A Line Infection

Okay so they are pretty sure it is a line infection. A pretty 'sticky' one too that loves to stick to the plastic in the line. So he has had a couple of positive cultures indicating he has had bacteria in the line even when he is undergoing pretty strong IV antibiotics. If one more culture comes up positive, they will have to remove this line, wait until the infection clears and then place another line. While they would wait for the infection to clear they would try to get a peripheral (surface IV) to at least provide him fluids. They would not be able to give him his TPN and Lipids (his nutrition as he is not taking much by mouth right now) though as they require a central line as they are harsher on the veins. This line requires him to go to the Operating Room as it is a line that is somewhat tunneled a good amount under the skin so tissues can grow around it and hold it in easier. This type of line is hoped to be used for many months. So we are hoping he can fight this infection and the cultures stay negative.
Caleb rolled from his tummy to his back yesterday!!!! He is also very close to rolling over onto his tummy. You have to understand he has had many central lines that have prevented him from working on this so he is doing great!!! Also, Caleb has started to push up on his feet while we hold him underneath his armpits and bear weight on his legs!!! Making great progress!!! I will be adding pictures of all of that this weekend when Brian gets here.
His earlobes have been puzzling the docs, they have swelled. We do not think it is a side effect of any of the meds so we are not sure what is causing it. He has not been able to wear his hearing aid for awhile because of the swelling. We are waiting for ENT (Ear, Nose, and Throat) to come and see him to see what to do about the swelling and the hearing aid. BUT, we have noticed that he can hear somewhat without it, so we are able to communicate with him. I think I am going to go ahead and purchase some sign language tapes anyway. We are not sure if he will need to sign or not, but what a great tool for him to learn!!!
That is all I have for now, as soon as I have more I will definitely post.

Still no date set for Duke

Okay well first they think the high fevers were due to a line infection. He has had three days of negative cultures though from his line so that is a good sign, especially since they say this type of bug likes to stick to the plastic in the lines. He also got another dose of IVIG, transfusion, and albumin to keep his immune system, blood, and absorption levels in check. Also, while we were holding him this weekend, Caleb managed to hold him self up for a couple seconds, we think we are getting really close to him holding himself up.


I can't believe I have to report this after being told last week that we should be going to Duke end of March or early April, BUT we were told today that it now looks like end of April! I can't believe it! It is very tough to sit here and hope and pray every day that he doesn't catch anything that could pose any life-threatening situations for him. The immunologists from Children's told us today that Dr. Markert (doctor from Duke) is meeting with the chairman of her department to see if there is anyway she can take Caleb even though she at her 'limit' on immunodeficient kiddos. Needless to say we are very frustrated!!! Very!

On a lighter note, we got a wonderful gift from our friends Amy and Max. They made Caleb a scrapbook with all of Bubber's photos with wonderful sayings and poems. It is absolutely adorable!!! We have already showed it off to all of the docs and nurses. The best part is we talk about Amy and Max often, and a lot of the nurses and docs have seen his card above Caleb's crib or his blog when they stop in our room and we are reading it on the computer and today when the package arrived one of the nurses, Chelsea, came running in and said 'you got a gift from Mighty Max'. Too cute!!! Thanks Amy and Max, we really needed that today...getting pretty tough to just sit and wait. Thanks so much guys...we love you!!!!

Line Infection?

Well...we may have an idea of what is causing the fevers. A bacteria has been found in some of the cultures taken from Caleb's central line. In kiddos with an immune system this bacteria normally wouldn't cause an infection, however, this may be what is causing Caleb's 102 plus temps. So they have him on some pretty strong intravenous meds to try to fight this infection so he doesn't have to get the line replaced.

Also, Caleb has developed a pretty persistent cough and sneeze along with his congestion. We are hoping this doesn't progress into anything else. The concern with immunosuppresed kiddos is a 'silent pneumonia'. His SATs (saturated oxygen levels) are still looking good, knock on wood. If the SATs were low and would not be able to come back up that would necessitate a ventilator which a lot of immunosuppressed kids are on before and post transplant until their immune system starts to function somewhat. So we are praying that this does not develop into anything.

Caleb has also had a higher heart rate than normal when sleeping. They are trying to manage this through boluses (larger fluid amounts via IV). But his diarrhea is pretty frequent so it is a heart thing to be managed. If it continues they may to an Echo tomorrow to make sure his heart is okay.

His shunt was turned down, so it will drain a little quicker, to help his ventricles drain a little more. The neurosurgeons here do have some concerns regarding the shunt around transplant because before Caleb has his transplant he will go to the ICU for 3 days before the transplant to have an IV infusion to completely knock out his immune system. This infusion can drop the platelet count which in turn if not managed well can cause a bleeding risk in the brain. Therefore, we will have neurosurgeons (colleges of Caleb's doctor here at Children's)at Duke watching him closely so hopefully this will not be an issue.

As far as updates, this is all I have for now, please keep Caleb in your prayers.

