Oh we are here at Duke!!! Bitter sweet to say the least!!! It was very hard for us to leave Brian today...so hard. I already miss him so much. We love you Brian!!!!! Good news though...we are here!!! They have already started doing some tests on Caleb. They did their first set of blood work today and swabbed his cheek to get a better look at his cells. They didn't waste any time!!!
I just want to say to all of those that we left today at Children's Hospital in Pittsburgh (diagnostics, immunology, nurses, PT, OT, discharge coordinator, girls at the desk-who always buzzed us in :) ) we thank you again so much for all that you have done for Caleb and our family. You are all so special and were there for us on our good days and bad days and are truly amazing. What an amazing network of people on the 9th floor...truly amazing. You are our 'home away from home' and 'family'....THANK YOU!!!
Thank you to Jen, Jess, Andy, and Craig (spelling? sorry) who sent Caleb and I a care package. AND what a care package it was!!!! You two are my sisters and I love you both soooooooo much and miss you so much!!!
Chad, Jen, Sam, Casey, Stacey, Ben, and Hunter we love you all so much please send us pictures so I can post some pics of Caleb's cousins and also hang them in his room.
I cannot thank all of you enough-most of you that have read this blog have helped our family in amazing ways-reached out when we needed a hand to hold. Thank you so much and God Bless you all. I truly feel blessed to have you all as a part of our lives.
Again, I will post pictures and more details (address, phone #, etc) tomorrow. I just wanted to let you know we are here!!!!
Monday, April 30, 2007
Thursday, April 26, 2007
Pi Kappa Alpha-Brothers-Family
When Brian was at WVU for College he was in a fraternity, Pi Kappa Alpha, and met several wonderful guys that I have had the privilege of meeting. Unfortunately, Caleb has not had the chance yet to meet them all, but they will all be in our lives forever so they will eventually meet our son.
Over the years I have seen Brian interact with his fraternity brothers at football games, weddings, picnics, etc. and it is amazing the bond that they all have. They truly are brothers. . . better yet family. And now the family continues to grow. Now there are wives and children that see what an amazing bond all of these guys have and feel comfortable being a part of the 'extended' family.
When we were flooded a couple years ago it was amazing how Brian's brothers were there in an instant to help. And now they are even more amazing . . . they have set up the Caleb Hlebiczki Medical Fund to help raise money for our family. They have set up a website (http://www.calebmedicalfund.com/index.html) where people/businesses/foundations can donate money to help us with the medical expenses we are incurring at this time. I truly hold all of them in high regard, they are amazing people that truly take care of one another. I cannot thank all of you enough. Caleb will learn about all of you and how you have helped him and our family. You all are angels in our book. Thank you from the bottom of our hearts and God Bless You All.
Over the years I have seen Brian interact with his fraternity brothers at football games, weddings, picnics, etc. and it is amazing the bond that they all have. They truly are brothers. . . better yet family. And now the family continues to grow. Now there are wives and children that see what an amazing bond all of these guys have and feel comfortable being a part of the 'extended' family.
When we were flooded a couple years ago it was amazing how Brian's brothers were there in an instant to help. And now they are even more amazing . . . they have set up the Caleb Hlebiczki Medical Fund to help raise money for our family. They have set up a website (http://www.calebmedicalfund.com/index.html) where people/businesses/foundations can donate money to help us with the medical expenses we are incurring at this time. I truly hold all of them in high regard, they are amazing people that truly take care of one another. I cannot thank all of you enough. Caleb will learn about all of you and how you have helped him and our family. You all are angels in our book. Thank you from the bottom of our hearts and God Bless You All.
How To Post
People have asked me how they can post comments on Caleb's blog. Here are the directions. At the end of each post there is a line that looks like the following
Posted by Sarah at 11:48 AM 8 comments
Click on the link with the word 'comments' in it. The link will take you to another screen. On the right of the screen you will see 'Leave Your Comment' and a box below that. Before typing your comment in that box you must choose an identity. If you do not have a blog account click the dot next to 'anonymous' and then type your comment and don't forget to put you name with the comment as it will say anonymous.
I hope these directions are okay. If anyone has any questions, please email me at sarah_hlebiczki@comcast.net. Thanks.
Posted by Sarah at 11:48 AM 8 comments
Click on the link with the word 'comments' in it. The link will take you to another screen. On the right of the screen you will see 'Leave Your Comment' and a box below that. Before typing your comment in that box you must choose an identity. If you do not have a blog account click the dot next to 'anonymous' and then type your comment and don't forget to put you name with the comment as it will say anonymous.
I hope these directions are okay. If anyone has any questions, please email me at sarah_hlebiczki@comcast.net. Thanks.
