Well for those of you who didn't get Aunt Jen's email. . . There is a rumor that Caleb may be going to a step down room today. This depends upon the results of an echo they did today. If all looks good and a room opens up we will be heading back to the floor!!!
Brian and I went over to visit with the nurses on the floor too to see if they had heard the rumor also and they did. They also are trying to pull some strings for us and get us a bigger room (as most of the rooms are very small). Thank goodness!
We also got a visit from Dr. Markert today and she will be on vacation next week BUT . . . she did say that if he continues to make baby steps in the right direction that they are going to start looking for Thymus Tissue for Bubber!!
His girth (belly) has been rather large and this happens when he feeds. They don't have him on his max volume of feeds because we don't think his gut can handle it at this time. We are hoping that his lipase and other enzymes along with his electrolytes stay with in the norm as they have since he has been out of surgery. However, we are not sure if bypass effected the enzymes or if the feeds being stopped for a couple days effected the lowering of the enzymes. . . we will have to wait and see.
Well all. . it is my turn to go back in and visit. I will post more later and will post the pictures as promised.
God Bless you all.
God Bless Caleb!!
Friday, June 29, 2007
Thursday, June 28, 2007
Bubber's Heart
Hey all----well he is continuing to make baby steps in the right direction...hopefully he keeps it up.
They removed his drainage tube and his femoral arterial line. There was one level yesterday that was a little concerning but it has been staying down for now. In addition, his pancreatic and liver enzymes oddly enough are within normal range for now too. We are not sure if the enzymes were lowered due to being on the bypass machine or if was due to his feeds, which they started back up very early this morning. So maybe we will see if the feeds effect his enzymes.
He looks good. He wouldn't urinate yesterday for them but they gave him a diuretic and that helped a bunch. He hasn't necessitated any pain meds since yesterday afternoon----tough kiddo. His lungs sound pretty good! We are CAUTIOUSLY OPTIMISTIC.
One of the Allergy and Immunology docs took some pictures for us before Caleb was taken to surgery and we have taken some post op ones also so I will post those later this evening.
If all goes well within the next week, they are going to start screening for Thymus Tissue. BUT as Brian and I say it is minute by minute and don't let you highs get to high and your lows get to low.
Again, we cannot thank you all for the prayers and support you all have offered to us. You have all lifted us up so much we appreciate it very much. Thank you and please keep praying for a complete and healthy recovery for Bubber.
God Bless.
God Bless Caleb!!
They removed his drainage tube and his femoral arterial line. There was one level yesterday that was a little concerning but it has been staying down for now. In addition, his pancreatic and liver enzymes oddly enough are within normal range for now too. We are not sure if the enzymes were lowered due to being on the bypass machine or if was due to his feeds, which they started back up very early this morning. So maybe we will see if the feeds effect his enzymes.
He looks good. He wouldn't urinate yesterday for them but they gave him a diuretic and that helped a bunch. He hasn't necessitated any pain meds since yesterday afternoon----tough kiddo. His lungs sound pretty good! We are CAUTIOUSLY OPTIMISTIC.
One of the Allergy and Immunology docs took some pictures for us before Caleb was taken to surgery and we have taken some post op ones also so I will post those later this evening.
If all goes well within the next week, they are going to start screening for Thymus Tissue. BUT as Brian and I say it is minute by minute and don't let you highs get to high and your lows get to low.
Again, we cannot thank you all for the prayers and support you all have offered to us. You have all lifted us up so much we appreciate it very much. Thank you and please keep praying for a complete and healthy recovery for Bubber.
God Bless.
God Bless Caleb!!
Wednesday, June 27, 2007
Surgery Update
The picture at right is one that was taken a couple days before his surgery. 
Well the surgery took half the time they thought. They did fix the hole and the triatriatum (the membrane that causes him to have three atriums). They were not sure if they were going to have to fix his tricuspid valve as it was showing a leak. They did not have to fix it, so that is good as it is close to the 'pacemaker' part of the heart. They think the repair of the hole and the triatriatum helped the tricuspid leak.
