Well Caleb has another infection which has made him septic. He woke up two nights ago vomiting all night long. They finally pulled his ND (nasal duodenum) tube and placed a NG (gastrointestinal) tube to suction what was in his gut. The vomiting at that time finally stopped!!! However, they did try to place an OG (oral gastrointestinal tube) while the ND tube was in and he wouldn't breathe and his profusion (blood flow) was horrible. Once the ND was pulled Caleb seemed a lot more comfortable and the profusion got better. They did call a 'rapid response' (when they page the PICU team) to have the PICU group come and see him. He is being closely monitored now. They did cultures of all of his lines, urine, you name it. Nothing has grown yet. Since nothing has grown, the concern now becomes if he has another fungal infection. We continue to pray that if this is a fungus it doesn't spread to his heart and cause any problems. They believe a part of the infection is that his bowels/intestines went to 'sleep' and have stopped moving. An x-ray showed that his intestines were very large and so we are hoping the bowels will start moving again soon so we can place a new ND tube and start feeding him again soon. He has been pretty cranky since he got sick. We are praying that he can clear this infection and get better very soon.
As far as the Thymus I mentioned in my last post, it didn't past the screening process. They then were screening another thymus which looked great and passed almost all the tests, until today when it failed one of the last two tests. So again we are waiting for another Thymus. Dr. Markert did mention that there are going to be two heart surgeries next week, so we are praying for consents to be signed and for a good Thymus.
I know I promised pics from Caleb's birthday, but he is pretty cranky and is only sleeping for 15 minutes at a time. . . so we are pretty busy. I promise I will post them soon.
God Bless Everyone.
God Bless Caleb!!
Friday, July 27, 2007
Wednesday, July 18, 2007
Another Surgery
Caleb had yet another surgery today! He had to get an inguinal hernia repaired as they were concerned that it was cutting off part of his bowel. They were also concerned about his shunt catheter as previous x-rays had showed that the catheter had slipped into the opening of the hernia and was draining the spinal fluid way too low. Good news, by the time they got him to surgery the catheter had moved back into his belly so they did not have to manipulate the catheter, which is great as any time you touch any part of the shunt an infection could arise. Another concern was extabation (if the ventilator would be removed) as Caleb does have CHARGE and a lot of CHARGEr kiddos have problems with their lungs especially with anesthesia. BUT Caleb did great the tube is out and he is now recovering in the room. Again, we have to pray that he stays infection free of course as he doesn't have an immune system. Which brings me to another topic....we have a potential Thymus donor at this time. All we know is that a heart surgery was occurring today (which means a Thymus will be discarded) and Dr. Markert and her team were going to talk to the parents to see if they would consider donating a Thymus. If they do that is great!!! Then, of course, the Thymus would have to go through the testing process along with a screening process of the donor's family. So we are hoping that the family will donate the Thymus and that it is a good clean Thymus too!!! Keep praying!
Again, I can't thank everyone enough for all of Caleb's birthday gifts. They are still coming. You all have made his birthday so unbelievably memorable. It was tough to be away from all of our family and friends for his first birthday. But the support system you all have provided us has TRULY helped us through this time. [Okay..now I am crying] Everybody always comments at how strong we are as a family, but honestly you all are a big part of our strength. You all have prayed with us, sent emails and cards, and have been there when we have asked for anything.
Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!
—Ecclesiastes 4:9-10
Thank you all for lifting us up and being there for us. We wish we could repay you all in some way for what you have done for our family. Thank you so much. God Bless you all.
God Bless Caleb!!
Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!
—Ecclesiastes 4:9-10
Thank you all for lifting us up and being there for us. We wish we could repay you all in some way for what you have done for our family. Thank you so much. God Bless you all.
God Bless Caleb!!
Monday, July 16, 2007
Happy 1st Birthday Caleb!!
Wow... what a 1st Birthday!!!