Thursday, April 19, 2007
What an Emotional Rollercoaster...
Wow, it has been a crazy and nervewracking week to say the least.
Monday, the immunology docs came into our room and indicated that Dr. Markert and others (NIH-National Institute of Health and a board at her hospital) have decided to go ahead with the Thymus Tissue transplant for Caleb. Again, they have never seen a case present in this fashion, however, they are optimistic that this transplant will work for him. There are other transplants that have been discussed, bone marrow and cord blood, but the drawback to those two options is that if either of those are done first they could never go back and do a Thymus transplant if needed. So Dr. Markert and her team have decided to go ahead and try the Thymus Transplant. The one stipulation given to us on Monday was that Caleb had to get a detailed Echocardiogram done along with an analysis at the Cath Lab. This analysis would decide which surgery comes first transplant or open heart.
Which brings us to the Echo and Cath Lab. Caleb went down to the Cath Lab yesterday morning to have an analysis done. He went down at 7 am and didn't go in until 8:45 am. They did a very detailed Echo and Cath which approximately took around five hours. We were then taken back to talk to the doctors to get the results. They indicated that the membrane that was found in the previous Echo is not posing any problems and that the smaller of the two ASD's (holes) closed. However, he still does have one significantly large ASD that is causing pulmonary hypertension. They have concluded that this ASD is the sole cause of the pulmonary hypertension. In addition, there has been no lung damaged caused due to the hypertension. The docs then had to discuss in their meeting, with all of surgeons from their practice, what they would feel comfortable with as far as treatment and surgical options. The scary part....when they tried to extabate (pull the breathing tube/ventilator out that is placed during surgery to help him breathe) his oxygen levels dropped and he turned blue twice. After those two extabation scares they decided to leave Caleb intibated and move him to the Cardiac ICU. A couple hours after Caleb was in the ICU they decided to try to pull the breathing tube and it went well. He was on oxygen for awhile but they removed that too while we had to leave the ICU during the change of the nurses. He came back up to the floor (his room) this morning. He is still wheezing so he is going to get a breathing treatment and is slightly dehydrated so he is getting some extra fluid.
The results are in as far as the cardiology meeting. They have decided they think Caleb would benefit from open heart surgery to fix his ASD early. As they cannot fix ASD's in the Cath lab at a young age. They think that while they are in repairing the ASD they will trim the membrane so it may not pose any problems down the road. Even though this is open heart it is better that he get his Thymus Tissue Transplant first then the open heart. That way any immune system function that may form, before the open heart, is better than none.
So is there a date for Duke?????? YES we are TENTATIVELY going on the 30th of April. YES that is right in about a week and a half!!!!!!!
So there are all the updates. Our little guy kept us and his wonderful doctors on our toes. We are glad he is back in his room and hopefully we can get his wheezing to go away and get him more hydrated.
God Bless.
Monday, the immunology docs came into our room and indicated that Dr. Markert and others (NIH-National Institute of Health and a board at her hospital) have decided to go ahead with the Thymus Tissue transplant for Caleb. Again, they have never seen a case present in this fashion, however, they are optimistic that this transplant will work for him. There are other transplants that have been discussed, bone marrow and cord blood, but the drawback to those two options is that if either of those are done first they could never go back and do a Thymus transplant if needed. So Dr. Markert and her team have decided to go ahead and try the Thymus Transplant. The one stipulation given to us on Monday was that Caleb had to get a detailed Echocardiogram done along with an analysis at the Cath Lab. This analysis would decide which surgery comes first transplant or open heart.
Which brings us to the Echo and Cath Lab. Caleb went down to the Cath Lab yesterday morning to have an analysis done. He went down at 7 am and didn't go in until 8:45 am. They did a very detailed Echo and Cath which approximately took around five hours. We were then taken back to talk to the doctors to get the results. They indicated that the membrane that was found in the previous Echo is not posing any problems and that the smaller of the two ASD's (holes) closed. However, he still does have one significantly large ASD that is causing pulmonary hypertension. They have concluded that this ASD is the sole cause of the pulmonary hypertension. In addition, there has been no lung damaged caused due to the hypertension. The docs then had to discuss in their meeting, with all of surgeons from their practice, what they would feel comfortable with as far as treatment and surgical options. The scary part....when they tried to extabate (pull the breathing tube/ventilator out that is placed during surgery to help him breathe) his oxygen levels dropped and he turned blue twice. After those two extabation scares they decided to leave Caleb intibated and move him to the Cardiac ICU. A couple hours after Caleb was in the ICU they decided to try to pull the breathing tube and it went well. He was on oxygen for awhile but they removed that too while we had to leave the ICU during the change of the nurses. He came back up to the floor (his room) this morning. He is still wheezing so he is going to get a breathing treatment and is slightly dehydrated so he is getting some extra fluid.