We finally got to see him around 8:30 lastnight. He has the 'normal' incision from heart surgery-one that goes from the collar bone to the sternum. In addition, he had two leads that were left on his heart that were there in case they needed to shock his heart at anytime. He also has a chest tube in to remove the extra blood from the surgery.
They were hoping to extabate (remove the breathing tube) him lastnight however he started to clamp down on the tube and wheeze so they decided to do more frequent breathing treatments through the ventilator and leave it in through the night.
He was extabated this morning. At the same time they removed the leads from his heart also. They have left the chest tube in and are hoping to remove it sometime today. He is still on many drips (IV's) to try to regulate the heart function as one side of the heart now is seeing less volume and the other side of his heart is seeing more blood volume. In addition, they are trying to regulate his blood pressure meds. They are hoping to have those well regulated by sometime this afternoon. They told us lastnight that the next 48 hours would be crucial as far as heart function.
He is pretty uncomfortable this morning so they are trying to help his pain with morphine and other meds.
We appreciate everyone's continual prayers, thank you so much. We ask that everyone continue to pray that Caleb's heals from this well and continues to make baby steps in the right direction.
Also, I want to thank my dear friend Jen for updating the blog and keeping everyone updated via email. We love you Jen and miss you very much.
God Bless you all!
God Bless Caleb!!
Well the surgery took half the time they thought. They did fix the hole and the triatriatum (the membrane that causes him to have three atriums). They were not sure if they were going to have to fix his tricuspid valve as it was showing a leak. They did not have to fix it, so that is good as it is close to the 'pacemaker' part of the heart. They think the repair of the hole and the triatriatum helped the tricuspid leak.
We finally got to see him around 8:30 lastnight. He has the 'normal' incision from heart surgery-one that goes from the collar bone to the sternum. In addition, he had two leads that were left on his heart that were there in case they needed to shock his heart at anytime. He also has a chest tube in to remove the extra blood from the surgery.
They were hoping to extabate (remove the breathing tube) him lastnight however he started to clamp down on the tube and wheeze so they decided to do more frequent breathing treatments through the ventilator and leave it in through the night.
He was extabated this morning. At the same time they removed the leads from his heart also. They have left the chest tube in and are hoping to remove it sometime today. He is still on many drips (IV's) to try to regulate the heart function as one side of the heart now is seeing less volume and the other side of his heart is seeing more blood volume. In addition, they are trying to regulate his blood pressure meds. They are hoping to have those well regulated by sometime this afternoon. They told us lastnight that the next 48 hours would be crucial as far as heart function.
He is pretty uncomfortable this morning so they are trying to help his pain with morphine and other meds.
We appreciate everyone's continual prayers, thank you so much. We ask that everyone continue to pray that Caleb's heals from this well and continues to make baby steps in the right direction.
Also, I want to thank my dear friend Jen for updating the blog and keeping everyone updated via email. We love you Jen and miss you very much.
God Bless you all!
God Bless Caleb!!
Monday, June 25, 2007
Prayers Needed, God Bless Caleb
I am posting this update for Sarah to let you all know that Caleb's open heart surgery has been rescheduled for tomorrow afternoon and it is very high risk surgery above and beyond the normal risks that exist with a surgery of this type (especially in someone so small). Caleb's lipase level has not regulated yet, nor have the other issues that have been going on with his liver and pancreas, however the doctors feel that his lungs are as stable as they have been in quite some time and therefore they need to move forward with the heart surgery now. His parents and families are both very nervous right now and they can all use your prayers as well as your prayers for Caleb's health and a successful surgery.
Please also pray for safe travels for Brian, Bernie Byrum (Sarah's Dad), and Ron and Jean Hlebiczki (Brian's parents) as they are on the road right now on their way to Duke to be with Sarah and Linda Byrum (Sarah's mom) to support Bubber.
God Bless Caleb and God Bless Sarah and Brian and their amazing families. I have to let you all know, and I am sure you will agree, that I have never seen people handle such a difficult situation with such grace, faith, love, and an amazing sense of family. The Byrum's and Hlebiczki's amaze me so and are such examples to all!! Thank you for letting us bear witness and be a part of your amazing family!!