Thank you all for your generous cards and gifts. It was truly amazing and the gifts are still coming today!!! Gifts literally came from all across the U.S. I couldn't even keep up with taking pictures of Caleb with every gift he got. I seriously had to go buy big duffel bags to put all his gifts in. It was a very heartwarming and amazing day. Awesome!! I have made a video and will be making another one with the next post.
Pap Pap Bernie and Brian are both home safely...and it was very nice to have them here. It seemed like the visit was very short.
Well I am sure you all want to see the birthday boy so...ENJOY and THANK YOU ALL and GOD BLESS YOU!!
God Bless Caleb!!
Thank you all for your generous cards and gifts. It was truly amazing and the gifts are still coming today!!! Gifts literally came from all across the U.S. I couldn't even keep up with taking pictures of Caleb with every gift he got. I seriously had to go buy big duffel bags to put all his gifts in. It was a very heartwarming and amazing day. Awesome!! I have made a video and will be making another one with the next post.
Pap Pap Bernie and Brian are both home safely...and it was very nice to have them here. It seemed like the visit was very short.
Well I am sure you all want to see the birthday boy so...ENJOY and THANK YOU ALL and GOD BLESS YOU!!
God Bless Caleb!!
Wednesday, July 11, 2007
He Ate Food Today
Caleb wasn't allowed to eat anything earlier today as he was having some awkward hives. They think they have found the culprit, one of his antibiotics he is on for his line infection, we aren't exactly sure yet. We will have to wait and see if any more develop since they switched his meds. We finally got to try some food this evening. He had a couple bites of bananas and liked it!!! He also had some thickened formula - which he didn't like, not to pleasing to the palate. He then threw up three times after the feed. We are not exactly sure why he is throwing up, but he has been having more phloem issues too. So the phloem along withm his cleft lip and palate may be causing the food to move up into the open palate and into the nose. Most kids have their cleft lip repaired by this time and the docs would start thinking about the palate surgery around this time, 12-18 months. This is somewhat concerning, as if the palate is not repaired around this time, when they start to talk, a speech impediment can develop. But, one step at a time. We have to get his immune system better first.
Caleb did have many stools lastnight which made him drop some very important levels, which they are trying to regulate now with different types of fluids. They have been changing the fluids all day and they just did another blood test to see if that is helping. Mainly his bi-carb, PH, and electrolytes are very abnormal. We are hoping that these fluids will help. I also noticed that they used apple juice during the swallow study yesterday so that may have contributed to the extra stools; in addition to his problems with the immunosuppression. I will talk to the docs about that tomorrow also.
They did put the halter monitor on Caleb yesterday and lastnight and he did not brady (drop his heart rate) while wearing the monitor. So we will have to see what they can decipher from the monitor and see if they want him to wear it again.
We are very excited!!! Tomorrow is Caleb's 1st birthday!!! So exciting. We have bought decorations and I went and ordered his cake today-Winnie the Pooh. I can't wait to decorate so I may do it tonight so it will be ready when he wakes up!!! Brian is flying in tomorrow too!!! And Pap Pap Bernie comes on Friday so Mom, Caleb, and I are very excited to see them both. God bless both Brian and my dad during their travel here.
Again, I will take many pics (trust me) of Caleb's birthday!!!
God Bless everyone.
God Bless Caleb!!
Caleb did have many stools lastnight which made him drop some very important levels, which they are trying to regulate now with different types of fluids. They have been changing the fluids all day and they just did another blood test to see if that is helping. Mainly his bi-carb, PH, and electrolytes are very abnormal. We are hoping that these fluids will help. I also noticed that they used apple juice during the swallow study yesterday so that may have contributed to the extra stools; in addition to his problems with the immunosuppression. I will talk to the docs about that tomorrow also.
They did put the halter monitor on Caleb yesterday and lastnight and he did not brady (drop his heart rate) while wearing the monitor. So we will have to see what they can decipher from the monitor and see if they want him to wear it again.