The results are in as far as the cardiology meeting. They have decided they think Caleb would benefit from open heart surgery to fix his ASD early. As they cannot fix ASD's in the Cath lab at a young age. They think that while they are in repairing the ASD they will trim the membrane so it may not pose any problems down the road. Even though this is open heart it is better that he get his Thymus Tissue Transplant first then the open heart. That way any immune system function that may form, before the open heart, is better than none.
So is there a date for Duke?????? YES we are TENTATIVELY going on the 30th of April. YES that is right in about a week and a half!!!!!!!
So there are all the updates. Our little guy kept us and his wonderful doctors on our toes. We are glad he is back in his room and hopefully we can get his wheezing to go away and get him more hydrated.
God Bless.
Friday, April 13, 2007
Sweet Caleb
I just don't understand.....
Caleb's results came back from his Echocardiogram. He still has the ASDs, between his left and right artrium, they have found in prior Echos and the pulmonary hypertension in the right vetnricle. A newer more concerning finding is there is a membrane is his left atrium that was noticed before but posed no concern. However, during today's Echo they noted that there is increased blood flow through this membrane, which may show this membrane may be tightening and backing up blood flow. The next step....They will be doing a chest x-ray on Caleb early next week to check his lungs to make sure his latest mucus issues are not doing anything to his lungs. They will then follow him for a couple of days. If his lungs look okay they will be taking Caleb to the Cath Lab to do an Echo under complete Anesthesia. If this Echo still raises concerns regarding the membrane they will then Cath his heart to get some measurements to see if this membrane is causing an issue. If this membrane is causing increased blood flow, Caleb will then require open heart surgery to be done a couple weeks after he is Cathed. This surgery for little ones with an immune system is not a big risk, however, if needed we are not sure how this would effect Caleb.
I just don't understand when our little guy is going to catch a break. We just don't understand why ONE test can come back without any concerns. It just doesn't seem fair.
Caleb's results came back from his Echocardiogram. He still has the ASDs, between his left and right artrium, they have found in prior Echos and the pulmonary hypertension in the right vetnricle. A newer more concerning finding is there is a membrane is his left atrium that was noticed before but posed no concern. However, during today's Echo they noted that there is increased blood flow through this membrane, which may show this membrane may be tightening and backing up blood flow. The next step....They will be doing a chest x-ray on Caleb early next week to check his lungs to make sure his latest mucus issues are not doing anything to his lungs. They will then follow him for a couple of days. If his lungs look okay they will be taking Caleb to the Cath Lab to do an Echo under complete Anesthesia. If this Echo still raises concerns regarding the membrane they will then Cath his heart to get some measurements to see if this membrane is causing an issue. If this membrane is causing increased blood flow, Caleb will then require open heart surgery to be done a couple weeks after he is Cathed. This surgery for little ones with an immune system is not a big risk, however, if needed we are not sure how this would effect Caleb.
I just don't understand when our little guy is going to catch a break. We just don't understand why ONE test can come back without any concerns. It just doesn't seem fair.
Results from Blood Work
Okay, so they don't think Caleb has GvHD (Graft versus Host Disease). It doesn't look like my cells are what they are seeing in Caleb's body. They are wondering if Duke may want to run the same test just to make sure they get the same results. Another idea that may be going on with Caleb's immune system is that it is taken awhile for his to 'spark'. If that is the case, he would be closely followed and then we would see if it would fully 'spark' or if may need help. As far as what they would do to help they are still not sure. They are still considering many test to see if his system needs to be given a chance to spark or if there are other causes for his immuno deficiency.
Caleb had his sedated Echocardiogram today, however, we haven't heard anything back yet on that. We are hoping that nothing has changed regarding the ASD (hole in his heart). We are hoping to hear something later on today.
Caleb also had a skin biopsy to check to see if he has Ehlers Danlos Syndrome. I have this syndrome (Type 2-Classic) along with my mother and one of my brothers so there is a fifty/fifty percent chance that Caleb has this Syndrome. If he does have this Syndrome it effects his healing, joints, tissues, etc. It is a connective tissue disorder. We probably wont know those results for awhile. Along with the skin biopsy they did another detailed chromosome test on Caleb to see if they see anything else that may tie the immuno issues with the CHARGE. Again, probably wont have those results for awhile.
Thursday, April 12, 2007
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.
Monday, April 09, 2007
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.
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.
Saturday, April 07, 2007
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.
Tuesday, April 03, 2007
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!!!!
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!!!!
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