Keep fighting Bubber, I am so sorry you have to keep going through this, but you are so amazing!!! WE LOVE YOU SO MUCH!!! God Bless Caleb!!
-Jen Straub (Aunt Jen)
Please also pray for safe travels for Brian, Bernie Byrum (Sarah's Dad), and Ron and Jean Hlebiczki (Brian's parents) as they are on the road right now on their way to Duke to be with Sarah and Linda Byrum (Sarah's mom) to support Bubber.
God Bless Caleb and God Bless Sarah and Brian and their amazing families. I have to let you all know, and I am sure you will agree, that I have never seen people handle such a difficult situation with such grace, faith, love, and an amazing sense of family. The Byrum's and Hlebiczki's amaze me so and are such examples to all!! Thank you for letting us bear witness and be a part of your amazing family!!
Keep fighting Bubber, I am so sorry you have to keep going through this, but you are so amazing!!! WE LOVE YOU SO MUCH!!! God Bless Caleb!!
-Jen Straub (Aunt Jen)
Wednesday, June 20, 2007
Update
Well a lot has been going on and it has been tough to update due to late nights at the hospital and the network at the hotel not working. So on with the updates.
Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.
Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.
He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.
There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.
So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.
There have been many things that have occurred that I have left out but I am trying to remember as much as I can.
We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.
Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.
Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.
God Bless Caleb!!
Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.
Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.
He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.
There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.
So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.
There have been many things that have occurred that I have left out but I am trying to remember as much as I can.
We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.
Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.
Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.
God Bless Caleb!!
Sunday, June 10, 2007
Wonderful Posts by our CHARGEr Friends and Families
Okay so as I have said before we appreciate everyones' emails, comments, phone calls, etc. Tonight I wanted to post two post from our CHARGEr friends blogs that are asking for prayers for Caleb.
Thank you all.
From Mighty Max's website:
prayers for caleb
Our friend, Caleb, really needs your prayers. He is having a very difficult time and is now facing open heart surgery in the coming weeks. While this is desperately needed (doctors believe he may be in early stage of heart failure), his body is not at its strongest and therefore recovery will be much more complicated.Please pray for comfort and healing for Caleb and peace and wisdom for the parents and doctors. Thank you everyone. We are very worried about our amazing lil' friend.
Posted by Maxwell and Amy at 12:16 AM
From Eva Nicole Masionis' website:
Sending prayers to heaven!!Date: 6/10/2007
Today we are at my parents house and my mom came home with a balloon so the kids could send it to heaven to ask for more prayers for sweet Caleb. What a sweet thing to do!!
Hugs and Kisses,Eva Masionis and Family
Please note on Eva's website there is also a video of the children releasing the balloon please visit her site by following the link with Eva's name above to see the video.
God Bless Caleb!!
Thank you all.
From Mighty Max's website:
prayers for caleb
Our friend, Caleb, really needs your prayers. He is having a very difficult time and is now facing open heart surgery in the coming weeks. While this is desperately needed (doctors believe he may be in early stage of heart failure), his body is not at its strongest and therefore recovery will be much more complicated.Please pray for comfort and healing for Caleb and peace and wisdom for the parents and doctors. Thank you everyone. We are very worried about our amazing lil' friend.
Posted by Maxwell and Amy at 12:16 AM
From Eva Nicole Masionis' website:
Sending prayers to heaven!!Date: 6/10/2007
Today we are at my parents house and my mom came home with a balloon so the kids could send it to heaven to ask for more prayers for sweet Caleb. What a sweet thing to do!!
Hugs and Kisses,Eva Masionis and Family
Please note on Eva's website there is also a video of the children releasing the balloon please visit her site by following the link with Eva's name above to see the video.
God Bless Caleb!!
Friday, June 08, 2007
Meeting
I really don't know how to start this...
The meeting was held today and the docs pretty much said that Caleb's heart may be in the early stage of heart failure. Therefore, they believe the next step needs to be open heart surgery to fix his ASD (his hole) and his tri-atriatum (the membrane that is causing a division in is his heart that is making the heart look like it has three atriums). They believe this has to be done to prevent any more damage to the lungs, help him in the lung run for the Thymus transplant, and to help him recover quicker from any possible future infections.