We are very excited!!! Tomorrow is Caleb's 1st birthday!!! So exciting. We have bought decorations and I went and ordered his cake today-Winnie the Pooh. I can't wait to decorate so I may do it tonight so it will be ready when he wakes up!!! Brian is flying in tomorrow too!!! And Pap Pap Bernie comes on Friday so Mom, Caleb, and I are very excited to see them both. God bless both Brian and my dad during their travel here.
Again, I will take many pics (trust me) of Caleb's birthday!!!
God Bless everyone.
God Bless Caleb!!
Tuesday, July 10, 2007
Echocardiogram Results
Well I am happy to say that the Echo did not show any signs of infection!!! PHEW!!!!!!! They said they didn't get the best pictures, but from what they saw, they said it didn't show any signs of infection. In addition, the calculation they can do to check the efficiency of the heart looks better also. His exit echo from the PICU was 37% and yesterday's echo was 50%. They said that most adults are at 60%, so he looks good!!!!
ALSO, Caleb went down for another swallow study today. As most of you know, Caleb has had eating issues before he got sick from what we think is an oral adversion due to how many meds he has been on. In addition, he was getting so upset when anything was put in his mouth he would aspirate (cough and move the fluid to his lungs). Since he was extabated in the PICU he has been really wanting to put things in his mouth. So he went down for the swallow study today...AND he only aspirated on very thin fluids so they are going to allow me to try to feed him a bottle at least twice a day and try feeding him baby food twice a day too. So exciting!!! Now. . . we also know with CHARGE Syndrome that some children have texture adversions with feeding too...so we will have to wait and see how he does over time.
ALSO, Dr. Markert came in today and was ecstatic with how Caleb looked and acted. Her words exactly 'He's back'. She said she was really scared with how sick he was how and if he would recover. She did say that a Thymus Transplant can happen a month after the heart surgery (we are two weeks post heart surgery today) granted they have a Thymus. She said she is going to look very hard for a Thymus!!!
So we are very excited. But again we don't let our highs get too high and our lows too low here.
I will let everyone know how the feeds go tomorrow!!!!
OH and Brian will be here in two days and Pap Pap Bernie will be here in three!!! YEAH!!
God Bless Everyone!
God Bless Caleb!!
ALSO, Caleb went down for another swallow study today. As most of you know, Caleb has had eating issues before he got sick from what we think is an oral adversion due to how many meds he has been on. In addition, he was getting so upset when anything was put in his mouth he would aspirate (cough and move the fluid to his lungs). Since he was extabated in the PICU he has been really wanting to put things in his mouth. So he went down for the swallow study today...AND he only aspirated on very thin fluids so they are going to allow me to try to feed him a bottle at least twice a day and try feeding him baby food twice a day too. So exciting!!! Now. . . we also know with CHARGE Syndrome that some children have texture adversions with feeding too...so we will have to wait and see how he does over time.
ALSO, Dr. Markert came in today and was ecstatic with how Caleb looked and acted. Her words exactly 'He's back'. She said she was really scared with how sick he was how and if he would recover. She did say that a Thymus Transplant can happen a month after the heart surgery (we are two weeks post heart surgery today) granted they have a Thymus. She said she is going to look very hard for a Thymus!!!
So we are very excited. But again we don't let our highs get too high and our lows too low here.
I will let everyone know how the feeds go tomorrow!!!!
OH and Brian will be here in two days and Pap Pap Bernie will be here in three!!! YEAH!!
God Bless Everyone!
God Bless Caleb!!
Monday, July 09, 2007
Echocardiogram
No results from the Echo yet. Caleb was sooooo good during the Echo though so he didn't need to be sedated!!!! Way to go Bubber!