A lot has happened

Sorry all with the delay in updates....we have had a lot going on in the last week and Gram Byrum is sick so it has been me and Bubber for a couple days. So what is going on? I will try to get right to the point.
We have found out that Caleb has a cyst on his earlobe that is actually, sorry to be graphic, pussing and bleeding off and on. He also has been a little more congested than normal and has been throwing up mucus and his earlobes have been swelling. They also were concerned that Caleb had a condition called sarcoidosis. To read more about sarcoidosis go to http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html . In addition, Caleb has run a pretty high fever twice in the last week. So what is the cause of the fever?!?!!? Well they decided to do a catscan to check his sinuses and his lungs to check for sarcoidosis. First of all his lungs look good, no evidence of nodes which leads us to believe there is no sarcoidosis. When there were checking his sinuses they got a glimpse of his ventricles, which is what the shunt works to drain. They were concerned at the size of his ventricles as they looked larger so they took him back down for another CT scan of his brain. Good news, they think the shunt looks like it is operating and the ventricles do look a little larger than they did in December BUT that could be,good news, that his ventricles are growing with his brain. Good news that his brain is thriving. His ventricles though are very generous and probably will be the neurosurgeons are coming by today to see if they need to adjust his pressure setting to maybe allow the shunt to drain a little more than what it has been draining. So again what is causing the fever, they are concerned about the cyst on his ear or a potential central line infection. We should know more sometime this afternoon.
As far as when we are going to Duke, we are still waiting on a date. We do know however that insurance has approved transportation, so he will be flown by a jet with Children's transport team down to Duke. So he and I will go by ambulance to Pittsburgh airport and then fly from their to Raleigh, Durham airport. So I think I have added all I know at this point. Again, sorry with the delay in updates but as soon as I hear anything more today I will definitely post it.

Happy 8 Month Birthday Caleb!!!

Caleb turned 8 months old yesterday!!!! WOOO HOOO He is doing well. He is still congested, but we are hoping that is due to reflux...lets keep our fingers and toes crossed!!! He really does not have any desire to eat. . .he has been throwing up phloem. Also we are wondering if the Cyclosproine (immunosupressant/chemotherapy) may be making him a little nauseated. But as you can see him playing with his toy to the right, it's not keeping him down for very long!!!!

Also, had to post the pic of me holding him while he held his head up. His IV pump was beeping and blinking and he thought it was very interesting, he starred at if for a couple of minutes. That's our boy!!!

We also have been able to do some more tummy time, he is doing great!!! Every day he amazes us!!!

Also, we have met other CHARGErs that I will be posting their personal websites on this blog so you can read about other tough little kiddos like Caleb.

HAPPY BIRTHDAY BUBBER!

Another Fun Weekend and a Visit with Daddy

Another fun weekend with daddy. Caleb is all about the texture of his daddy's beard, loves to reach out and try to put his hand on his daddy's face. TOO cute, if you ask mommy!!!!

Okay had to enclose this picture of Caleb and mommy too, as he was so funny when he was laughing at me when he was up on my shoulder.

Orthopedics came on Friday and said Caleb's hips, per an x-ray, look good. They are a little 'developmentally delayed' for his age but they will be as he has been in a hospital which delays sitting, crawling, etc. The docs believe that as soon as he starts to put more weight on those joints that they will become stronger. Again, we will have to watch him closely when he starts to crawl and walk.

Gram and Pap Pap Byrum got Caleb an exercise chair that daddy and mommy tried out with Caleb this weekend. I can't even put into words how proud Caleb makes us, he is sooooo strong!!! He did great, he even pushed off flat-footed (as that is big as you don't want them to try to toe walk) a couple of times on his own while he was in his chair. He doesn't have full trunk support yet (but he is getting better every day) so we supported him with a white sheet around his trunk. AND can I just take a proud parent moment here and say what a CUTIE!!!!!

Caleb's Physical and Occupational Therapists, as well as his docs, are very encouraged with his developmental progress. He is doing great with 'cause' and 'effect' exercises too!!! He is fighting along. I know that sometimes these items that I post regarding developmental milestones seem like normal things for an every day child, but Caleb has CHARGE syndrome which can make some minor milestones seem so significant. From the CHARGE syndrome foundation website 'Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.' Thefore, you can see why sometimes what others see as the 'little things' are no so little to us.

He still has a runny nose and we are hoping that clears up within a couple days and does not progress into anything else, so please keep the prayers up that this runny nose goes away!!!

Also, please note, I am going to start adding links to the upper left part of the page for Caleb's pictures, his old blog, information regarding Duke, information regarding CHARGE, etc.

Well the little one is getting up...gotta go.

Cyclosporine Levels are Rising

Well, Caleb's Cyclosporine levels are rising, so hopefully that will help his skin and stools. He again has been itchy today so he is still taking medicine to help him with that. His poor eyelids are peeling. Also Caleb has developed some nasal congestion, we are hoping he is just teething and that it is nothing else. The good news is that he has not shown any signs of fever or higher white blood cell count levels so hopefully it is just a tooth.

It is hard for him to sleep comfortably.