Of course with any open heart their are concerns:
The meeting was held today and the docs pretty much said that Caleb's heart may be in the early stage of heart failure. Therefore, they believe the next step needs to be open heart surgery to fix his ASD (his hole) and his tri-atriatum (the membrane that is causing a division in is his heart that is making the heart look like it has three atriums). They believe this has to be done to prevent any more damage to the lungs, help him in the lung run for the Thymus transplant, and to help him recover quicker from any possible future infections.
Of course with any open heart their are concerns:
- He will be on bypass and that does cause extra fluid in the lungs after transplant. This is a concern because Caleb already has some lung issues going on. He will probably not be the typical post op patient due to the lung issue. They said he could possibly go back on the oscillator again due to the fluid.
- Caleb has fungus in his lungs. So they want him to complete his full course of antifungal meds before going to the OR. The concern with this is they use a piece of foreign material to close the hole. If fungus attaches to the material it would be a very serious situation and life threatening.
- Caleb has other things that are going on right now that are not optimal for surgery: nutrition, elevated liver enzymes, etc. So we are trying to optimize these situations for the surgery also.
They did say today if the course of antifungal meds were done today they would have him in the OR as soon as they could. They are hoping that he can go to the OR within the next 2-3 weeks. I am leaving some things out but the main thing they stated today is that we are not starting out in 'optimal' conditions so we are not sure what his recovery will be like for the open heart.
So as always we would appreciate everyone's continual prayers for our Little Bubber.
God Bless Caleb!!
Thursday, June 07, 2007
Daddy's Here
Well all, not a lot of new developments. BUT Caleb did make eye contact today with the resident and with me but then his eyes kind've went funky again. His eye movements this morning looked a little more fluid, but he still tends to look up most of the time. He has been off the morphine since 8 am this morning and (knock on wood) hasn't seemed like he needs more. They have it on standby if needed. But we are hoping once they continue to ween his withdrawal meds that his eye movements will continually get better. They also did a head Catscan today to check his ventricles to see if that in any way is related to the eye movements. This was done to check to see if the shunt is draining the ventricles properly. The ventricles do look a little bit bigger than normal, but his are big. . . so that didn't seem too surprising. The brain itself seemed a little smaller than before but they said a lot of kiddos who get as sick as Caleb has been tend to have this happen. They are not sure at this time how and if at all this will effect Caleb in any way. The old 'wait and see' game will let us know. In addition, Caleb was able to get rid of the extra fluid off of his body and out of his lungs. However, the 'fungus' is still there.
We have a meeting tomorrow with Cardiology, Allergy and Immunology, and the Critical Care Team, to get everyone on the same page and to see what the plan of action is in regards to the MRI and Cath I discussed in yesterday's post.
Finally, Brian was able to come down today, thanks to Jeff Petzack, to be here for the weekend. We have missed him very much!!! Thanks again Jeff we appreciate it so much!!!!!!!!!!!
Again, thank you all so much for your continual prayers. We appreciate it sooooo much!!!!
I will post tomorrow night and let you know what happens in the meeting and see what the plan is in regards to checking Caleb's heart, brain, and other related issues.
God Bless Caleb!!
We have a meeting tomorrow with Cardiology, Allergy and Immunology, and the Critical Care Team, to get everyone on the same page and to see what the plan of action is in regards to the MRI and Cath I discussed in yesterday's post.
Finally, Brian was able to come down today, thanks to Jeff Petzack, to be here for the weekend. We have missed him very much!!! Thanks again Jeff we appreciate it so much!!!!!!!!!!!
Again, thank you all so much for your continual prayers. We appreciate it sooooo much!!!!
I will post tomorrow night and let you know what happens in the meeting and see what the plan is in regards to checking Caleb's heart, brain, and other related issues.
God Bless Caleb!!
Wednesday, June 06, 2007
Very Emotional Day
Well all I am going to try to make this short as it has been a very emotional and long day.