Cardiology stopped by today. They removed the stitches from where the chest tube was and are debating on whether or not to remove the stitches from the longer chest incision. They have decided to hook Caleb up to a Halter type monitor in the next day or so for a day or two to see if they can get one of these Brady episodes recorded. If so, hopefully this will let us know what is causing the Bradys. Very nervewracking. The Cardiologist did say though that he is not as concerned about the Bradys as long as Caleb isn't doing them when he is awake too. If he was doing it awake and asleep that would point to a more serious issue. They are hoping that if he is just doing this when sleeping it is just because, like most individuals, your heart rate drops when you are asleep. Another encouraging thing is they are saying that he is perfusing well (blood is circulating to his extremities). However, I will feel better once we get a more definitive answer on what is causing these episodes.
We didn't get to see Dr. Markert today, hopefully tomorrow.
God bless everyone.
God Bless Caleb!!
Cardiology stopped by today. They removed the stitches from where the chest tube was and are debating on whether or not to remove the stitches from the longer chest incision. They have decided to hook Caleb up to a Halter type monitor in the next day or so for a day or two to see if they can get one of these Brady episodes recorded. If so, hopefully this will let us know what is causing the Bradys. Very nervewracking. The Cardiologist did say though that he is not as concerned about the Bradys as long as Caleb isn't doing them when he is awake too. If he was doing it awake and asleep that would point to a more serious issue. They are hoping that if he is just doing this when sleeping it is just because, like most individuals, your heart rate drops when you are asleep. Another encouraging thing is they are saying that he is perfusing well (blood is circulating to his extremities). However, I will feel better once we get a more definitive answer on what is causing these episodes.
We didn't get to see Dr. Markert today, hopefully tomorrow.
God bless everyone.
God Bless Caleb!!
Our Friends from the Duke PICU
On a side note....I just wanted to make note of the new links on the left of the page for the webpages of some of our friends we met in the Duke PICU. I have a couple more pages to add once I get more info.
Another Brady (dropped heart rate)
Well during the night lastnight Caleb;s heart started beating really slow again. They said that the EKG strip looked okay. I am getting a little frustrated though as I don't think this is being taken as serious as it should. As I said yesterday, I am really hoping Cardiology stops by today to offer their advice on what is going on.
Again, I will keep everyone updated on what the Echo shows today.
God Bless Caleb!!
Again, I will keep everyone updated on what the Echo shows today.
God Bless Caleb!!
Sunday, July 08, 2007
Sedated Echo
Well the peripheral blood culture and the culture from the other central line did not grow anything so far. So far so good (knock on wood).
They were able to identify the bug that grew in the cultures and the good news is they say that this type of bug responds to a broad spectrum of antibiotics. So they have switched Caleb's antibiotics to those that are less harsh on the system. In addition, they are going to do a sedated Echocardiogram tomorrow to check Caleb's heart and the ASD. They will check the ASD patch for vegetation to see if the bacteria has gotten to his heart. They are telling us that this type of bacteria is not as concerning as a fungal infection because of what type of bug it is. They say if they do find vegetation they will put Caleb on a longer course of antibiotics to treat the bacteria. I am just praying that there is no vegetation of course.
Dr. Markert should be back from vacation tomorrow, so we are hoping the Thymus Tissue screening process will start and HOPEFULLY they can find Caleb a Thymus and that it will work to spark an immune system for him.
Caleb's heart rate is still pretty low. I am hoping Cardiology will stop by tomorrow so I can get their input on what is going on.
Well all...I will let you know what happens with the Echo. Take care and God Bless.
God Bless Caleb!!
They were able to identify the bug that grew in the cultures and the good news is they say that this type of bug responds to a broad spectrum of antibiotics. So they have switched Caleb's antibiotics to those that are less harsh on the system. In addition, they are going to do a sedated Echocardiogram tomorrow to check Caleb's heart and the ASD. They will check the ASD patch for vegetation to see if the bacteria has gotten to his heart. They are telling us that this type of bacteria is not as concerning as a fungal infection because of what type of bug it is. They say if they do find vegetation they will put Caleb on a longer course of antibiotics to treat the bacteria. I am just praying that there is no vegetation of course.
