech and oral stimulation therapy. We will just have to convey to the therapist that she needs to be the first case of the day for her, she will have to wear isolation gear as everyone else, and she can't come if she is sick.

His skin is looking okay, scalp is the worst. Dr. Markert suggested an ointment to put on his skin to help control the dryness. She said that in Caleb's case in may take awhile for his skin and his gut (digesting feeds) awhile to catch up with his immune system.

Well for now that seems like enough updates...even though there are many more!

Oh also, our camera is broken again and so we didn't get any pictures of Caleb's second birthday. However, I did use our video camera, however, I am not sure how to transfer the stuff of the tape so we can view it other than on the video camera (OOPS) I'm trying. So as soon as I can get any pictures I promise I will post.

God Bless you all!!

Thanks for checking in on our little man!!

God Bless Caleb!!

Nightline

Caleb's Dr., Dr. Markert will be on Nightline tonight talking about the transplant she does on kiddos like Caleb. ABC at 11:30.

God Bless Caleb!!

Jen found the story on Dr. Markert on GMA's website

Jen found the story on Dr. Markert on GMA's website.

Per Jen's email:
Hey Caleb Fans-

If you have checked Caleb's Blog, the story that I saw this morning on GMA is on the website now. If you go to the link below there is a section in the middle of the page that says "Videos" and the top section is for today. About 3 boxes down there is a small orange "+" sign in a box. Click on it and it will open up more stories. Scroll down a few until you see a story titled "One Doctor's Miracle Solution" with a picture of a beautiful little girl. There you will find the segment from this morning and get to see the woman who so diligently fought for and cared for our amazing Caleb!! It was kind of cool to finally be able to put a face to the name of the woman who, with her medical knowledge and Caleb's parent's undying love and devotion, turned this boy's life around!! It was so cool when I saw it this morning and even more cool the second time around when I watched it on the web when I wasn't trying to track down Sarah.&nb sp; Boy do I sometimes miss those days from college when I could just yell down the hall to her to change the channel when something cool was on, HA!! HA!! I believe I understood them to say that there would be more on this story tonight on Nightline on ABC. I have my DVR set just in case!! God Bless you all! God Bless Caleb!! God Bless Dr. Markert!!

http://abcnews.go.com/gma

"One Doctor's Miracle Solution"

In God's Love-
Jen

God Bless you all!!
God Bless Jen!!

God Bless Caleb!!

DiGeorge Highlighted on Good Morning America

Good Morning everyone. I just wanted to share some information. I just got a phone call from my best friend Jen, who said that Dr. Markert was highlighted this morning on Good Morning America. They talked about the transplant that the immunosuppressed kids get, like Caleb. Jen believes they may discuss it again tonight on Nightline for all who are interested.

Thanks Jen!

God Bless Caleb!!

Exciting Immune System Milestone

Well we have reached a milestone in Immune development.

There is a point with all of the transplant kiddos when Dr. Markert decides to try to give them a tetnis shot (remember these kids can't get immunizations or it will kill them). So she tries the tetnis and then they will do the first 'functional' immune test a month after the shot. I know confusing, what have all the other tests been?!? They have just tested to see if the immune cells are actually coming in. Which they have been but now they want to see how well they are working. But you have to see how they react to something, hence, the tetnis. This is so exciting I remember even before Caleb had his tranplant that they talked about this shot and it seemed so far away, and its here. The reason why they do the tetnis before any immunizations is because tetnis is a bacteria (and only part of the bacteria) where immunizations are live viruses. So we are trying to get a pharmacy around here to supply the tetnis and then it will be administered at home. I am drawing some blood work in the morning for Duke (not a complete immune study-but some labs she wants before the tetnis is given).

Also, more awesome news!! Caleb has sat up on his own twice now. He is so amazing. He did it right before his second birthday. What a tough guy! And yes I have to say it again, he is so darn cute.

I have to keep this short as little man is getting up from a nap and once again, no nurses today.

Birthday video soon to come too!!

God Bless you all!!

God Bless Caleb!!

Happy 2nd Birthday Caleb

Happy 2nd birthday Caleb!! We love you.
Pictures and video are soon to come.

God bless Caleb!!