They are now wondering if Caleb is in Congestive Heart Failure. They have requested the Cath lab reports from Pittsburgh and are considering doing another Cath Lab here as he was so sick and things may have changed with his heart during this time.
In addition, they said his lungs don't look any better, in regards to the fungus, by x-ray. However, he is still extabated at this time. However, they said the fluid around his lungs is worse.
In addition, they are starting to get more concerned about his eyes. Opthamology came and did an exam today and said that they do not believe the fungal infection has spread to his eyes and his optic nerve looks good. But, they are wondering if his fungal infection has spread to his brain. So they are going to do a lengthy MRI that will check to see if the infection is in his brain, hopefully sometime tomorrow. They may try to do the MRI and Cath Lab tomorrow.
Dr. Markert (the Thymus Transplant doctor) told the critical care docs that she is not sure Caleb would survive the Thymus Transplant in the condition he is in now.
So that is where we are right now. We are very nervous and scared!!!!! Please continue to pray for Caleb.
God Bless Caleb!!
They are now wondering if Caleb is in Congestive Heart Failure. They have requested the Cath lab reports from Pittsburgh and are considering doing another Cath Lab here as he was so sick and things may have changed with his heart during this time.
In addition, they said his lungs don't look any better, in regards to the fungus, by x-ray. However, he is still extabated at this time. However, they said the fluid around his lungs is worse.
In addition, they are starting to get more concerned about his eyes. Opthamology came and did an exam today and said that they do not believe the fungal infection has spread to his eyes and his optic nerve looks good. But, they are wondering if his fungal infection has spread to his brain. So they are going to do a lengthy MRI that will check to see if the infection is in his brain, hopefully sometime tomorrow. They may try to do the MRI and Cath Lab tomorrow.
Dr. Markert (the Thymus Transplant doctor) told the critical care docs that she is not sure Caleb would survive the Thymus Transplant in the condition he is in now.
So that is where we are right now. We are very nervous and scared!!!!! Please continue to pray for Caleb.
God Bless Caleb!!
Tuesday, June 05, 2007
Our Little Man
Well all Caleb is peeing!!!! We are still not sure what is causing the fluid overload. The cardiologists are coming tomorrow to offer their opinion and see if they think the heart may be related in anyway.
His liver enzymes went up slightly today. The TPN (IV nutrition) was rehung (he was off it for a couple of days) lastnight so they are trying to see if the TPN made his levels go up so they are going to 'cycle' (not let it run over a full 24 hours - first time they are doing this in the PICU - usually they only cycle TPN on the floors) his TPN. So we will see in the morning if this effects his levels in any way.
They have started to wean his morphine because they are hoping his worst part of the withdrawal is over. His eyes are still not normal so we are hoping they will come back to normal once the meds are out of his system. However, he is still on Valium and Methadone to help him with his withdrawal also.
They have added an oral blood pressure medicine to get him off of the IV blood pressure medicine. They have also stopped his medicine that was a treatment for 'asthma' acting lungs. He is still on antibiotics though for his fungal infection and preventive measures also. They are many other meds that they have changed/stopped as Caleb was a VERY VERY sick boy and still is sick but we are hoping he continues to make baby steps in the right direction.
Again, I want to thank everyone for the phone calls and the emails I am trying to get to them as I do not leave Caleb's room in the PICU often as I am sure you understand. Thank you all again so much. God Bless you all!
God Bless Caleb!!
His liver enzymes went up slightly today. The TPN (IV nutrition) was rehung (he was off it for a couple of days) lastnight so they are trying to see if the TPN made his levels go up so they are going to 'cycle' (not let it run over a full 24 hours - first time they are doing this in the PICU - usually they only cycle TPN on the floors) his TPN. So we will see in the morning if this effects his levels in any way.
They have started to wean his morphine because they are hoping his worst part of the withdrawal is over. His eyes are still not normal so we are hoping they will come back to normal once the meds are out of his system. However, he is still on Valium and Methadone to help him with his withdrawal also.