Dr. Markert should be back from vacation tomorrow, so we are hoping the Thymus Tissue screening process will start and HOPEFULLY they can find Caleb a Thymus and that it will work to spark an immune system for him.
Caleb's heart rate is still pretty low. I am hoping Cardiology will stop by tomorrow so I can get their input on what is going on.
Well all...I will let you know what happens with the Echo. Take care and God Bless.
God Bless Caleb!!
Saturday, July 07, 2007
Crummy Line Infection - Prayers Needed
Okay all...I hope this new post find everyone well!! I hope everyone had a great fourth of July too!
I remember what was going on last year on the 4th. Brian and I went over to my brother Chad's to hang out with the family and to watch fireworks. I was due the next week. They had questioned Caleb's growth/development from the point at which I was four months pregnant, but that night something encouraging happened....my brother (who is a kid when it comes to fireworks) started the show early in his backyard and lit some fireworks for my niece and nephews and the neighborhood kids. The first firework went up and into the air and 'boom' and then it was awesome Caleb got the hiccups. We read so much when I was pregnant what to expect as far as movements in the course of pregnancy, etc. But we always read that hiccups were encouraging as that is a major suck/swallow reflex. He is a determined little boy. He has to go through so much. I have learned so much from my son, he has such strength. I continue to pray for his strength and fighting spirit. He honestly has taught me to be a better person.
As you can see from the post title, Caleb has a line infection in one of his two central lines that we know of this far. He was very grumpy two days ago and ran a low grade fever. They cultured the broviac line at that time and a bug grew in the culture. After two positive cultures from that line they decided to culture his other central line and do a peripheral stick to see if the infection is in his blood stream also. They started him on IV antibiotics as soon as he spiked a fever. We are still waiting to see what type of bug it is...they think it is in the family of one of the 'sticky' bugs. Which means it likes to stick to foreign objects within the body. The concern...not only is it a concern for immunosuppressed kids to get a bacterial infection but it is an added concern that the patch that was used to make the repair in his heart does not get infected. We are hoping that his peripheral culture stays negative for growth as the chances of the bug getting to his heart increase if it comes back positive. And once again that is a whole other situation if that patch becomes infected. So again prayers are needed.
His heart rate is a lot lower that what it used to be. We do know that before the surgery his heart was working three times as hard as what it should. Also, the ASD (hole in the heart) that was repaired is around the 'pacemaker' part of your heart. So we are not sure what is causing his heart to beat so low at times. Hopefully, it is part of the healing process and that it will normalize. It has been very scary as for the past couple of days his monitor has been alarming often.
On a lighter note....I left the hospital yesterday to do some birthday shopping for my little man. What fun?!?! We really can't afford all that I bought but man does Caleb deserve it and then some. It made it tough though as Brian was not able to be here with me to go shopping. Nonetheless, Brian will be flying in on the afternoon of Caleb's birthday, so we are excited. He really can't eat cake but Brian and I are going to go buy one so he can at least put his hands in it and get icing all over the place.
Again, I try to get to all of my emails, voicemails, etc. as soon as I can but it all depends upon what is going on here. I do appreciate everyone's support you are truly magnificent people-thank you so much.
OHHHHHHHHHHHHH the address as many people have been asking:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5123
God Bless you all!
God Bless Caleb!!
I remember what was going on last year on the 4th. Brian and I went over to my brother Chad's to hang out with the family and to watch fireworks. I was due the next week. They had questioned Caleb's growth/development from the point at which I was four months pregnant, but that night something encouraging happened....my brother (who is a kid when it comes to fireworks) started the show early in his backyard and lit some fireworks for my niece and nephews and the neighborhood kids. The first firework went up and into the air and 'boom' and then it was awesome Caleb got the hiccups. We read so much when I was pregnant what to expect as far as movements in the course of pregnancy, etc. But we always read that hiccups were encouraging as that is a major suck/swallow reflex. He is a determined little boy. He has to go through so much. I have learned so much from my son, he has such strength. I continue to pray for his strength and fighting spirit. He honestly has taught me to be a better person.
