Happy 9 Month Birthday Caleb

Yes, he is a month older and looking great. Happy B-day bubber.

Well needless to say the meeting occurred on Monday, however, surgeries are on hold again as Caleb has been dealing with some nasal congestion. So all surgeons do not feel comfortable putting Caleb under general anesthesia as this may effect his lung, possible pneumonia if he would aspirate during surgery. So until we can resolve this mucus issue things as far as surgeries are on hold.

Biopsy results from Duke: Well it seems to the pathologist from Duke that Caleb does have a form of a milk protein allergy and may be showing signs of Graft vs. Host disease. Graft-vs-host disease (GvHD) is a complication that is observed after allogeneic stem cell transplant. GvHD occurs when infection-fighting cells from the donor recognize the patient’s body as being different or foreign. These infection-fighting cells then attack tissues in the patient’s body just as if they were attacking an infection. GvHD is categorized as acute when it occurs within the first 100 days after transplantation and chronic if it occurs more than 100 days after transplantation. Tissues typically involved include the liver, gastrointestinal tract and skin. GvHD usually occurs post transplant and not before they are wondering if Caleb's immune system is so suppressed that he was not able to get rid of my Tcells and they are fighting one another. This would be the first case Dr. Markert has seen of this case if it turns out to be GvHD. They will know after they get some blood work they took from me and compare it to the Tcells they have seen in Caleb. We should get those results sometime at the end of next week.

Also, Caleb has developed an umbilical cyst...another thing to add to the list. This would have to be taken care of in surgery also. They also have been keeping a close eye on his shunt as they are wondering if the new setting was working. They have decided to change the setting one more time to see if there is any change. If there is no change, they will tap the shunt.

Also, I am experiencing technical difficulties with my computer and cannot do my videos or view others' videos. As soon as I figure out what is wrong I will post more video.

Patient Care Meeting

First off, Happy Easter everyone. I hope everyone had a good Holiday.
The meeting occurred today and we found out the following: The doctors are still looking into his immune issues and the best way to treat them. There has never been a case as far as Dr. Markert is aware of that has presented this way. They believe that he 'may' have a Thymus. If so, he would not be a candidate for the Thymus Transplant anymore. So where do we go from there....she has contacted the NIH(National Institute of Health) and they are also working with her to decipher his blood work and biopsies. She is very dedicated to his case and continues to try to figure out what would be the best 'plan' for him to help his immune system. She is having her pathologists look at Caleb's biopsy slides to see what they can make of that. As soon as we get any updates from her I will let everyone know.
ALSO, we have gotten the go ahead from Dr. Markert to do Caleb's cleft lip and nose repair, not the palate yet. In addition, they will be able to repair his hernia at the same time. However, all of this has to be okayed by cardiology as Caleb has one significant ASD and one smaller ASD and we do not know how that will effect the estimated 4-5 hours under general anesthesia. The heart has to be reevaluated also to see which way the cardiologist wants to fix the holes, CATH Lab vs. open heart. Of course we are all hoping they can be fixed in the CATH Lab. So we are very excited that he will be able to have his much needed surgeries as he is having some issues with his mouthpiece as the Cyclosporine is making his gums swell and he is having feeding issues that hopefully can be somewhat helped by the repair. However, there may be underlying feeding issues related to CHARGE.
After Caleb goes through these surgeries and if everything goes okay, if the docs give their approval we could possibly go home for awhile until they figure out how to treat his immune system. Again, they are saying they are very stumped with Caleb's immune issues and have not seen it before. So at least we can get his surgeries done while we are waiting to see what the next course of action is.
I have included a video montage from Caleb's first Easter. Enjoy.

Make video montages at onetruemedia.com

Anxiously Awaiting Monday's Meeting

Hello all!!! We are anxiously awaiting Monday's patient care conference. We are still somewhat confused as to what happened regarding the transplant, so as we get more clarification (possibly after Monday's meeting) I will let everyone know. I just wanted to say that we don't have any of the newer blood tests back so no updates right now. Picture at right is one of the first times Caleb has seen himself.
I have figured out how to show video on Caleb's blog!!!!! Yeah finally!!! This is an old video, but I know noone has seen him in action in awhile so I wanted to post it as we thought it was pretty cute. Enjoy! As soon as we get a newer video I will post one.

Make an on-line slide show at onetruemedia.com

Transplant has Been Put on Hold

Yes, you read that right, his transplant has been put on hold!!! Why??? They are many conflicting opinions that we are trying to go through right now to try to understand what is going on. We found out on Friday that we have to wait at least another 3 months before Caleb could go to Duke. The docs at Duke say they have come across some indiscrepencies with Caleb's blood and they are now wondering if he may have a Thymus. There is a certain test they can do at Duke to see if any of Caleb's T-cells have been marked by the Thymus. The docs at Duke say they see some T-cells that look like they have been marked by the Thymus.

Unfortunately, previous tests have indicated that these type of T-cells do not react to viruses when exposed to them in the lab. They are not sure what is causing the T-cells to be marked and are wondering now if he does have a Thymus. One hypothesis is if he has a condition called sarcoidosis that is attacking his Thymus. The docs here don't think it is sarcoidosis and that Caleb needs to get to Duke. If Caleb has a Thymus, it is our understanding, that he is not a candidate for the Thymus transplant. They have started Caleb on some steroids to see if they can 'trick' his Thymus so it thinks it is fighting an infection and then they will re-test his T-cells. Who knows what the time frame is for the steroids and if they will work.

It is very frustrating as the docs here are saying it is over their heads, but the docs at Duke aren't ready for him yet. So where do we go from here....I wish I had an answer. Brian, Dr. McPeak (one of Caleb's diagnostic docs here who is fabulous) and I this weekend decided to request a group meeting with all docs including Duke docs to see where we go from here. Brian and I have also asked if we can take Caleb home for those three months as long as it doesn't hurt his possibility of getting him on the list for transplant if needed. We should find out an answer regarding going home on Monday when we meet with everyone.

We will have to clean the house thoroughly, replace some carpeting, get all other carpets professionally cleaned, as well as set up a home nurse to help me get acquainted with all the IV's and what not when we get home. Caleb will have to remain in isolation. They have repeated some lab work and they hope that this will be back before the meeting on Monday so we can see what direction we are headed in, however, it also may be too early to tell anything regarding the steroids. As you can see this has a very hard couple of days. We have sat here for two months thinking he was going to get a transplant and know we are in a holding pattern. Hopefully the steroids will work (however some docs don't think they will) and Caleb won't need anything else but that to get his immune system sparked. They once again have said that Caleb is very complicated and probably won't see a case like this again in their lifetime....we just wish we could get some answers and how we could help Caleb and keep him healthy. We would like to if at all possible get Caleb home and be a family again and have as close to a normal life as we can. Please continue to keep him in your prayers.

Oh they have also placed an NG tube as Caleb has had some difficulty eating we are unsure if it is due to an oral oversion due to all the meds he is on, because he has CHARGE (some CHARGErs have off and on eating issues), or becuase he is sick due to the Cyclosporine. The craniofacial group does not think it is safe for Caleb to eat right now, so gets his meds through his NG tube and his nutrition he gets from his TPN and Lipids intravenously.He also had a couple days break from his mouthpiece (NAM) as he was having some sinus issues.

Also, as promised, I have included pics of Caleb's development. I have also added pictures on the his picture website, go to the link above on the left. He's doing great. We love and miss everyone soooooooooo much!!!!

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.