They have added an oral blood pressure medicine to get him off of the IV blood pressure medicine. They have also stopped his medicine that was a treatment for 'asthma' acting lungs. He is still on antibiotics though for his fungal infection and preventive measures also. They are many other meds that they have changed/stopped as Caleb was a VERY VERY sick boy and still is sick but we are hoping he continues to make baby steps in the right direction.
Again, I want to thank everyone for the phone calls and the emails I am trying to get to them as I do not leave Caleb's room in the PICU often as I am sure you understand. Thank you all again so much. God Bless you all!
God Bless Caleb!!
Monday, June 04, 2007
Our Little Bubber
Well the critical care team has decided to put the gall bladder removal on hold so we are happy for those results, that is.... as long as his enzymes stay within normal range.
We had some concerns today as Caleb is a liter positive on fluid at least it is not almost 5 liters positive like he was before. So what is causing the overload....not sure...could be an infection (yet his white count is stable for now), could be his heart (but his echo looks to be like his last one before he got real sick), or it could be the lack of nutrition as he has been off of intravenous nutrition and not getting a high dose of oral feeds through his ND (duodenum) tube. They are providing him diuretics to see if he will urinate. They tried lasixs and it didn't work so they are trying two different meds so hopefully that will work. The last thing we need is additional fluid to get into his lungs along with the fungus that is in there. So we are praying he can get rid of this extra fluid.
We would also like to thank Jeff Petzack for getting Brian a flight down here this weekend. Thanks so much Jeff we appreciate it so much.!!!!
In addition, we have met two other families in the PICU whose children could also use prayers Madeline Lynch and Parker Ramsey. God Bless them and there families.
In addition, I have just found out that our hotel has Internet access so I definitely will be able to update more often. I miss posting notes on our CHARGEr friends websites too so I am going to try to get back up to speed with that also.
We miss everyone very much. Thank you for the continual prayers for Caleb and our family.
God Bless Caleb!!
We had some concerns today as Caleb is a liter positive on fluid at least it is not almost 5 liters positive like he was before. So what is causing the overload....not sure...could be an infection (yet his white count is stable for now), could be his heart (but his echo looks to be like his last one before he got real sick), or it could be the lack of nutrition as he has been off of intravenous nutrition and not getting a high dose of oral feeds through his ND (duodenum) tube. They are providing him diuretics to see if he will urinate. They tried lasixs and it didn't work so they are trying two different meds so hopefully that will work. The last thing we need is additional fluid to get into his lungs along with the fungus that is in there. So we are praying he can get rid of this extra fluid.
We would also like to thank Jeff Petzack for getting Brian a flight down here this weekend. Thanks so much Jeff we appreciate it so much.!!!!
In addition, we have met two other families in the PICU whose children could also use prayers Madeline Lynch and Parker Ramsey. God Bless them and there families.
In addition, I have just found out that our hotel has Internet access so I definitely will be able to update more often. I miss posting notes on our CHARGEr friends websites too so I am going to try to get back up to speed with that also.
We miss everyone very much. Thank you for the continual prayers for Caleb and our family.
God Bless Caleb!!
Saturday, June 02, 2007
Biopsy Results are Back
Well the results of the biopsy are back and it shows signs of a blockage, however, the other test (MRCP) they did did not visually show a blockage. In addition, his pancreatic enzyme levels came down greatly and his billirubin came down also slightly. We are hoping those continue to trend downwards. The Critical Care team, GI docs, and General Surgery are all in debate if the removal off the gall bladder is needed at this time. If the levels continue to trend downwards tomorrow they are willing to 'wait and see' how his levels continue to trend and not push it as an emergent case. So we are praying they continue to trend towards towards normal range.
In addition, Caleb's EEG (brain wave activity) test came back and there is no signs of seizure activity.
He has been sleeping off and on the last 24 hours which is much needed due to the lack of sleep and withdraw. So we are hoping that he will soon get through that but it will take awhile as he is still on morphine, quanidine, methadone, and valum to help him withdraw. The morphine will be the first drug they try to wean once they feel his withdrawl is getting better. We are hoping that his abnormal eye activity is related to the withdrawl also.