As you can see from the post title, Caleb has a line infection in one of his two central lines that we know of this far. He was very grumpy two days ago and ran a low grade fever. They cultured the broviac line at that time and a bug grew in the culture. After two positive cultures from that line they decided to culture his other central line and do a peripheral stick to see if the infection is in his blood stream also. They started him on IV antibiotics as soon as he spiked a fever. We are still waiting to see what type of bug it is...they think it is in the family of one of the 'sticky' bugs. Which means it likes to stick to foreign objects within the body. The concern...not only is it a concern for immunosuppressed kids to get a bacterial infection but it is an added concern that the patch that was used to make the repair in his heart does not get infected. We are hoping that his peripheral culture stays negative for growth as the chances of the bug getting to his heart increase if it comes back positive. And once again that is a whole other situation if that patch becomes infected. So again prayers are needed.
His heart rate is a lot lower that what it used to be. We do know that before the surgery his heart was working three times as hard as what it should. Also, the ASD (hole in the heart) that was repaired is around the 'pacemaker' part of your heart. So we are not sure what is causing his heart to beat so low at times. Hopefully, it is part of the healing process and that it will normalize. It has been very scary as for the past couple of days his monitor has been alarming often.
On a lighter note....I left the hospital yesterday to do some birthday shopping for my little man. What fun?!?! We really can't afford all that I bought but man does Caleb deserve it and then some. It made it tough though as Brian was not able to be here with me to go shopping. Nonetheless, Brian will be flying in on the afternoon of Caleb's birthday, so we are excited. He really can't eat cake but Brian and I are going to go buy one so he can at least put his hands in it and get icing all over the place.
Again, I try to get to all of my emails, voicemails, etc. as soon as I can but it all depends upon what is going on here. I do appreciate everyone's support you are truly magnificent people-thank you so much.
OHHHHHHHHHHHHH the address as many people have been asking:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5123
God Bless you all!
God Bless Caleb!!
Monday, July 02, 2007
In a Regular Room
Yep, you read that right we are in a regular room!!! Quick thank you to Aunt Jen to send out updates-you have helped me a lot keeping everyone informed.
Bubber's electrolytes are getting out of wack again though, but they are wondering if that is related to his Tcells/gut issues due to his Immunosuppression.
He has been laughing a lot. Which you have no idea how much that melts our hearts. He is so darn cute!!!
His longer incision where they opened his chest doesn't look bad but the one where the chest tube was is a little red. So we are putting Bactroban on it and waiting on the Infectious Disease group to come and look at it and tell us what they think.
They did an echocardiogram before he left the PICU on Friday and they said there is a little fluid around the heart but nothing to be concerned about. They will do another echo in a couple days.
His white blood cell count is up but they are not really sure why. They are going to check it again tomorrow and see how it is.
All I have to say is what an amazing little boy we have. He is so darn cute and so darn strong. Keep up the good work Bubber. AND as promised I have a video! Enjoy!
God Bless Caleb!!
Bubber's electrolytes are getting out of wack again though, but they are wondering if that is related to his Tcells/gut issues due to his Immunosuppression.
He has been laughing a lot. Which you have no idea how much that melts our hearts. He is so darn cute!!!
His longer incision where they opened his chest doesn't look bad but the one where the chest tube was is a little red. So we are putting Bactroban on it and waiting on the Infectious Disease group to come and look at it and tell us what they think.
They did an echocardiogram before he left the PICU on Friday and they said there is a little fluid around the heart but nothing to be concerned about. They will do another echo in a couple days.
His white blood cell count is up but they are not really sure why. They are going to check it again tomorrow and see how it is.
All I have to say is what an amazing little boy we have. He is so darn cute and so darn strong. Keep up the good work Bubber. AND as promised I have a video! Enjoy!
God Bless Caleb!!
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