This is a picture of him with his Praying Frog that our good friends, the Seidler Family, gave to us. I got a good picture of him with it today as we finally got him to sleep for a nap. They told us that FROG stands for Fully Rely On God. So we love frogs!!!! What's even better is it says a prayer so Caleb listens to it every night before he goes to bed.

OH and yes we are still trying to get used to the concept of eating baby food. Hard for him to get used to the new texture.

Just wanted to include this picture of Caleb and Brian because it is one of my favorites!!!!

Getting a Little Better

Today was still a little tough for Caleb. His skin has gotten very dry and his stools have picked up. They have bumped up his Cyclosporine levels to see if that helps. There were some issues with that in the last couple of days, not enough of a dose or too high of a dose. He is still taking anti-itch meds and Tylenol to try to make him more comfortable. Poor guy. He manages to throw a few smiles our way though to let us know that he will be fine. He spiked a little of a fever yesterday but it has stayed down since then. That makes us nervous!!! They have cultured his central line to make sure nothing is growing in that and they have checked his white cell count to make sure he is not getting anything. SO FAR so good. . . keep you fingers crossed.

By the way, I am still trying to upload his videos so hopefully soon I will get that up and running.

Wonderful Aunt Jen Straub

Okay because Caleb is blessed to have such a wonderful Aunt, Jen Straub (pictured with Caleb awhile ago - as she hasn't been able to see him because he is not allowed to have visitors due to the Immune Deficiency), we now have a website that has all of Caleb's photos on it for easy access. I will update this website as much as I update this blog.

THANKS AUNT JEN WE LOVE YOU!!!

Enjoy everyone!

http://www.kodakgallery.com/hlebiczki

Good days and Bad days

Well. . . Caleb had a great weekend, his daddy came to stay for the weekend and wow did they have fun. Caleb's skin was really clearing up and he was doing well.

He even had his first few bites of baby food. He is still trying to get used to the texture difference. But he did VERY well. That's our Bubber. OH by the way we have two nicknames for our tough little kiddo, Bubber and Ca-Bay(pronounced Kbay).

Unfortunately, his Cyclosporine levels dropped over the weekend and his skin started peeling again and he got dehydrated and needed two fluid boluses (quick doses of fluids) and one Albumin (blood by-product that prevents the fluid from going to the wrong spots) bolus. Now he is a little too 'puffy' so we are hoping his diuretics that he takes will help him get rid of some of that extra fluid. He wasn't in a great mood this morning, but as the day goes on he is getting a little better. He was able to watch his Baby Mozart video that he loves so much. Which by the way the hearing aid is really helping him. AMAZING!!!! We hope that all he will need is the hearing aids. But after his video he got cranky and wanted to go back to bed. He is more tired than normal too because he is taking a medicine to help him with itchiness caused by his skin issues. He has also been really finicky as far as feeding goes. We have heard that Cyclosporine can cause you to have a very bad taste in your mouth or can cause nausea so we are wondering if that is it. We hope he will overcome this 'aversion' and start eating more again.

AND MOST OF ALL THANK YOU. Thank you too all of you for the gifts you are sending to the hospital, donations, prayers, donated flight miles, candle fundraiser, etc. We are so blessed to have a circle of friends like you all. I cannot begin to thank you all enough. I wish I could do something for you all as you have done SO MUCH for our family. It is very difficult to be away from everyone for so long, but when wonderful people like you all watch over us as you do........it makes it a little easier. We love you all and thank you.

For more pictures of Caleb please visit http://www.kodakgallery.com/AlbumMenu.jsp?rand=1173212311325&UAUTOLOGIN_ID=813113751107&UAUTOLOGIN_ID=813113751107 If this link doesn't work please let me know!!!

Another does of IVIG

Today Caleb is getting another dose of IVIG (Intraveneous Immunoglobulins)-his temporary doses of an immune system. He also had the second batch of blood drawn today for Dr. Markert at Duke. So we may get results concerning that within a week or so. It is pretty much another deep analysis for her to work him up as well as the what type of thymus tissue he will need for his transplant.

Good news (we love getting that) - We really think this hearing aid is helping Caleb!!! Since all docs, visitors, and nurses are in isolation gear (masks, gowns, and gloves) when they come in... Caleb would not be able to see their mouths or facial expressions BUT NOW that he has his hearing aid he is doing great he is responding to what people are saying behind their masks. In addition, the cyclosporine is really helping his skin, the t-cells are not attacking it for the time being. He looks great, not as many skin break down issues. It was so exciting, one of the docs that hasn't seem him in awhile came in to visit as many nurses and docs have as they have heard reports on his skin and hearing and how different things were. Her exact words 'I am so excited, this just made my night. I have left this room before really worried about Caleb and he looks so good tonight. He can definitely hear look at him responding. I am in such a good mood guys (talking to me, Brian, and Caleb). He looks so good!!!' So that really boosted our excitement level.

He really looks good guys, what a tought kiddo-he amazes us every day and makes us so proud. Now just keep the prayers up that he stays healthy before, during, and after his transplant.