As far as updates that is all I have for now, but he is STABLE and STABLE is great!!!
God Bless you all and thank you for your prayers.
Kiss your children often-don't take anything for granted. Cherish the smiles, the laughs, the funny faces, the eyes opening, cherish every little thing. Don't take anything for granted!!!
God Bless Caleb!
In addition, Caleb's EEG (brain wave activity) test came back and there is no signs of seizure activity.
He has been sleeping off and on the last 24 hours which is much needed due to the lack of sleep and withdraw. So we are hoping that he will soon get through that but it will take awhile as he is still on morphine, quanidine, methadone, and valum to help him withdraw. The morphine will be the first drug they try to wean once they feel his withdrawl is getting better. We are hoping that his abnormal eye activity is related to the withdrawl also.
As far as updates that is all I have for now, but he is STABLE and STABLE is great!!!
God Bless you all and thank you for your prayers.
Kiss your children often-don't take anything for granted. Cherish the smiles, the laughs, the funny faces, the eyes opening, cherish every little thing. Don't take anything for granted!!!
God Bless Caleb!
Friday, June 01, 2007
God Bless Sweet Caleb!!!
Sorry all for the delay again in updates. Usually I come on here on give updates with a very strong front. However, I have to admit the last few weeks have been very scary for Brian and I. It seems as soon as you get your hopes up that everything is getting better they walk in and tell you something else. However, we have good news. Caleb is off the ventilator and is breathing with the support of oxygen. The oxygen is a preventive measure as he was intibated for so long they didn't want to move him right to room air. However, they have found what they think is fungus in his lungs. Which Dr. Markert believes this is what brought Caleb into the ICU but did not show itself until later as fungus tends to do. However, they said the x-rays yesterday looked good. I haven't heard about today's x-ray yet. So they have started him on a different antifungal med as the older antifungul med can have side effects on the liver....which brings me to another development. Caleb's pancreatic, liver, and gallbladder levels have been elevated for the last two weeks. Caleb does have pancreatis right now however, those enzymes are decreasing so we are hoping that is starting to 'fix itself'. As far as the liver enzymes that is a different story. They continue to rise and they are not sure why. They finally considered him stable enough to send him down for a liver biopsy yesterday so we can hopefully find out what is going on with his liver. We are hoping that, if anything, the levels are up due to a medication or his IV nutrition he has been getting. The ICU docs are concerned that if his levels continue to rise at this rate he will end up in liver failure. They are hoping that we will get the results sometimes this afternoon. Caleb is also going severe withdrawal right now as he was on several different sedation drugs while he was intibated and since he was intibated a very long time and his liver is not filtering as well as it should he is having a very hard time coming off the drugs. He has been running fevers off and on and he had really not slept in 48 hours until this morning. He is now sleeping off and on which is great as it is very hard to see him so uncomfortable. In addition, they have begun fitting his feet, legs, and hands for splints to help him regain the support he needs in those areas as you tend to lose muscle control if you are under sedation for a long period of time. In addition, his eyes have been acting kind've funny and we are not sure if it is sedation/withdrawal related or something neurological so we are getting a test done today to check on his brain activity and then a CT scan will be done later when the withdrawal gets better to check his brain more thoroughly. We thank everyone for your prayers and I promise as I get updates I will post quicker. This is truly an emotional roller coaster and very scary and I am sorry again for the delay in the update.
God Bless Caleb.
Also the address is the same as before just put PICU instead of the room number.
**On a side note I have just found out one of our little CHARGEr friends needs prayers he is in the ICU after having his much needed heart surgery. Please visit Tate's website, link is posted up at the left. Also, please say prayers for our buddy Mighy Max as he is having some respiratory issues. God Bless you all we are praying for you.
God Bless Caleb.
Also the address is the same as before just put PICU instead of the room number.
**On a side note I have just found out one of our little CHARGEr friends needs prayers he is in the ICU after having his much needed heart surgery. Please visit Tate's website, link is posted up at the left. Also, please say prayers for our buddy Mighy Max as he is having some respiratory issues. God Bless you all we are praying for you.
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